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Child with Down syndrome and behavior issues
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Child with Down syndrome and behavior issues

My 7 year old son has Down syndrome.  He is a joy to be with.  He does have impulsive behavior.  His behavior isn't always impulsive, but when he is, he is uncontrollable.  Has anyone had any success in diet or natural medicines to help with impulsive behavior?  An MD prescribed risperdal for him, but we don't feel comfortable giving an antipsychotic med to a 7 yr. old.
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You might go read about BrightSpark   it is a product of nativeremedies.com    I know this natural  product is safe because it is being used by my now 10 year old grandson  for ADHD  he has had it for 3 years now,   they wanted to put him on ritalin,  we refused and tried this,  he really became a different chiild.  Most children with DS do not have complusive behaviors.  You might want to get him tested for Autism?  Is your son in a school program?  
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Thank you for your suggestion.  He is in a school program, he's in a regular ed class with co-taught reading and pulled out for math.  He's very bright and very social.  We've had him evaluated for Autism and ADHD and neither was diagnosed or suggested.  A psychiatrist (who charged us an arm and a leg) met him for two hours and said he by no means has autism, but he has some autistic tendencies, ie the impulsive behavior.  She wrote out the prescription for risperdal and said she'd put together a behavioural plan for him, in conjuction with his teachers.  I haven't seen the results of the eval for the behaviour plan, but after two months of meds, I just felt like it wasn't right.  I want to try something natural.  I don't want to mask symptoms, I want to deal with them.  I'll check out nativeremedies.com.  Thank you so much.
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Hi Kathy, I have a son who has Down Syndrome he is 10 , 11 on Nov 28. He is now in 4th grade. He had some problem behaviors last year , such as throwing himself on the floor and refusing to get up if he was going somewhere he didn't want to go. I have found several thing that may have contributed to his acting out. 1. He needs quite a bit of phsyical exercise. It helped. 2. He was pulled out for 2 years of K into a "resource room" which had some severe children that were often crying or screaming and needless to saw it about drove him crazy. I put my foot down and said he would be home schooled before he would enter that room another year. He learned about nothing there, except he did have alot of compasion for the others and prayed for them nightly and still does.He doesnt take any "drugs per say" but is on Nutrivene-D Daily supplement vitimans made especially for DS . He has taken these since 6 mos and has been ill about 7 times in his life. Very little compared to "normal"kids I care for. Does he like swimming? Playing with water really sooths my son. Loves to "help". put away dishes dust, Talk to other moms .  I have many special needs children I care for . But little "D" is mine and the best thing that has ever happened in my life.
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Sounds like you very much have all your ducks in a row.  Had to laugh at your description of the some of the behaviors presented by your son, reminded me, of one my son decided to "act out" there was a child in one of the lower grades that had seizures and my son decided he would copy that , he would fall to the floor and copy the shakeing and the whole thing, I would get called to the school to pick him up.  I finally got them convinced that  he was just copying the boys action.  My son is now 37 and is quite a help to me, works every day from 9 to 3, he is a very independent person. Any child can be a challenge in those early years, stick it out and you will find the charming person they develope into.
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Yea I hear ya. He really copys the treak sound but still remembers to pray for the person every night. But It is important that we make sure our children have a environment that provides the learning needs. Such as nobody screaming or crying for long periods without the loud person having a aide to work elsewhere. I know my son in his hysterical laughing stage surly disturbed others, but would have benfited from a run around the playground  a few times. He loves to run and is calmed by hiking and running  I know he will be great. I went to the last DS convention in my  area. I didnt meet anyone with DS I wouldnt want around.
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my friends down syndrome son (who is 23yrs) has recently begun hitting and spitting at people. usually her son is so peaceful and never violent.  are there any suggestions?????  she is at her wits end.
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There has to be a reason, try to find out what it is that is bothering him.  Something new added to his schedule?  Get those involved to keep track of when it happens and what happened just before, see if there is a pattern.  I he in a day work program, if so, get his supervisor to help. it takes time to find out behaviors that start up, but it is worth it in the long run, because these types of behaviors can be retrained and avoided.  Good Luck
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father in texas cries out for help and for answers....my son is also down syndrome....he was very sociable and would communicate with us all the time....he is 10 n for the last 5 mths...wow...what a change...he speaks to him...fights with someone he sees....throws rages.... i dont know what is happening to him....ive taken him to psychiatrists..doctors......everyone gives me diff answers....thats is just puberty....harmones r not balanced.....one doctor gave him zolof...one day he took it...he really looked bad.....no respond...he looked crazy....WHAT IS HAPPENING....HOW CAN I HELP MY SON ALEX...PLEASE I NEED ANSWERS
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father in texas....i need answers.....is my down syndrome son really going psychotic........will he ever come back to us the way he was a couple of mths ago.....what should i give him.......any natural thing to control hes speaking to invisible friends..i mean he always had them but now he gets mad or scared of them....when he gets mad he throws chairs and bangs his hands hard on the table....is this normal....he blinks his eyes very rapidly sometimes.....please email me at ***@****
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my grandson is 10y.  he has been sent home every day from school early this week.  Needless to say, this is reaking havoc on their marriage also.  My son, work for 5 years in a "State School" for mentally disabled and saw many of his clients with Down Syndrome put on medications.  He is so afraid to start Taylor on meds. but after this week, he is ready to try anything.  Is there a specialist that anyone would recommend,  some pediatrition that specializes in behavior problems with Down children?  I have read the previous posts and they sound encouraging.  Maybe this is a stage, I think that alone would give them hope.
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I know someone with a 3 year old down syndrome child and at times she can be extremely violent with other children. I witnessed her violently attack another child and she assulted my 1 year old granddaughter. Her mom doesn't do a whole lot about it. I think that she feels like the child has been punished enough with her disease. She is also very hyper active.
I hear that down syndrome children are normally very quiet and mild mannered. Why would this child be so different?
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"I think that she feels like the child has been punished enough with her disease"
Wow, that is a pretty bold & arrogant assumption for you to make lady. Every child is very different, down syndrome or not. The problem comes from people like you who assume and uses words like, "violently attacks" & "assaults" to justify your lack of knowledge regarding children with special needs. That really isn't helping a lot of the mothers here asking for simple advice or help. Your fueling most of the arrogant misconceptions about down syndrome children. I'm a 23 year old guy, my baby sister is 3 and has down syndrome. I absolutely LOVE her and would not want her any other way! She has her little temper but not really any different than her peers. Some days she's shy, other days she's hyper. Your granddaughter is only 1 and this child is 3? Its almost natural for an older child to be dominant over a younger one, playground or at home. All it takes is patients and understanding. Children with DS are use to routine. In my sisters case, keeping her active seems to help a lot when she acts up, we have her paint, walk with her around the block, read to her, swim with her, and most importantly pay lots of attentions to her. Another thing, they mimic very quickly. It's almost very sincere and innocent the way they do. If they see somehing done a certain way, they will register that as the proper way to execute that behavior, emotion or activity. Mothers, try your best to be patient and keep researching, keep having the childrens busy and active. I try to do my best to understand and help my parents. Leaha, maybe you should try your best to understand.
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have a 5 yr old grandson, that is very loveable. yet when he comes over, he manages to lock himself in both bathrooms, and goes around locking all the doors with locks on them.  
It is if he is just looking to see what he can get into, Now he not only does this at my house but he does this at home as well.  My poor daughter is just exhausted at the end of each day.  He is not potty trained yet either,  If you have some advice for us.  Please let us know.
Texas Grandma
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Hi Granny.
I have an 8 yr old son that is very compulsive with doors as well.  He has a tendency to shut every open door.   He has even locked me outside when I was tending to the garden.   On closer evaluation  I noticed there are a few other behaviors that he has that is compulsive. For example he likes to "jiggle" blankets and stuffed animals.   Awareness is always the most important factor is modifying behavior.  Before your grandson goes to the bathroom get down on your knees to eye level (make sure he's looking you in the eye do not let him look away) remind him not to lock the door.   After you hear he toliet flush immediately tell him how proud you are that he had not locked the door.   Though he may not been offered the chance to lock the door yet, he will enjoy the praise and refraining from locking the door.  He, instead will come immediately out of the bathroom to receive the praise and hugs. '                Potty training is always difficult.  My 8 yr old is potty trained and understands the concept.  However, I still have tolieting issues as well.   If their routine or schedule changes or if their is stress in the environment then tolieting will become an issue.  Wetting is how they express stress.  Alot of the time they are not able to verbalize how they feel.   The only thing they can control is wetting.   Sometimes it is just a matter of not thinking to go or not wanting to stop playing to go to the bathroom.  Remind him every hour to go to the potty.   Watch fluid intake.  Also, try a sticker chart.   If he can stay dry all week than a reward is warranted at the end of the week.    (Trust me I am still go through this.   However, this tactics limit the frequency).   You may want to check with the urologist to make sure he does not have issues with his bladder.
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HI all,

My nice is a 11yr old beautiful girl living inside a 3 to 4 year olds mind. I wish I could read her mind sometimes because she really has no idea how strong and big she is compared to my 3 year old, who she plays with as if they were the same age. Over the past couple of years her behavior has become outrageous. She hits, pushes, swares, grabs, and is very aware of her behaviors! When she gets angry and the younger kids(2-3yr olds) she may very well strike them as if they were her own size.  Maybe this is hormones adding fuel to the fire but if she can hurt a small child intentionally and not even stop to think before she does it there is a HUGE problem. Alot of the time her mother brushes it off like it's not a big deal, but it's only because someone has'nt gotten seriously hurt yet! I"m afraid to leave the younger kids around her while playing in the playroom without supervision.

Just the other day she had a HUGE outburst and punched her 2 year old brother in the back knocking the wind out of him. He did pinch her but what ever the reason there is no need. Shes old enough to know the difference.

I dread a visit from her most times as she comes and literally DUMPS everything in the house! If theres a teddy on the bed it gets thrown off, pillows, blankets, throws, anything Just yesterday my 3 yr old son and I built a house out of the new dryer box. It took us the whole day and he was so proud. The minute she got into the playroom she tipped it over and flattened it to the ground!!! Then began ripping it up. When asked about what she had done her only reply was sorry mom, I'm sorry no time out. And ofcourse there was no timeout.   Makes me so mad sometimes cause I love her and wish that things where different as my son has such a connection with her and loves to see her come. But play usually ends within the first hour and she has either pushed, grabbed, ect or something. My son is no angel and at the age of 3 he's just beginning to be a little man! But shes old enough to know the differnce and does know the difference! Sometimes she pretends not to hear you, or pretends that shes dosent know what your talking about to avoid something. I'm so fet up! What the heck can I do when they are here and something like this happens. Her mother makes excuses for her all the time, takes her two kids 2yr old and 11yr old with DS into peoples houses and lets them go.....food everywhere, toys everywhere, screaming all the time, yet I still love them.

I see the frustration in the families face whenever theres a get together, she always acts out in someway. What do I do when this happens?

I'm not bashing any mother who is raising a child with DS but please be aware of these types of issues as other people around you are very aware that they are present. Deal with the problem rather then pushing it under the rug, these children need the extra disicpline and perhaps the help of a doctor to see where the aggression and manic episodes are coming from.

Her grandmother and father have many issues such as bi-polar, manci depression, ect could it be signs of whats to come....
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my son is 7 and has mosiac downs syndrome i am 25 with a daughter of 5, for the past 2 years i have noticed him self timulating on toys and recently he tried it on his sister. i had the school on the fone 2day and have to go see them as they say they have had to remove him from class. he goes to restbite once a month for the past year and  they have noticed him doing it, im quite afraid of wot the school will say. i just dont no wot to do i dont no if he is still too young to be maturing in that sense as wen he goes to bed his hands are straight down his pull up and he is constantly fiddling with himself. if any1 has any hints or tips or knows of any help availible i would be truely grateful. many thanks tracey
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I HAVE A 7YEAR OLD WITH DOWN SYNDROME. HE IS THE LOVE OF MY LIFE. LATELY HE WILL NOT LISTEN TO ME OR ANYONE AROUND HIM. HE YELLS AT ME. I DONT UNDERSTAND WHY HE IS GETTING SO MAD. HE KNOWS HOW TO TALK, HE IS FULLY POTTY TRAINED. IF I DONT LET HIM DO WHAT HE WANTS TO DO WHEN HE WANTS TO DO IT HE GETS REALLY MAD AND JUST YELLS AND DOESNT LISTEN AT ALL. IM NOT SURE WHAT TO DO. IM A SINGLE MOTHER AND HE GOES TO HIS DADS EVERYOTHER WEEKEND. I ALSO HAVE A 5 YEAR OLD THAT COMES OVER ON THE WEEKENDS HE IS HOME SO THEY CAN SEE EACHOTHER, AND HE SEEMS TO LOVE IT. I JUST DONT KNOW WHAT I AM DOING WRONG.
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need help my loverly 11 old son is getting to be uncontolable at times for no reason he starts throughing things around furniture computer table and once even the t.v. there does not seem to be any reason that starts this he can be good as gold one secound the next its like a swithch has benn turned inside his head. i need help from someone who has downs experience as all i get from social services is it must be me and threats that they will take him away from me.. HELP HELP or am i going mad
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I have an 11-year-old son with Down Syndrome and he his typically a good child for the most part.  But, he also has some behavioral issues of his own.  He has compulsive behavior with hitting me and often scratching me on my hands usually when he finishes on the toilet and then time for bed.  He doesn't do this when his father is home; only when we are at home alone. Are there any alternatives other than medication for him, preferably natural or other tactics..   I would like your feedback on this issue, plz..

I welcome your comments.
Thanks
Frustrated DC Mom
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Hi! I am a mother of a 13 year old son with Down Syndrome who has been mentally evaluated as being like that of a 3 year old. He has had behavior issues most of his life. Ofcourse when he was younger they were much milder, such as tossing his cup, or swiping things to the floor & MAYBE an occassional temper tantrum, which most toddlers have. As he has gotten older they have gotten worse while he has gotten bigger & stronger! Up until the last couple of years a majority of the behavior issues happened in school but now are increasing in frequency here at home. Medication had been suggested a long time ago but I didn't agree on it until this year. His behaviors consist of, kicking, hitting & throwing when he isn't happy about something or doesn't get his way. Half of the time they just come out of nowhere. He seems to converse with himself, grunts, grinds his teeth, paces, gropes the floor, twiddles objects in his hand, demonstrates facial "scruntching" and occassionally states he "see a cat in our room" (which we do not own). He is physically healthy other than having hypothyroidism and gets sick less than our other children do. He is involved in Special Olympics, LOVES church, singing & dancing, swimming & his most favorite...Chuck E. Cheese! HOWEVER, his irratic & impulsive behavior is starting to affect all aspects of his life which in turn is affecting ours! I'm being told it "probably is hormones". I've been told this for the last 4 years! Something has to give! We can hardly go places & if we do we cannot completely enjoy ourself or stay long because we are either on edge waiting for him to act out or he just does! The other children suffer for this! I  hardly work because of babysitter issues along with the behavior.

I have had his eyes and ears checked regularly. He has had tubes in his ears, tonsils & adenoids (adenoids) taken out due to chronic ear infections and sleeping problems which have both improved. Had him on Nutravene-D but could no longer afford it so I give him a daily vitamin and try to feed him more wholesome food and stay away from junk as much as I can with an occassional treat. We try as much as we can to stick to routine. His communication has improved but could use more therapy but we are so busy with the behavior issues it's hard to deal with the rest. With his physical aggression & impulsive behaviors increasing here at home he is now starting to attack us. We recently spoke to the Dr. and are set to see a neurologist next week to see if MAYBE he's having petit mal seizures that could be contributing. I don't know what else to do! Any suggestions?! This is starting to become a love/hate relationship, which I know most of it he cannot help. I pray, I vent to family & friends, cry often these days & try to read up & educate myself to try to help him. Today we were notified by the school to come pick him up because he was acting out physically so much it wasn't safe to put him on the bus. According to them he became upset because he didn't earn the weekly Lion award due to behavior. So he decided that wasn't fine with him and threw his shoes & socks at the staff, was trying to hit & kick, screaming and scratching at his own face & neck. I heard some of this over the phone when they had called & I was trying to verbally calm him down. It is Fri & he has done this 4 out of the 5 school days!  ANYBODY have a suggestion or similar experience??!!
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Patients... Sitting and playing with the child, spending time with, not ignoring the child. Puberty plays some role for the 10+ yr olds, however attention calms 99% of all these issues.

Medication such as ratalin is NOT the answer. If the issue is at school, they are observing such behavior often times in some fashion. If the children have brothers or sisters at home, have a talk with them about how their little brother or sister with DS will copy their behavior. Anything sexual or profanity is guaranteed to be picked up fast such as running around naked and screaming "Lookit my goober" and such.

I have had an issue with my child, whom attends a public school consisting of mostly African American children thanks to forced busing, whom has developed the ability to say the "N" word. In fact at one point we had a sitter that used to take him to a particular hamberger place in town when she had errands to run, and now when we pull up top that drive-thru he shouts the "f" word.

Kids with downs often time may not be the fastest, or the brightest when it comes to common reasoning, but I guarantee you they have the memory of an elephant, and will mimic any and all behavior they see.

When a teacher suggests, or a Dr Suggests mind altering drugs, 99.9% of the time the best thing to do is to tell them to F**K off... Tell the teachers to quit be lazy or find another profession if they cannot or will not take time to assist in educating both studies and behavior of special needs kids. Their training makes them aware of what they are getting into, and if they cant handle it, get out.

So take time with your child, love your child, do things that make your child smile. Sure they may shut doors, tear paper and run around screaming "lookit my goober"... Mine does this all day long... Just stop a minute, look in their eyes and you will be reminded why this child was born. To make one another smile, to steal each others hearts and to give one another hugs no matter the occasion at the drop of a dime.

Hutch
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my little brother is seven years old, he has downs. he is the most compassionate kid sometimes, but almost 90% of the time he just hollars and screams and is violent. if he doesnt get his way he throws a fit. if anybody makes him mad he literally punches or kicks them. he is too young for this behavior, i just cant imagine what it will be like as he get older. he does things he knows he shouldnt do, he has broken our toiet twice by flushing brushes down them and multiple other things that are severe. he just gets worse and worse. all the doctors think my mom is crazy and that she is just blaming his behavior on his downs but she isnt he really is terrible but we love him so much we just dont know what to do anymore. no punishment will stop him he just laughs. its getting out of control. any suggestions?
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My son has down syndrome. He's 14years old, and half of the time he's very lovable; the other half he's very difficult.  Most of the literature on down syndrome I have come across isn't giving the whole picture: they show or tell about some warm loving happy boy or girl.  Well, that's half the picture.  The other half is that they can be extremely impulsive and occasionally very violent. My life has been completely taken over because I spent every spare moment trying to keep my son with down syndrome from hurting my other two kids -- a three and four year-old.  It's not his fault, but he doesn't understand that he is 10 time stronger, and that when he throws a fit and throws a rock it could kill someone. I know people on this forum are against drugs, but I am willing to try anything. Does anyone know what kinds of drugs will contain the violent behavior?
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WOW-
I must say after reading all of the posts on this forum I'm at a loss for words.  I have an 8 year old boy who has Down Syndrome. Unfortunately,  I don't have answers as some of the behaviors we have never experienced.
At one point we did experience severe melt downs, some to the point where he would sit in the grocery on the floor and scream and cry at the top of his lungs.  At first I thought it was fatigue and would go at a different time.  I too, was  at my wits end as often what should have been a 30 minute shopping spree at the most turned into a 3 hour one because of the melt downs and having to wait for him to move past it.  If he didn't get something he wanted he would sit down, melt to the floor and be impossible to pick up.  After all, we're talking a 4ft  80lb mass of dead weight trying to lift off the floor.  So instead of fighting him or harming myself trying to lift him I would just wait it out, sometimes sitting down on the floor next to him.  I'll never forget one time that I sat down next to him in the freezer section at Walmart, he stopped screaming and crying and looked at me and said "mom, that's not right"  got up off the floor and said  "let's go" .  
He was exhibiting defiant behaviors at school as well, which was out of character for him.     One evening I was watching a special on our local news channel.... They were talking about Singular and it triggering a lot of negative behaviors in patients.  (Aggressive behavior, melt downs, depression, etc). After thinking about it the negative behaviors started about a month after we started the Singular.    I knew our allergist would never agree as it is hard enough to convince him that not all the upper respiratory infections are "because he has Down Syndrome".  I took him off the singular myself and with in a week I started noticing small changes. Melt downs weren't as often and weren't as long, more cooperative and agreeable, happier.  I continued to keep him off the Singular and by 6 weeks we had our boy back.    Not everything is perfect, but issues are manageable.  We can shop with out melt downs, we can tell him no and not have him scream like he is being beat.  So, my suggestion to some of you... check medications side effects thoroughly, food allergies can trigger behaviors too as my older children could not eat anything with red dyes when they were little as it triggered extreme hyper activity.  
I can always tell when he is coming down sick as behavior changes.
Also I've noticed behavior changes with frustration.  When our son is more frustrated he gets whiny or emotional.  When he doesn't know how to express how he is feeling we see him stomp to his room and throw things.  Some of these behaviors are so typical for a child that does not have Down Syndrome, but because we often focus on what we are told "Children with Down's are so sweet and loving"  "Children with Down's are so calm and mellow"  that we forget that they are children or individuals first and are surprised when they exhibit "typical" behavior.  Honestly... I wouldn't expect any thing less from my child.  
He does mimic behaviors that he sees in his classroom, sometimes, but we tell him that behavior is not acceptable and we will not tolerate it.  Sometimes we have to tell him several times before it soaks in but he listens.  
We discipline just like we do any other child, he gets grounded from activities when he does something wrong.  One thing I have noticed with some parents with a special needs child is they are afraid to discipline or fail to discipline.  I don't know if it is out of guilt or what, but that is only hindering the child.  I'm not talking spanking all the time or things like that.  But things like saying "No that is not acceptable" for the same issue all the time.  Consistency and repetition.  Not one time saying it and then the next time not.  Time outs for the same negative behavior until it eventually stops, taking away things (ie... computer time. video game time, etc.) for negative behavior.   It is a matter of being consistent and correcting all the time.
It is true that individuals with Down Syndrome can often have other issues going on.. Autism, ADHD, BiPolar, etc and it is always good to have those things ruled out when experiencing unusual behaviors.  As for medications... that is your choice.   I try all other avenues prior to medicating, simply because there are so many side effects that medication can cause which can create whole other set of issues.  

Potty training issues:  Our son has been potty trained since he was 18 mos old (quite unusual for a child with DS,)  how we did it....REPETITION!  When we knew he was starting to have a BM we would take him to the toilet, after doing this several times it registered.  He would crawl to the bathroom and tap on the door and sign toilet.  We would take his diaper off and he would go.  Didn't take long after that for him to realize he had to pee in the toilet too.  He would still have accidents, but doesn't most children at 2 & 3 who get sidetracked with playing or doing other things?
And then it got to the point that every store we went to and every restaurant we went to he would have to go.   (still does at the restaurants).  He would have accidents at school so the teacher broke it down to he had to go every hour.  Sometimes he would go and then 10 minutes later have an accident.  I finally took him to a urologist and discovered he was having bladder spasms.  As he has gotten older the spasms are few and far between.  Still frustrating but very manageable.  
I would also recommend if your individual with Down's isn't very vocal or their speech isn't clear enough to always understand them then use alternate method of communication.  Whether it be sign language, picture boards or something.  It reduces the frustration levels tremendously.  
I hope the best for all of you and that you find answers to help you.
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its very hard for anyone (downs or not) to be violent or destructive if they are exhausted. i wrestle quite hard with my girlfriends 7 year old downs boy, we also have a rope swing in the back yard, and regularly go to the park where there is a climbing structure and other kids., bike (tricycle) and anything else physical as often as possible. i also let the boy know when his behavior is not ok,(his mother wil plead weakly and be ignored, i dont) i dont allow the fact that he has downs make it possible for him to get away with poor behavior, a hard spank on the bottom is a great way to get a childs attention, if done with love and focus, it only needs to be done for a short while, when the child knows certain behavior will be rewarded with a spank, that behavior stops. lots of physical activity combined with appropriate disciplinary action for bad behavior has our downs child happy and well behaved, and praised and loved openly and regularly for his good behavior. 95% of the time he is a pleasure to be around,

occasionally  have to show him my spank hand/face, he knows i want him to stop whatever he is doing, and he does stop.



then we can all get on with having a happy life together instead of the downs boy driving the whole family crazy!

i believe the family deserves peace.
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I am the mother of a 13 year old girl with Downs.  Lately she has been havivg major behavorial issues.  All she wants to do is lock herself in her bedroom and watch TV or listen to the radio.....It isn't the fact that she does this it is what happens when she can't.  When she misbeaves or does not listen the only thing that impacts her is to either take her tv away of take time away from the TV...This throws her into a total tailsping.  Crying, throwing things and slamming doors and such.   She fights with us to do anything, go to school or everyother activity she is involved in.  We have thought about seeking professional help but don't know where to start...As long as she gets her way and has her TV life is good....Please anyone do you have any sugguestions....Thx
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My son with DS just turned 8.  He runs away from us a lot; sometimes I can tell it's a game with him, and other times he is focused on what he wants to do and seems oblivious to us.  Lately, the school said he has hit a few kids; this is new.  He also has hit me (and even tried to bite me!) in the past few months.  I've seen a couple of kids hit him, and he just stands there and doesn't hit back.  We've tried so many things--holding him in timeout, putting him alone in timeout, spanking, yelling, rewards, removing rewards.  I have no problem with the idea of discipline, and I know it needs to be consistent, but half the time I'm not sure what is appropriate!  And half the time he doesn't seem to care if I threaten to take away his TV time (and I always do take it away).  I only had to do that once with my other son and he knew I meant business.  So how do you work with a child who gets belligerent and says no to everything, even if he knows he's going to lose his favorite activities?  I've tried to use a system of pictures/icons that tells the order of things he'll be doing and shows the rewards.  Sometimes it helps, but often he'll get stubborn, especially with me.  After reading the posts above, I'm getting more concerned about the behaviors.  It seems that they might hang on for years!  I'm thinking of taking him to a behavioral specialist at our children's hospital.  I'll let you know what happens if I do.  Good luck to all of us.  Elizabeth
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I just posted and wanted to add a few things.  First, have any of you tried a halter/backpack/leash with your child?  We used one with our son when he was 6 and we went to another country.  Didn't want to take any chances with him running away. He actually kind of liked it because he knew we'd be going out for an adventure, and it DID keep him from running. Our ST recently recommended it as a way to take away his freedom and make him realize that if was going to run from us, we were going to put him in the backpack/leash.  I really hate to use it around our city, just because of what people will think, but I'm wondering if he needs it again.  Second, have any of you tried a communicating device?  We were shown one that looks like a laptop; it uses icons and will say complete sentences to help the child communicate.  Maybe that would alleviate some frustrations. Third, it does help a lot to have a sense of humor and to be creative about how I get him to do things.  But I'm not good at doing that all the time, and if we're doing something in public, forget it.  Thanks for listening. I love him to death, but  I'm just as frustrated as everyone else.   Elizabeth
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I have a wonderful 13yr old son with (ds),up to Christmas just past he would have the normal childhood tantrums.Since January he has become a total different boy,distant dislikes being hugged,touched and punches and kicks me if I say "no" to anything he wants to do right now.I am a single parent and have cried a lot because it's like I don't know who he is any more or how to get close to him.He has very limited speach and that adds to the frustration for both of us,I feel like I'm loosing him and don't know what to do,he gives me new bruises every week.Please help!!!
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my mom's boyfriend recently moved in with us and he has a three year old with down's that comes every other weekend. I am 16 years old with and have no family members with mental illnesses. The fact that he has DS doesn't particularly bother me, it's his behavior that drives me crazy. He screams and cries constantly, doesn't listen, slams doors, and makes huge messes. His father, of course, has no problem with this but he was recently at my house for a week and he completely exhausted my mom. When he's there i hate even being in the house because nowhere is an escape from his loud outbursts literally every 5 seconds. How do i cope with this and learn to accept him?
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I understand how you are feeling and I usually suggest one of my past posts for behaviours and aggression issues but this time I am quite sure it will not work for a three year old and not quite sure it will work for your thirteen year old, if his speech is limited - but in terms of limited speech, you may still want to look into my post to see if it is something he will be able to do.

http://www.medhelp.org/posts/Down-Syndrome/A-Suggestion-for-BEHAVIOUR--AGGRESSION-issues/show/1226208

The other suggestions I have are, getting back to basics.  Does your thirteen year old son enjoy books?  How is he when you go out?  Can you make some small day trips to the library?  The community centre?  A special needs parent/child play group?  Do you have any connections with Ds support groups?  What does his physician say about these changes?  While there are normal teenage changes due to hormones, there are certainly additional things parents of children with Ds have to watch out for, like Autism and hormonal disorders from other medical concerns.  When you say he reacts when being touched, my concern is does he have a sensory issue?  You should mention this to your doctor, and maybe get a referral to a Ds specialist if you don't already have one.  (Maybe speak to a geneticist for names of doctors.)
Please do let me know if you can or have tried these things.

For the three year old, this is a tough age and at your age (16) it is definitely harder for you to cope as this is such a new situation for you and your mother.  Your mom's boyfriend has had three years to adjust to the fact he has a young toddler as well as one who has Ds.  The thing to keep in mind is, while the child has Ds, at three many children exhibit this kind of behaviour, Ds or not.  Repetition is important at this age as well as consistency.  When the environment changes the child may react.  It may take a long time before the three year old adjusts.  

For all children with Ds, I always suggest music.  It is proven for children with Ds/Autism, music is a soothing, learning tool.  We have used music since our son Hunter (Ds) was born.  Whenever he has his moments, crying fits, music has always worked.  I would encourage you to find an instrument that is inexpensive, non destructible for the children to explore.  I have many kids toys that have musical components to them that allow my son to press to hear music.  We play CD's with different types of music (mostly Rafi).  You'd be surprised how well this works.

Please do let me know if these suggestions can be tried and if they work for you.  If they don't I will consult with my Intervention specialist for other ideas and suggestions.

In addition to anything I have mentioned, please keep in mind, that while I or others may have extensive knowledge in many areas, you should always seek professional medical advice from your own physician, as it pertains to medical conditions or concerns.
Good luck, and if you have any other questions that I can help you with, please feel free to message me directly.

Sincerely,
Sandi (Dragon1973)
MedHelp Genetics Community Leader;
Children - Special Needs Community Leader;
Down syndrome Community Leader & Ds Group Forum Founder/Moderator
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my son has down syndrome he is seven years old and is very hard to control sometimes and he throws something and refuses to go to bed he stays up really late my husband and i dont no what to do any ideas
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Hello Fru89,

I am not sure if you have read some of my post responses to this topic, but I have had this post often.  My last response above deals with some suggestions, but aside from the "non medical route" I do have a last ditch suggestion which does involve a medication that I do know has worked well for a lot of parents who I have contact with.
The medication is called biphenten.  It is in a similar class to Ritalin but with better proven results and less problematic.  The more positive thing about this specific drug is that there is no residual effect or withdrawal effect.  You can give this medication to your child when they are feeling or acting "out of sync", "fuzzy" or "foggy" as some describe.  It has been proven very effective in helping to control that "on" switch that some children seem to not have with respect to behaviours in that they act out or just act, and later explain that they just don't know why they did.  Often, children who seem unable to control their behaviours or seem to be "disobedient" aren't really this way.  The fact is, sometimes there isn't this "on or off" switch that professionals talk about which sometimes make it very hard for our children to do the things that we would like them to do, or what seems normal to you or I, in that we would naturally just do.
This newer drug, Biphenten seems to give our children that pause that they need to make better decisions, or think before they act.  It isn't a downer or depressant.  There has been a lot of good response with this particular medication, and I trust that my Early Intervention specialist who has a child with ADHD who was a parent had previously absolutely refused to medicate her child, has found that this drug was terrific.  Her daughter is now a much different child, better behaved, more responsive and now breathes where before, she seemed to just forget.

There is also a video that my early interventionist suggests, and it is called, The Out of Sync Child".  She recommends it to all her clients who have children with Down syndrome, Autism, ADHD or ADD.  She says that this particular book and/or DVD is wonderful.  It explains the reasons why children who have any of these situations behave the way in which they do.

If you need any more or other information, I hope that I can be of assistance to you regarding any of the topics that I have mentioned.  Often we get to the point of being at our wits end with trying everything imaginable to help our children and most times we blame ourselves.  You don't have to do that, and also sometimes we need to try other things that we might normally not think to do - because either we really didn't believe that a certain type of treatment or suggestion was morally right or because our family or friends think that there are other ways.  If they have not been in your shoes, they cannot comment.  I urge you to try what ever you feel will work best for you, your child and your immediate family.  I know that for myself and my husband, our 11 year old (his daughter from a past marriage) has ADHD and long ago her mother said that she would never medicate her children.  She had a very old school outlook, and now with a better understanding of this particular new medication she was willing to give it a try.  The same as our specialist and her daughter.  She too refused to medicate her child for years, and has now realized that she wished that she had done so earlier.  Sometimes, things we feel are best aren't always so.  I guess the way we can look at it is this, if someone had diabetes, would we suggest they just tough it out and not take insulin?  There are times were medications do help and provide things that without medication can't.  Having Down syndrome, ADHD, Autism, etc is not a weakness, it is medical, AND in many cases can sometimes require a medical intervention.   This isn't always the answer, but a doctor can better and hopefully in a well meaning way, explain what is the best route.  I am just giving everyone the reason why medications shouldn't always be ignored.  Each medical situation is unique, just like Diabetes is.  We don't tell people with other medical needs not to take medicines, therefore this is no different.

I hope that I have given you something additional to think about.  There is no right or wrong.  Just what is best for your child.

In addition to anything I have mentioned, please keep in mind, that while I or others may have extensive knowledge in many areas, you should always seek professional medical advice from your own physician, as it pertains to medical conditions or concerns.

Good luck, and if you have any other questions that I can help you with, please feel free to message me directly.

Sincerely,
Sandi (Dragon1973)
MedHelp Genetics Community Leader;
Children - Special Needs Community Leader;
Down syndrome Community Leader & Ds Group Forum Founder/Moderator
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I am have a son that just turned 7 and I have never had any problems what so ever till I moved him in the school he is in now and he has only been there for 1 year and starting this one.. I am getting his daily paper sent home everyday showing that he has began having meltdowns at school and not doing what he is asked sometimes...I think personally his teacher is over doing the problem by saying he is doing these things, because at home he doesnt so we had a meeting in school about the situation to make a solution for this and we come up with a couple of things to try and we all agreed well at the end of the discussion she had ask me if I would consider meds for my son and I told her no, so she asked what are you going to do if this is what your going to have to end of doing I told her he has never been like this he has his stubburn things just like any other child but you also have to know if you think you know about ds just because you teach and that is it you dont know anything really...So they think his stubburness is ADHD really seriously..So now I guess what I need to ask is what you would do if you were in my situation?? I love my son he is my world and I dont put up no bs when it comes to him or any ds child they are so important to me...He is almost potty train so I am sure I am tryin everything I can for him to stay on track for helping in the future but I cant say he is perfect he has his fits nothing compared to what is being said in school so I am just lost and dont even like the fact of bringing meds into this when we had already just agreed to help with him on things at home for her so help me please...........
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I have a adorable 11 year old son with Downs, three weeks into a new school, same school district he is getting into trouble, He is giving hugs to a little girl in his class.  She does not get hurt, but they state that she looks scared.  This child has been my childs classmate for over 10 years.  Are local Early Intervention school is very good. but the teachers give hugs to there students, And he gives hugs to family members.  We are now teaching who he can hug and who he cannot hug.  They are worried about him being taken advantage of later in life.
so much to think of.  We he does have his little attitudes, I just ignore
them.  I gave a cup of milk and a sugar cookie, he said no cookie dont want. I said okay walked away leaving him with both items. When I came back he was eating that sugar cookie saying yum.  Are children are testing us at any age.  
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Hello LegoMom,

Do you have a IEP or school advocate that you can get to attend the school with you?  If this were me I would personally want to see these behaviours that the teacher is speaking about.  My Early Intervention Therapist has told me on occasion that she has gone into her nephew's school (who also has Ds) to see behaviours that his teacher said he has - that are not apparent when he is at home.  She would stay out of his view just to observe his behaviours and was able to confirm what was actually going on.  At times she explained that there were behaviours that were occurring that were truly out of context simply because of the way certain things were happening.  (Either between a classmate or a teacher who was impatient).  So, without knowing what the "behaviours" are, it would definitely be confusing as to what you should do, and I don't blame you for being confused or stressed with the thought of putting him on Meds simply because the teacher suggested it.
Before you do anything, perhaps speak with your son's family doctor and also your EI.  I too would want other options if these were suggestions being made of me with no evidence on my end to confirm that it was something that should be done.

It definitely sounds (without being there myself to see) like this newer school might not have the same approach that your son's last school did.  Or perhaps things are changing in terms of your sons behaviours.  Either way, It would be nice to explore other options before medications to see if they yield any results or changes first.

I hope that the teachers are open to some other suggestions that are beneficial for your son first and foremost.

In addition to anything I have mentioned, please keep in mind, that while I or others may have extensive knowledge in many areas, you should always seek professional medical advice from your own physician, as it pertains to medical conditions or concerns.

Good luck, and if you have any other questions that I can help you with, please feel free to message me directly.

Sincerely,
Sandi (Dragon1973)
MedHelp Genetics Community Leader;
Children - Special Needs Community Leader;
Down syndrome Community Leader & Ds Group Forum Founder/Moderator
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This is such a stressful topic.  I have a mom who is participating in submitting a story for a book I am writing about Down syndrome.  She had some interesting statistics that she found for me regarding the percentage of abuse both physical and sexual in nature for children with special needs.  This really put things into perspective for me regarding my own son, for years down the road.  
It was because of this, I opted to go to a seminar that our Provincial Ds Association Conference is having this October.  The seminar will focus on Sexual information and Down syndrome.  I am hoping they will address strategies and ideas on how to go about educating our children - as you say, what is okay and what is not.  It is a very scary prospect knowing that any child let alone our kids can be taken advantage of.  
In thinking about your post, I was wondering if maybe your local Ds association has an expert or speaker that would be willing to send you some information about the topic?  I wasn't sure if you were asking or just noting about the possibilities, but either way, just in case - I thought to mention that most associations have a speaker or expert on the topic.

I hope that no child is ever taken advantage of.  It is a horrible thing to think about, but a necessary thought in order to work on prevention.

In addition to anything I have mentioned, please keep in mind, that while I or others may have extensive knowledge in many areas, you should always seek professional medical advice from your own physician, as it pertains to medical conditions or concerns.

Good luck, and if you have any other questions that I can help you with, please feel free to message me directly.

Sincerely,
Sandi (Dragon1973)
MedHelp Genetics Community Leader;
Children - Special Needs Community Leader;
Down syndrome Community Leader & Ds Group Forum Founder/Moderator
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Dear all
I have a wonderful Downs Syndrome daughter called Jennifer she is 19yrs old. Has been very independent all her life. She recently finished school and mananged to get her into a wonderful college. This is now where my problem begins. Jenny misses her old school so much that she has now been diagnosed with severe depression. This has had a massive impact on the whole family. Where she was once a happy helpfull lovely child has become very withdraw and sad. Is there anybody out there who shares my worries iam at my wits end.  
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I think its a possibility my 4yr old has down syndrome but she hasnt been checked she has the unique facial features and since she turned 4 she has become violent she also has growth delays im not sure what is goin on but would like to know so i can help and understand her.
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My son is 2 turning 3years old in 2 weeks. I think that he may have down syndrome. He has not been tested yet,Please let me know if this are any signs. He has been potty trained and in underpants but is now back into diapers like he forgot how to use the potty, He will take off diaper and play in bowel, He is very quiet and sneeky, I could turn my back for two seconds and he will be causing trouble (destroying something). He can talk very very good for a 3 year old and can tell me what going on but some times gets so fustrated and wont stop crying. He is very rough even though he dont mean to be ex. Trying to give his sister a kiss -he would pull her down/lay on her.Wont let me take his bottle away or has a break down. He is very smart knows all his colors and can count to 10 and he likes to be snuggled but only when he is ok with it. If i try to hug or suggle him he freaks out. I'm doing alot of research and could use some help please. Thanks nicole
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I just have to say WOW! I have a step brother with DS who is 23 and a daughter with DS who is 3. Why i say wow? This crazy pattern of testaments of uncontrolable children. Time outs, meds, parents throwing their hands up in confusion and loss of ideas. My brother started on that temper tantrum phase years ago. Id have to say out of all the methods that were tried or used, a good old fashioned spanking did the trick. Oh i bet youre all going to say, that poor little girl to have a mother who will use corporal punishment or discipline on her mentally handicapped child. And i will keep saying, oh that poor kid for everyone to be dreading his/her visits and company because he acts like an uncontrollable brat with parents who are afraid to put hand to bare bottom. I came to this site looking for any info on other kids my daughters age, and i have to admit reading all these started to scare me a lil. Then i remembered, i am the parent raising the child, not the other way around. These kids arent any different than kids without DS, just variably younger in their minds than their physical age. Dont say "well he cant help blah blah because he has DS", youre just giving that child another handicap. Parent up people. I mean good grief, where were all these behavioral problems when i was a kid, before people were afraid or too "good" to spank their kids?
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hi robby..(i am assuming that's your name :) ).. was so touched by your comments about ur sister and the advice given to the many parents who have contributed or asked questions.

I am a special education teacher in a asian country where stigma and social awareness of conditions like down's and autism are pretty limited and more towards the negative side.   I love each one of my students and challenge myself to make sure i am intune to them so that i can motivate them and help them in education.  To all the parents out there, take heart, you are doing a great job and all life blessings will be on you.   In Buddism a saying states that the soul of a baby seeks the best parent(s) whom it believes will be able to care and love it as it needs.   Your baby needs you, needs your strength and needs your courage.  Take care and may God bless you.
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    Down Syndrome is not a disease....
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I have read similar stories almost mirror images of what I've been dealing with for my son. He is downs syndrome of course and turn 21 recently. About 3 1/2 yrs ago he started to change. He used to be very loveable, happy anf funny to be around. He was a little, not much, but a little chunky. He slept good, was good natured, but had his moments like any child does. Then about 3 1/2 yrs ago he started to withdraw. He started to lose interest in things he used to love. He started having tantrums but not real bad and you could calm him down. Over this time everything progressively worsened. Little by little. He withdrew more, stop wanting to watch videos, stop wanting to play, to go to school. He went up until May of 2010 until I had to take him out because of his fits, violent outburst and aggressive behavior. He went through phases of it intensifying. He got to where it was hard to get him to come and watch a video, to where he will not watch one. He does not even want to come out of his room. He would sit there all day on his bed if you allowed him and sometimes it's a struggle to get him out of there. He hangs his head, runs hius hands through his hair and that's when he's doing good. Then he goes through phases where he will every 20-30 seconds, bang his headboard or wall, and then sometimes he will scream out very loudly like a monster. He keeps you on edge all the time. Then there's brief periods where you'll hear him laugh or giggle and you can go in and just enjoy him, but at the flip of a switch, it can and does turn off. Then it's like a totally different person, like a mad man.
It's hard to get him to eat now. This started about a year ago. He got to where he would not eat or you had to almost force him to. Even then and now, most of the times you have to feed him. Now we even have to bring his food to the bedroom because he will NOT go to the kitchen table. If we go for a ride, and that's no easy feat, he lays his head in his lap pretty much the whole time and sometimes flies into a rage. Then he will go into that banging stage and hit the door every few seconds. Sometimes he does it and then looks at me like he doesn't know what happened. I have also seen him at times for no reason start to cry and sob, especially when a certain song comes on the radio. But this happens maybe once a month sometimes more, but on average once a month.
As mentioned by others here, I've seen him clinch his jaw, rub his hands, and then he has had phases where he's made noises like grunts and snorts, but they came and went. As some other things came and went, but ususally something new took it's place. He doesn't seem to sleep well now either. He seems tired most of the time except at night a couple hours before bed time. He was diagnosed with mild sleep apnea about a year and half ago and used a CPAP, but now over the last couple months I can not get him to wear it. Even if I get it on him, he takes it off,
I have had him checked by many Doctors and sorry not wanting to offend, but I don't have much love for Doctors. He's had numerous test run and has No physical problems, the only thing found was the he is extremely deficient in Vitamin B12 in whcih he gets shots for since late October 2010.
I have tried dieatary change whcih I still do. He eats very healthy organic foods whith lots of vegetables and a lot of pure water. I have also tried numerous supplements, vitamins and some herbal items. All of which have had no affect on his sleep cycle or his mood/behavoir. I used Raw virgin coconut oil also, 3 tsp a day and it actually seemed to make an improvement. Not a b ig one, but he actually had about a week where he at least did not have a major tantrum, but then it returned stronger than ever. I tell you, although he did not come out and be his old self, that week was the best we've had in a while. He actually went to a restaurant for his Birthday the end of January and did not throw a fit and ate. That was the forst and last time in a long while. we can not take him anywhere, because he will go off and become violent. He even went balistic at the Doctors recently. Had a major fit.
I love him dearly and am Not going the med route. Don't believe in it, never have and after watching the documentary "marketing of Madness" I think I have plenty to back up my feelings.
I could go on, but I will cut to the chase after a long story. There is plenty more though and as I said, this started out as a small problem and grew into the monster we're dealing with today. It's quite a strain on us all and it breaks my heart to see him like this.
Does anyone have any answers to this?? Because the Doctors sure don't except to make a zombie out of him. I have evn had him to a Downs Syndrome clinic and they don't have answers. With all this going on, which I was not aware of this and thought we were the only ones carrying this kind of load, I am really curious as to whether anyone has found something to regain their child back. I want my son to be alove again, not just exist. I would also like to have peace in my home again.
I seen someone write or mention  they have had success with a product called "Nurtivene D". Does anyone know anything aboiut this or used it and had success in this area?
Anyone that can provide anything that can help or that has the answer to this, I would be eternally grateful.
Please let me know. Thanks and God Bless
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My brother is 23 and has always had behavioural issues from a young age, i.e biting, scratching, and poking. He was also diagnosed with having autist tendencies, i.e. twiddling paper, lash out when you get in his personal space, fixations on certain music of films which he would listen/watch continuously. Despite this he was always a very happy boy who was content with his own company and others.  He recently developed oral thrush and stopped eating and drinking. He was admitted into hospital and after a week was put onto a feeding tube as he was extremly weak and lost a stone in weight, he was in there for 2 long distressing months. This was an awful time and he went through many painful and distressing procedures.They tried different medications on him to try and overcome the psychological side of his food/drink refusal which resulted in further problems. Thank god he eventually started to eat and drink and was discharged from hosiptal. Since he has been back home he has been a different person. He is now subdued alot of time, talks to "invisible people" which mostly involves wimpering and asking for help (but can sometimes just be general words or phrases),sometimes he is so withdrawn whilst doing this he does not respond to anyone around him, he doesn't like spending any time alone anymore and has lost interest in things he used to love doing i.e. watching his films, and disappears off into his own head. He also now gets extremly tired and asks to go to bed at 8pm everynight. Whilst in hosiptal they discovered that he too was B12 which deficient which he now recieves shots every 2 monthes and i wonder whether this is playing a major part in the changed behaviour and almost certainly the tiredness, or just a combination of the traumatising experience he went through? After researching on the internet i found that lack of B12 can cause "mental fog" and changes in character.  We still see flashes of his old self where he is cheeky and funny but then disappears back off into his own world. I too would be interested to hear if anyone has tried Nurtivene D and if it had any noticable benefits.

Skic, some of the things you are discribing in your son,i.e the repetitive phrases (my brother does that too), and his withdrawn behaviour could maybe indicate a degree of autism? My brother used to be quite violent (the most dangerous was his tendency for poking/jabbing at peoples eyes) but we discovered that if we respect his personal space, i,e, warning him before we get close, or gently holding his hands down when going near him and most importantly warning others of the dangers if they try and get too close to him greatly reduced the number of incidents we had.

Any advice, questions or comments welcome.

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I have went ahead and got some products from the Nutrivene D people. I will let you know how things go with him. The people at that company are very helpful so if you want to call them, you'd be surprised at how much they want to help. Fellow named Rob talked to me for close to 40 minutes, maybe more.
Never really had any issues other than very minor ones (normal to most children) out of Matthew until all this started up about 3 1/2 yrs ago. Even then it was subtle and increased in frequency and severity as time progressed. He does not want to be around anyone, and if you let him would sit on his bed all day. Sometimes, not very often now, you'll hear him break into a happy mood, even silly with some laughter, but for the most part it's either him sitting quietly not wanting to do anything or then those more frequent episodes of banging the bed or wall and even screaming out.
Anyone else with info or tips, let us know. On a quest to see my son fully alive again.
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My daughter with DS is 13 years old, goes to special school. She is not a very active child, but a couple of months ago it is very difficult to get her to get her ready in the mornings.She just sits on the bed and sings loudly. We are late every day to school. Any ideas how to get her out of bed and started getting ready?
Also it was scary reading Skic's post. My daughter is also losing interest in things although she till  loves going out. She will sit on the bed all day and sing loudly, if left to it. Perhaps the thing is to deal with issues when they are starting before they become too big. Easier said than done. Anyone have any ideas?
Thank you
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Seen your post. You may want to talk to the folks that handle the Nutrivene D. If I'd know what I do know, I would have started my son on such things earlier. It's to soon to tell if it's helping him yet and I'm sure after so much time it will be a bit slower seeing result (due to much healing that will need to occur), But talking to that fellow at that place, he was supremely informed and has a downs syndrome child himself. He told me things in our conversation as a whole I got in bits and pieces from Doctors. After looking into this further, it became very apparent to me that the Doctors are misinformed about Downs or they're just not enough profit in them to make the effort. Not to mention thjings I know as fact now, no doctor has even gotten right or even had a clue. I even had my son at a Down's symdrome clinic in our nearby city and they didnt have a clue on how to pursue this matter. One things for sure, going the nutrition and supplement route is not going to hurt anything. I will update as a little more time goes by. I do wished now though, that I had pursued this even more agressively at an earlier stage. But I was really fooled into thinking (from several unreliable sources, re; Drs, teachers, etc) that it was a rebellion thing, stubborness. But it is obvious to anyone now, that what I'm dealing with is not the same person my son was. And it's grown into a very horrifying monster. I am seeking earnestly for the answer and pray for my son to be back soon.
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God willing amd with your efforts, he will be back, Skic.
You know what happened yesterday, I sang to my daugheter while she was waking up and kept singing to her (taking a cue from Sandi) until she got up out of bed and went to the bathroom. I was with her all the time, normally I tell her to go th the bathroom and then go about my work. It was so nice, no shouting, no losing temper she got ready so nicely and went to school. I felt so good, even though she was late because she woke up late. Today my husband woke her up really early, and she went to school on time!! Wow After so many weeks!! Hope it keeps up.
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i have a 13 yo son with down syndrome.   he is a great kid; however he is quite stubborn. he is not getting any smaller so physically moving 90 pounds of dead weight can be a challenge. one of his tactics is to throws himself on the floor and just lay down there.  if you try to make sense with him, he ignores me and rarely, very rarely changes his mind.  this bevavior usually shows up when he is asked to do something he does not want to. lately it has gotten worse, he is also refusing to communicate much and would assume to just watch movies and read books. last thing he has going on is that he is having pain in his hands, thumb area. doctors can not find anything objective via xrays wrong, but he complaints something is going on. somtiimes his hands feel cold and darker than the rest of his body. i'm afraid we might be missing something.  Anybody has any comments/ideas on this? i need help with his behavior and checking to see if he might have anything wrong in his hands...help!
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Not sure about the hand problem. One things for sure, you have to stay on Drs. to get them to really check anything. Wonder if there's something going on with circulation in that area?
Updating, my son has shown some improvement using the Nutrivene D. Not dramatic, but somewhat noticeable. In second month, so gonna stay with it and see if more improvements come. Maybe this would be something to look into as I've seen others ion this site suggest and use this. Specifically design for Down's.
Will update in another month or there about. Hoping to report more progress, but long way to go. Certainly pray is always in order.
Blessings
Skic
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My heart goes out to you all, but this is all so strange to me, my young brother has down syndrome "NOTE" I said "has" and NOT my down syndrome brother, think about it what if you have a family member with cancer or whatever, do say my cancer brother ??

And to hear people call down syndrome "a disease" this is really awful, they don't have a disease, it is not contagious, you can't catch it, people need to STOP saying this also.

My brother lives with me, he is 46 now yes when he was young and out with my mother and he saw the shop that he liked he would pulled away from her and run across the street, but there's many children out there that don't have D/S and they do it among other things, I think it's also a good thing to fine out what their mental age is, my brother has two ages, 4 and 9, 4 when it comes to the three Rs otherwise he's 9 years old, a lot has got to do with their up bringing, get to know their likes and dislikes, treat them as you would any child but with more understanding, if you say no to one child don't say yes to the child with D/S and explain that you said no to the other child and why, let them help with things and praise them for it always, if they do wrong tell them it's wrong and why, but don't leave that as the last word because they will be feeling very hurt, like maybe ask them to promise not to do it again as it's not nice, when they do give them a hug saying good boy/girl then go on to do something else with them, teach them to share and praise them for that too, another thing is with most of them if not all, everything's a routine if they set things out on their dresser or whatever, it upsets them if someone comes along and moves them, some may just put them back the way they had it, some may not but still get upset, worse if they can't tell you why so they might kick off ?? , if your child is upset  ask is it this or that, or hold your hand out and ask them to show you, and don't spoil them just as you shouldn't with any child, and if the child is ill, yes love and care for them but don't be all over them saying poor ?? or let anyone else say it to them it doesn't help matters, you need to get to know them better then you know yourself, when their sick and when not, their just looking for affection who doesn't ? just don't smother them, there are many other things, oh but never slap them this is wrong that's my opinion anyway, and they do get depressed just like other people, and they will copy what they see others do but so do other children and some people think it's ok to let them drink, this is so wrong my brother may be 46 but to me he's 9yeas old, it would only confuse them more, so called normal people can't handle it.

I wouldn't change my brother for the whole world, I've loved him from the min he was born, I was 10 years old then and I didn't even get to see him at that point as he wasn't kept in the ward with my mother but I knew he was special and always tell him so, now I say what are you ?? he replies "special". I would just like to add as well as down syndrome he has epilepsy/ underactive thyroid/ and now Dystonia and it's the last that I find a real problem with only beacuse I can't bare to see him suffer, their are doctors who don't even know what Dystonia is and no one knows of anyone who has D/S and Dystonia, but I did come across someone on here but can't get any reply back, and their are many types Dystonia, My brother having D/S I don't find a problem he's just my lovely wee brother.

(The Creed of Babies with Down Syndrome)

My face might be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As god in the heavens
Looks down from above
To him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do as you do
But at my own pace.

www.downs-syndrome.org
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P.S. Forgot to say my brother has never been on any meds ever, only now for those other problems he has.
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Do you have any more info on the problem your son is having with his hand ??
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If People with Down Syndrome Ruled the World.

http://www.nads.org/pages_new/news/ruletheworld.html
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im a proud nana of a WOUNDERFULL little 6yr old boy with DS.he is havin behaviour problems at the moment,he has lived with me for 2n half yrs,now a couple of mths ago he has been butting the floor and punching himself in the head,i have noticed ,that it has been happening since he has ben sleeping at his mums more and now he has gone bk its getting worse,he has started hitting me and his mum,and he wont go bed or stay in bed if he gets out,i didnt have this problem with,i try to help n giv his mum advice n told her too stick too his routine,he hates change,he is a lovin and beautiful boy,and very bright,do we ignore this behaviour or seek more advice,and yes please who ever said DS is a disease,go do ur research,he is no leper and its a syndrome,my grandson is gifted and hes my gift and hes very precious to me,MY ALFIE,XXXX
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I was seeeing a women that had a son that suffered from cerebral palsy/muscular dys. Several months into the relationship she placed her son into a facility because she felt she could no longer give him the adequate care he deserved. Well a few months later I found out she was pregnant and she alledged I was the childs father(by this time we had quit talking). initially she asked that I give her money to abort the child and I did, nevertheless she made the decision to keep the child after having told me she would have an abortion. well months go along and I find out that she gave birth to the little girl and I tried making contact with her to see how she was doing and also because I had heard from a mutual friend that the child had DS. well after she gave birth to the child, I apporached her about the condition of the child she told me that there was nothing wrong with the child and that the child was fine with NO mental or health issue. Well a year has gone by and I recently saw the child for my first time because she kept the child from me(but now she pursuing support for the child) and I found out that she has been lying the entire time about the little girls condition. IN FACT, she does have DS. when I asked her why did she lie she couldn't say anything she just dropped her head in shame because she KNEW she had lied to me!!! even though I know its not this childs fault, I cant pull myself together enough to want to be a father to a child that( never was suppose to be here,because she was the one that suggested the abortion) and two I cant get beyond the fact that the entire time since she led me to believe this child was normal. ( I simply wasn't mentally prepared, once the truth had come out).& In my honest opinion I believe that the only reason she's keeping this child even after birth is because she simply wants to have her as an attachment to me(her giving birth wasn't a genuine birth).I dont believe that its fair that 3 people now must suffer, because what Ive come to realize from these post is that having a strong support system can make or break the tolerance levels or ones ability to withstand parenting a child with such needs.I dont believe that she able to give this child the special attention that she needs. And why is that peoeple look down upon parents that make the decision to place the child in a facility where the child can recieve the proper care that the child deserves? That doesn't mean that the parent doesnt love the child it only suggest that instead of not giving the child the adequate care and attention that he/she deserves that its best for the child to be in an environment where he/she can recieve the proper care(not love) because parents still love there chilren. but if your not mentally albe to care for a child with a disability what good are you to the child, you yourself suffer from depression, anxiety?
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I am so happy that I joined this community. I have a nine year old with ds, with extreme behaviors. He is in a md class with an aide and a teacher. He has melt downs at least 3 times a week. He drops to the loor, spits and kicks. Help!  
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Hello There,
I can share with you prayer changes thing. Just do your part as the other parent the rest will fall in to place. Find support groups and help the child. Children with ds are challenging but they are people to. We all need help with our special angels.
Be Blessed,
SLC
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We have a son who has DS and is 10. This summer he started crying loud---LOUD in public and at home. This has been increasing to school and can last up to 2hrs 2-3 times a day. He recently fractured his femur (after the crying started) and has now become non-verbal. He refuses to speak , and has reverted back to signing. He lost interested in his videos and music and had a decrease in appetite. I have heard him talk to himself just once in the last 8 weeks .  Has anyone else experienced this we are trying to maintain routine and give consequences for negative behavior and have met with teachers. But miss the little guy we knew.
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I have a 23 year old down syndrome sister and she is non verbal, uses diapers and we have to feed her.  For the past 8-9 years she has been extreamly temperamental, she screams her lungs out for no apparent reason, the doctor has diagnosed behavioral problems because we have done all tests possible to locate pain or problems.  The doctor has prescribed so many different medications to give her to control her and within days her body becomes immune to them. She doesnt walk much but she can, she is just extreamly temperamental she does not like to be around anyone and only screams in anger all the time.  

When we are feeding her she spits the food out and screams in anger, when we change her diaper she crosses her legs and pushes us (3) of us my mom, my self and my other sister.  Cannot stand no one touching her.  The doctors now dont even get near her when examining her.  She does not bite or scratch but she only screams sooooooooo loud that you can hear her almost half a mile away.  He screams are similar to that of someone being strangulated.  Due to that police have been called to my house by neighboors to see whats going on.  

It is very difficult because i love my sister and we want to help her but we are at the point we dont know what to do anymore.   We are giving her
Risperidal, Seratine, Nexium (for her gastritis), calcium, vitamin D, miralax (for her cronic (chronic) constipation)

Is there any other medications at this point that you can recommend to help her relax and maybe even make her feel happy.  

Thanks so much

please email me to

***@**** if you can

thanks

Victoria,
Palm Springs, CA
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i think you wrong  mate jumping at this lady like this ds kids can be real violent and hobble and some are lovely and real good it,s teaching of the parent.s who like to turn a blind eye to there behaver////    ds  is  diffident with all kids i have a step daughter and because her mum never set any boundaries for her she spit,s, pushed, pull,s hair, ,bite,s, scratchers, kick.s   and can be a real naughty child, your sister is only 3 and getting all the one to one with you but when she,s go.s to school that when her behaver will change.. because she,ll not be getting the one to one with you,,,,, now this lady maybe right the mother of the child do.snt care what her daughter do,s because she see the ds not the child. just like my step daughter.s  mother,,,   all the best with your baby sister mate, all the best, for you and your family ,
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i think your right mate my new man has a ds daughter she can be a trying little girl and know,s she,s doing it because when she do.s she look,s at me and smiles and poke,s out her tong,,  i agree on the spanking he has started to do that very thing and put her on the naughty steep she,s real starting to come around to it,,,  and hope the bulling of my 8year old and 8week old baby will stop,,,,, happy day,sssssssss
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I came to this site looking for information about medicating my 20 year old son who has Down Syndrome.  He stopped attending his school about a year ago.  He says that he 'graduated', which is not true.  He stays up until 4 or 5 a.m. every night.  He has pulled about 3 all-nighters in the last 1 1/2 years, usually, when he is over-excited about something.  He has invisible friends, and has carried a spoon and a pen around for about 15 years.  He is usually good-natured, but very, very stubborn.  He does not like to leave the house for much of anything.  He doesn't want to go bowling, swimming, to the movies, stores, or even to visit relatives.
  We stopped the dairy completely (along with all animal products) about 3 1/2 years ago, and he has not been sick with a sinus infection in all that time.  They were a chronic problem before that, and he was on antibiotics most of the time.  I recommend avoiding all dairy for any child that suffers from chronic sinus, ear problems and/or excema.  We saw so many different doctors through his life, and not even one of them suggested cutting out the dairy.  I just stumbled onto it on my own.  My son is very resistant to eating healthy foods, and has a very limited diet.  I give him a daily vitamin, but he is a healthy guy in every way.  He has gained about 20 pounds in the last year, since quitting school.  He was always a skinny little guy, and I don't know what to do to get him to be more active.  He does a little bit of dancing, but mostly enjoys watching his (same) movies over and over, and spending time on his computer looking at his millions of photographs of pretty much, the SAME things (the cat's litter box, the cat, his spoon and pen, the floor, etc).  He just got a Wii for Christmas, so maybe that will help some.  I took him to a doctor a few months ago, and he was given a low dose of Prozac for depression and anxiety.  I don't see those problems in him. (The doctor also wanted to medicate me!)  The next month they added Depakote, which is for mood disorders, and sleeping pills, which did not work AT ALL.  I do not want him to be a guinea pig, and turned into a zombie.  I weaned him off of all medications slowly, and do not wish to go that route ever again.  I am very troubled by all of the comments that I get from friends and relatives in regards to my son's behaviors.  So many people tell me that I should just 'make him' go to school, or get a job, or go to bed earlier.  I have really struggled with this issue, but after reading all of the comments on here, I think that we don't really have it so bad.  My son does a lot (really, really a lot) of talking.  Car trips are very difficult, and when company is over, it is very hard to have a conversation.  I get overwhelmed, and feel somewhat isolated at times. There is never any violent behavior.  He does have a callous on his fingers, where he rocks his spoon back and forth.  It's nice to be able to sound off here.  I haven't found a doctor yet, that knew very much about people with Down Syndrome!  

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I have a 7 year old ds boy.and I have discovered how to make him mind,pottie trained in 1 month and his attitude at school has changed 99% I stopped the treatment and he went back to his disruptive behavior so if anybody out there is on the verge of throwing in the towel I would gladly offer my recommendations and a step by step guide that's available for purchase and believe me results are noticeable within the first week I'm not a writer but I have managed to find methods that work ! My name is Bradley and if anybody is interested shoot me an email at ***@**** thanks
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Try a gluten free diet, my cousin with twins with downs were found that that helps.
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I wonder the same thing about my son.  He will be 3 in June and has Down's as well.  He is also extremely hyper active and very impulsive.  His tantrums are out of control.  I even have a behavioral therapist coming every week to help us get a handle on his "issues".  Obviously he is too young for medication but I don't know what to do.  It's put a huge strain on my marriage as well.  We are both so tense when we go out in public.  Don't get me wrong, I love my son very much, but am concerned about what else is going on.  He isn't talking yet but trying to.  Maybe his frustration comes from lack of communication?  I don't know.  Need advice.  Anyone else dealing w/ this or something similiar?

Also, we were told by our genetic's counselor that if he had ADHD (bc that too runs in our family) it would probably be masked by the Down's however his behavioral therapist definitely said he appears to have it.    
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Bradley, it doesn't show the email.  I'd love to hear your suggestions.  I have a little boy with DS that will be 3 in June.  Very hyper and aggressive at times as well as impulsive.  Wanting to start potty training asap and be able to go out in public w/out a melt down!  
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I have 5 sons, the four of them potty trained before they were 3years old. My son with ds learned to potty train when he was 6 1/2 years old. It was very hard, but it did finally happen. Just try to be very patient with him. Reward him when he does go, and when he doesn't try to be positive.  Keep a schedule of the times he does go, so you can bring him to the bathroom at those times. I used to bring him about 15 min. after he eats every meal, and before leaving the house, and before entering a store or doc appointment etc. Whatever you do, do not use diapers or pullups, they just delay the potty training longer. My son did not like to feel wet or dirty.  As soon as I switched to underwear, a  week later he was trained. I did have to throw out a few.  Hope this helps! You are blessed!!!=)  
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My daughter is 6 yrs and has been doing the same thing.  Our behavior specialist at the therapy school got one of the blue squishy toys from Dollar Tree to redirect her from 'self-exploration' to dangling or throwing this toy.  It has worked wonders!  It has little plastic nubby strings on it that she likes to dangle it from.  Yes, this is considered 'stemming' and usually not an encouraged behavior most of the time, but it draws the attention of the child to something else besides what's under their britches. It also helps with her aggressive behavior since I give her a 'target' to throw it at.  She has such a good throwing arm that I make sure it's a pretty good distance away from any breakables, but it makes her focus, which helps with her coordination and motor skills.  Hope this helps. :)
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Wow Robby he might just be right because the child I do work with can get very violent to his mother and has been to me also. We need to take something away from him and he really got very hurtful with everyone in the room I mean he is very strong and takes fits of rage out on others. Yes every case can be different,this child cannot be redirected when he excels,he will go after you and hurt you, other then that he is a beautiful child of 11 and we all love him he can be and is very pleasant most of the time but the temper is dangerous as he is extremely strong it took two of us to get him to let go of us.
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I have been reading all the posts on this sight and I am glad to hear my family is not alone with the behavioral problems regarding Down Syndrome children. I have a 5 year old grandson with Downs. The love of my life. Mostly for me he behaves pretty good. However, his behavior for his mother, my daughter, is some times overwhelming. He does the throwing himself on the floor when he doesn't want to go some where. He has thrown toys just to throw something, not out of anger. He is still not potty trainined. Don't get me wrong, he can be the most adorable and good little boy, but some days he is like a totally different child. My daughter is 8 months pregnant with her second child and is besides her self most days.
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leaha how old are you ?? i think you should get you self a dictionary and look up the word disease you wont find downs under that catagory i have 4 kids my son has downs he,s the most funniest little man he takes a little more time to learn things but when he gets the hang of stuff im the proudest mother ever i also couldnt keep count on how many times a day he hugs and kisses me and says he loves me he adores his 3 sisters and yes some times they argue and he hits out but so does his sisters and cousins i use time out for all my kids and he,s no differernt so id just like to say to you leaha  i would hate to have a friend like you asking a question like that on this forum seems to me that your just mad some one hit your chid sure that can happen anytime in life regardless of down sydrome or not !!!!!!
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Mother of a 14 year old son with Downs. His first 4 years we lived in NJ, he went to public school but was in a self contained class with about 4 kids and 2 teachers. While in school he was friendly, was learning and succeeding in all aspects. Things between my ex and I weren't working out so we seperated and I relocated to Georgia. Now in Georgia he is having a lot of behaviorial problems and though I am seeing some of it at home, the majority of it is going on in school.....or so the teachers say. He's had tube put in his ears 3 times so far so he does not speak too well and his vocabulary is very limited so it's frustrating to me as a parent because he can't explain to me what's wrong and I know it's frustrating to him as well because no one understands him. My problem now is that his teacher is suggesting meds for him because she thinks he has ADHD. I took him to the Dr. and she said she doesn't see him as being that hyperactive child in any of his visits and I told her at home he is just a child (he has his good days and he has his bad) but it's not to the extent as they are making it seem in school. To me, I feel like the school is just trying to make their job easier because since being here he fell behind as far as education but they don't have the programs and stuff like they did back home in NJ because they say the town is "poor" I do all I can for my son....I work with him everyday because I know he has the potential and I know he can do the work, but I am also a single mother that works and he needs to be in school. So am I wrong for not wanting to medicate my child because they think he has ADHD? Also he really doesn't have a defined and consistent schedule in school like he does at home, and I know for a fact that is an important thing when it comes to children with Downs......consistency
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My DS brother is the best brother I've ever had.  He has gone through stages but now we are experiencing one of his worst stages.  My brother is 27 and two years ago his moods started to change to the extreme.  He became withdrawn and wasn't communicating with family as much as he used it.  He was over weight and stopped eating and lost over a hundred pounds and then he started having seizures.  These past 2- years have been tough on my mom who is his primary caregiver.  He has begun eating again and is starting to put back on some weight and is beginning to interact again... But now he has started to have, unprovoked, violent attacks towards my mom.  He will slap her, hit her, and throw things at her.  This past week his violent attacks have been daily.  Today, they went for a walk.  My mom was in front of him and they were just laughing and enjoying the day, suddenly he attacked my mom from behind and he had her in a choke hold, lifted her up, and threw her onto the the pavement.  10-seconds later he stood there saying nothing.  My dad walked them home (just a few houses away) and my mom cried and doesn't understand the attacks.  I'm scared of my brother now, who normally is so loving and fun to be around with but know I don't trust him with mom who is an active 65 years old.  The doctors keep changing his medications, for moods, etc. but his seizure medications are constant.  We have put away all knives, glass, or heavy objects he can get a hold of to throw at my mom.  He can now only use plastic cups and spoons and he can't be alone w/ my mom anymore and I'd adviced to my parents to lock their door at night since my dad was awakened early in the morning last week to my brother hitting him with a clothes hanger.  Surprisingly! My brother is very lovable and kind and has touched all our lives... But now I can't trust him and I'm scared for my moms safety.  I don't want to think about putting my brother in a "special home" and quite frankly, my mom would not allow it.  But I don't know what to do, I don't know who to turn to and the doctors don't either.  I found this site as I was Googling "D/S violent attacks" hoping to find some sort of answer.  Any advice, suggestions, or referrals is desperately needed.   Thank you for giving me this opportunity to talk to a community of families who have a loved one w D/S.  At the very least, now I know we're not alone.
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Unfortunately, in my experience, the Drs have NO answers. And to be honest with you I have doubts as to whether they really want to put the time into. Down's people, like others with disabilities are not high profit. But also it seems even those who are "more profitable", their only answer to anything these days is to drug you. What gets me is they do this with no scientific evidence that these drugs will work and not to mention the long list of health dangers involved. I have experienced a similar situation with my son, although not as bad as yours and no seizures, thank the Lord. I would suggest dietary measures, such as eliminating GMO's, BPA, any of those frutroses (RE: high frutrose corn syrup), major reduction in sugar, less meat and more vegetables, fruits. And in Vegetables, fruit, more raw than cooked. Maybe look into a high quality colon cleanse.There is also other detox's that can be helpful such as a heavy metal cleanse using a good grade Chlorella. I suggest Dr. Mercola's sight and he has good quality for fair pricing. You'd be amazed at what this may accomplish. BUT if anything try these 2 things. 1) Coconut Oil- a teaspoon 3 or 4 times a day. Has been found to reverse alzheimers symptoms. Not saying it has anything to do with that, but point is, it aids brain function. I have found it to be helpful with my son, and it has many other health benefits also. 2) Get an herb (and suggest Dr. Mercola) called Ashwangandha. Also found to be very effective for brain function and I have also seen improvement with my son.
But if he is on meds, check about any side effects of any of this with the drugs he may be on. My hope is he'd be able to come off any meds. You and he will be better off. But if he does he'll most likely have to be weaned off.
You'd be surprised at how these things may make a difference. And it's all safe and what the heck, you have nothing to lose to try. Have lot of other thoughts. Let me know if I can share anything else with you. Not an expert, but my trial started about 5 years ago and I have exhausted the medical community and only results I have gotten have been in this area. At the very least, he will be a healthy man.
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Reading your post made me think of my situation. My daughter just turned 15 and she is having behavioural problems especially after she started a new class in school. I think any kind of change makes them act out, more so because they are not able to express it verbally. She has hearing aids in both ears and wax builds up quickly so most of the time she's not hearing well. You are right, they need consistency and more care. I don't think its a good idea to give medication unless you are sure about the ADHD. Why don't you try other schools? Or consult a behaviour therapist?
We are looking for a psychologist, but they are so expensive....
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I am actually replying to myself. I have just found information that could prove valuable to anyone here that has been dealing with extreme behavioral issues. The use of Polyethylene Glycol (under a poplar brand name which I will not mention but sure all what it is) has been known to cause major issues with many. The regular use of it and/or over dosing of it can and has caused many to become toxic from it. Eventually causing major health issues and even death. One of the many side affects including destroying the kidneys is "neuropsychiatric events" which include  autism, dementia, depression, schizophrenia, multiple sclerosis, Alzheimer’s and Parkinson’s diseases, and similar others. Also the danger of the following.  (let me some this up, most if not all behavioral issues I and many have asked about are among those "events that can occur)
"● Nephrotoxicity: PEG has been connected to nephrotoxicity, a euphemism for kidney damage and it is counter-indicated for patients with kidney disease. This particular “side effect” is most likely related to the hydrolyzed (separated in water solution) molecules of ethylene glycol.

● Urticaria: PEG may  cause allergy-related hives (urticaria) — raised red welts on the surface of the skin. Children are particularly susceptible to hives, and face a grave risk of anaphylaxis — a life-threatening allergic reaction that may develop within minutes or even seconds after ingesting a PEG-containing laxative. Links between PEG and urticaria have been documented as far back as 1991.

● Esophageal perforations: Also known as Mallory-Weiss tear, esophageal perforations associated with polyethylene glycol electrolyte lavage solution have been reported as far back as 1991. These tears and related bleedings may occur in the mucus membrane of the lower part of the esophagus, or upper part of the stomach . "
Research has also shown the FDA is aware of this BUT has decided not to address it at this time. Do you're own research and form your own opinion, but as for me, my son is done with this stuff.
I post this because I have been through a literal hell with my son sliding further away into bad behavioral issues which has imprisoned him and me now for a 5 years (Now 23) with NO answers from Doctors. except to dope him up.
This with a boy, now 23 who was previously the light of any room he entered.
I post this because I want others to know what I have found and if you have these problems and your child uses this poison (which is a form of ethylene glycol, which is anti-freeze) then you may want to look into this and discontinue and found something safe and natural. I trusted Drs that this was safe, but should have known better.
I also post this because I know that constipation is a regular issue with many down's children (especially considering many having dealt with Hirschprungs disease) and this is the drug of choice to deal with it.
So maybe this will be a help to someone.
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Avatar_m_tn
did the nutrivene work for your son? Is he still taking it, can anyone shed a light on this high dose vitamin?
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Avatar_m_tn
did the nutrivene work for your son? Is he still taking it, can anyone shed a light on this high dose vitamin?
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Avatar_f_tn
I do not use the nutrivene any longer. Mostly due to finances. I have several other things that I use that are seemingly or more benefit to him. I like the Nurtivene and would continue to use it, but with it's cost (which is not unreasonable) coupled with cost of everything else and tough economic times it's hard to pay for so many thing. I would push throught the expense though if I had seen any difference from it's use. Used it for several months with no visable results. The company is very reputable and the main fella will talk to you and has good info on down's kids. Has one himself if I remember correctly. I'm sure from a nutrional point it is a great product because it is packed with good stuff and safe. Just had to choose and went with the things that seemed to have at least some affect. For me it is dietary, lots of water, elimnate sugar, use quality products like organice coconut oil 3 tsp 3 X a day, apple cider vinegar tblsp in glass of water. Elimnate toxins much as possible, (safe soap, shampoo, no flouride toothpaste), Vitamin B12 and D spray under tongue twice daily, Ashwagandha ( herb that helps with brain function) and supplement with Spirulina  6 tabs once a day with food and lastly a nutrional product from Halleluah Acres (ONline) which is called "Barleymax". It is a green superfood product you put tsp in water. Has great healing properties.
. This combination with diet, no junk food or drinks has given me some visable result. Also found on Natural news.com's store and porduct called "Oxy Powder" that takes place of toxic Polyethylene glycol quite well and safely.
Hope this helps.
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Avatar_m_tn
We have been there as parents of an adult who has Down S.  Do the best you can for the safety of others and your loved one.  No one knows what causes the outbursts.  And if you need help, get it from the community.  It is a long, difficult road.  We placed our son after he was out of school.  He is 44 years old and still has outbursts each year about 4 or 5 times.  Love him but this causes grief as a parent.
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I work as a live-in caregiver. My employers are a retired couple; my job is taking care of the husband, who suffers from senile dementia and several other medical conditions; also he has no mobility in his legs. Their 47-year-old D.S. son (Johnny) also lives in the house; he is fairly high functioning and works out of the house at a plastics factory that has special accommodations/coaches for the developmentally disabled.

I function as a member of the family, love them very much, and take part in household decisions. I have been assigned to somewhat of a leadership role with Johnny. My problem is that I find living with him increasingly frustrating. Basically, there is nothing in this house that is off-limits to him. He is given freedom to rearrange closets and cabinets; though he does not cook, the kitchen counter-tops, cabinets and drawers must be arranged according to his (very illogical) dictates, or he has a tantrum and makes life miserable. It is becoming difficult to have guests because Johnny always creates some kind of a scene -because people are in the house rearranging "his" things. He is disrespectful and verbally abusive to his elderly father, which really puts my back up; his mother tells me not to worry about it because the father is senile and does not realize what is happening. I disagree.

Frankly, I think Johnny deserves a firm rebuke in these cases. His mother spends a lot of time "sweet talking" trying to get him to agree to behave better; she seldom requires him to apologize for his rudeness, and she seldom effects a change in his behavior. Basically what I see happening is that Johnny keeps all of us focused on what he wants all of the time; if he does not get it, WE pay. Everything is fine, he is very sweet, until his dictates are not followed -then watch out. He is overweight, and meal times are very unpleasant because he becomes belligerent if he cannot have seconds/thirds/high calorie beverages/dessert. I dread sitting down at the dinner table because I know my leadership will be challenged and his mother will end up giving in to him to avoid his belligerence. Johnny seems to know this, also. Ditto for the daily shower; it is always an argument between him and myself with him appealing to mother until she overrides my decision. He has become quite adept at making me look like the "mean" villain, and often creates situations/stretches the truth, trying to cast me in an unfavorable light, which I find stressful. I am frustrated because I have the leadership role without the authority to back it up. His mother tends to override my decisions because I do not make all my appeals to him in the sweet, fawning way that she feels is best for Down Syndrome. I am frustrated that she lets him speak to me and "dad" in such a rude and disrespectful way, yet shields him from any consequences his "fighting words" would normally carry. It is like he throws a bomb, then goes running back to mama for protection. You may think this seems petty, but when you are a man and have to live with this 24/7 you get quite demoralized by it.

Mother tends to draw Johnny in very close to her and side with Johnny against Dad and myself. Mother and Johnny enjoy discussing and analyzing other's shortcomings. Somehow Johnny's behavior in never Johnny's fault. It is always dad's fault or my fault or a "misunderstanding" on Johnny's part. I can frankly see that some of this misunderstanding and lack-of-hearing is on-purpose.

His mother bristles when I use a firm tone of voice with him, but frankly I think he needs a firmer hand. When his mother is out of the house he becomes VERY respectful. But as soon as she comes home he starts in with the whiny, tattle-taling, mama's-boy routine -until mama's blood pressure has risen to dangerous levels and I am ready to leave. I am at a loss. It is nearing the time that he returns home from work and I am dreading it, as usual.



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My brother is 15 years old who was diagnosed with prader willi down syndrome and scoliosis. It has came to the point where my family is hopeless and has no choice but to send him to a home for treatment and care. I cannot express how much my brother means to me just like any family feels about their loved ones. I do not want him to leave he is too little to be separated from our family and put in a home. we blame our self for the background we come from because we lack education, my parents are too young, and no patience for a child with down syndrome. This might have affected his behavior since we do not know how to care for him properly yet we've done our best. My family follows a strict diet for him and is active yet that doesn't stop him for acting aggressive. My mom had meeting once a week for the past year with a psychologist to teach my mother skills to improve his aggressive behavior but recently he continues to act violent and it scares me, that he won't be able to stay with us much longer. I sometimes think to myself why must god make these children suffer? sure they're special but why should they live their whole lives in medications after medications or surgeries throughout their existence. where can I find answers? why must I feel so helpless? it makes life seem less scary after living your life with a child that shouldn't be born with this syndrome plus scoliosis which deteriorates every bone. Don't misunderstand me, their beautiful children and deserve to live like anyone else and I should focus on the things he can do and keep positive but when that doesn't work and we are forced to leave him at a home what then?
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I saw a post you made in 2010.  That was a long time ago.  I have an 11 year old son diagnosed with Down Syndrome and autism.  His ABA therapist wants me to try focalin to help him focus.  He is not hyper but does have a short attention span.  He is starting some behaviors such as dropping to the ground when he doesn't want to do something.  He is not agressive but is strong and can also act silly and kick when he wants to.  I really don't like the thought of medication.  Any thoughts?  I am trying to be open about this but it is hard.  
Kathy Kelly
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My sister has a 4 year old downs child who is extremely aggressive. He attacks his younger sister by pulling chunks of her hair out, hitting her with heavy objects and I even caught him approaching her from behind, about to put his hands around her throat. They are no longer left in the same room together but even under supervision, he looks for any opportunity to do her harm. No-one else in the family is at all aggressive so this isn't 'learned' behaviour. We are a very close family and I see them regularly so none of this is assumption based on ignorance. He, of course, can be a lovely little boy but that can change at a moment's notice. Social Care are very unsupportive, believing that he should be treated the same as a non-Down's child which would put him and his siblings in danger. I know that most DS children are very loving but there are a lot whose aggression is the dominant side of their personality. Please don't assume that all DS children are the same, these families need help and support, not chastisement for being 'bad parents'.
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Hi I am new to the group,
I have too much going on and I dont know what to do Im trying to stay strong for my son he has DS and has just turned 4yrs, Im a single parent and I have 4 other children ranging from 24 down to 4, my ex husband has narcissism and Its been 4yrs he continues to drag me through the courts, w
he only has one son to me and no other children! this was my second marriage, he first took my son away at 9mths old while i was still breast feeding, I had to take him to court to recover my son! it was a lengthy process and when i thought things would get better he then again had me in court for trying to swap daycare centers, I found myself served with a restraining order!! after that I though it was over but once again he has taken our son and not returned him, he is now accusing me "flogging" and abusing our son, I have only ever smacked my son when he would throw a tantrum and break things which has been increasing of late. My ex hus has lied in affidavits and didn't do him any good before!! like one lie was that he said his bond was stronger with our son and that he would have to come home and change soiled nappies that i was neglecting my son  when asked by the judge how many days he worked my ex said 6 days per week and the judge said there was no way his bond could be stronger!! my son was also born with low muscle tone and was always constipated so the soiled nappies were also a lie.
I also believe my son maybe on autism spectrum but my ex wont admit he has behavioral issues he says to the court he only has tantrums while in her care! I have to rely on professional reports from my sons early intervention and daycare, they have appointed an independent children s lawyer for him, I am now looking for a fulltime job as my son is still in my ex care and I have lost my pension and carers allowance to stay at home to care for my son, I have no income and have to represent myself in court, all I can do is cross my fingers and put my faith in the system.  
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Help me, I have a 4 year old, soon to be 5 in September with Ds and recently diagnosed with autism. He loves to bite, intelliquently he understands everything happening around him, he copies off of everyone as well.he used to only bite girls and now he is biting his peers, boys. He would go months without biting and then it comes back full swing. I need help please
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My daughter is 33 down syndrome, till the age of 32 we did not had any problem with her she was behaving like a normal child. since last 9 months she has become different when she wants something or does not like somehting she puts her full hand in the month deep inside. now we have to put the mask on her face. she does not talk much and we have to ask each time if she want to go to wash room or eat that also she is very stuburn and does ot listen most of the time due to leazyness she wets on the bed.  need help as it is very difficult for us to manager. we are all the time with her and dont leave her alone still she say she is sad.
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