Desprite mom needs help!

[monand]

My son has been labeled with adhd, ocd, odd, bipolar and sleep insomnia. I am a single mother of two and am tired of looking for answers on where to turn for my son who is 9 years old. He has been in a mental hospital three times since first grade hads started  and his screaming and severe outbursts are to much for social outings and even going shopping. He has a sensitivity to most of these meds and we have only found Concerta and Serquel that helps him. But everytime they up his dose he seems better but is complaining of feeling upset to his stomach.  He is also on Clonidine and Serquel for sleep. Please some one give me some advice!

[cutiegirl]

Have you tried Ritalin or Dexamphetamine for the ADHD? I have ADD ( ADHD without the Hyperactivity) and Ritalin worked pretty well for me. I know that lots of people are against it, but it's not that bad. Dexamphetamine is what I am on now and it works really well too. Also, are you taking your son to a psychologist/psychiatrist for treatment/proper diagnosis for the ADHD, OCD and ODD? A child psychologist can determine whether the ODD is just part of the ADHD, and how bad each condition is. I recommend you talk to your GP or public heath nurse. Good luck  

[monand]

Concerta is ritalin just time leased, not many people know that. My son was diagnosed in kindergarden. My son has received many services ever since he was 3 we started noticed his problems by the age of 2. He just had this energy that we could not control. We had to have extra locks put on front and back doors and child alarm systems and window locks, my son has problems with safety. He always managed to get through the locks and disable the alarm systems when he was 3. He managed to get my dead bolt off the front door with a screw driver.  We got so frustrated with how much work it was trying to keep him from escaping the house. The police station at one point told me to get him a identification bracelet.  He is extremely smart and bright child, and he is very good with his hands.  But I have struggled for years and finally gave into medication in first grade. I pulled him out of the school district and enrolled him in a school called Vitalistic Therapeutic school Charter school where he received medication treatment and therapy. But He is now in fourth grade and the school only went up to third grade.  He screams a lot and I can't leave him alone with my two year old daughter. He now is in the hospital getting his medication reviewed, but he is complaining of upset stomach from medication. I have no help from my family, and am turning to others for help.

[Rozanna]

Hi, I will start out by saying I’m also a single mom of three. My oldest that is 7 years old has been also labeled with BP, OCD, SID, and ADD.  He is currently on Seroquel 200mgs, and depokote. We have used clonidine in the past when he was much younger I think the mg was 1mg and we ended up using 2 mg before we stopped it. So I know where you are coming from.  There are many medications we have used I must admit I hate strattra it made my son sick. His stomach hurt so bad that he couldn’t walk, he also complained of being dizzy, and feeling sick. What’s going on with your son, behavior problems?  I know where you are coming from with being homebound because I wouldn’t dare take mine out with some back up. (Another adult). It was to the point where I would have to throw him in a buggy and run him out of the store because his fits were so loud and he would throw things. My son Micah didn’t respond well to medication but he is on Depokote sprinkles which also control his seizures and seroquel. He would never sleep unless he was on sleep medication. In the past we have used effexor, lithium, prozac, and risperdal. And several ADD medications.  I must ask you just because I know it has help my son in many was has he every been tested for SID? Sensory Integration Disorder! How does he do at school? Micah is worse at school than at home. That’s where I have the most trouble out of him, I have trouble with him but I have him on a daily routine so he knows what comes next. Well I know I didn’t give you much advice but I’m here if you need me. Also I will leave you with a very good SID website. I know you don’t want another label but on your child but if he does have this disorder O.T will help a lot also there is no medication for it. Just a lot of O.T and playing!  
*******************************************www.sensory-processing -disorder.com*****************
Rozanna

[monand]

Thank you for the new input I will read into SID a little more, but I always thought that my son had some type of autism because he was bad at home and worse in school just like your son, but after he attended the therapeutic charter school I had him in it took him two years to finally adapt, then he didn't want to leave but the school ends in 3rd grade. He still has problems with transition changes and thats where problems come up again, problems at school and problems at home, he gets worse all around again. Every time I feel were making progress he takes a step back again. He is very social but he holds alot into himself, unless I sit there and pound it out of him will he tell me. His newest thing is the screaming fits and bad lies. He has never been tested for SID but its always a possibility, I never stop looking at others things for him, cause of considering he seems much worse then most children with adhd and bipolar alone.  Rozanne at what age was your son diagnosed with SID and how did they come to there conclusion of it?   Thanks Monica

[monand]

Also I took notice your son has OCD how is he with that, I know my son is really bad with everything from food i make him to toys he plays with that he lines up and snaps if they get moved even if I kick them by mistake. He snaps at his sister if she graps anything of his and tries to be the boss of her cause he wants to control her,  he has a problem with control issues and pretty much he wants us to live around him. He doesn't see me as an authority figure but rather he tries to be equal with me, and i have been trying for years to break that gap with him, I did have rap around services at one point with him but that didn't work well with him cause of his father.

[Rozanna]

The best way I can explain this is just imagine your at work, your in a meeting, the color of the walls are a bright orange, your work assignments are written everywhere on the wall also on the wall are bright colorful art. The man giving the meeting has a loud voice and also there is a woman with a high pitch voice speaking in a different language all at the same time. People are coming in and out getting snacks, warming up food. Some had smelly food like fish others had foods like tacos.    How would you feel? This is what kids with SID deal with all day longs. Smells that we might thinks smell good smell awful to them.   Noises are loud or not loud enough. I will stress to you to get him checked out ASAP it won’t hurt anything to see if he does have this disorder. I know with my son it was a miracle to find out that the reason for some of his actions were because he needed deep pressure. (For example the reason he was hitting, kicking, or slapping, wasn’t because he was bad instead he needed deep pressure.) Just like pinching he should have been a crab because he loves to pinch (Hard) so bubble wrap gave him the same feel as if he was pinching someone.      

Calming activities that I use with Micah are:  swinging, rocking in a chair, fidget toys, bear hugs, snuggling in his body sock.

Micah also is a biter even at the age of 7 he still bites. So with that its called mouthing activities to decrease biting.  Chewing appropriate things such as:  straws, rubber tubing, bumble ball.  (You can also use twizzlers, pretzels, and chewing gum)
  
Around the age of two is when he got diagnosed with SID.

OCD and Autism came up when he got stuck on the color yellow (everything had to be yellow). He has to stop at Pals to get breakfast, or the day is ruined. He don’t like to be around people he like to spend time with his family but the rest of the world doesn’t really matter to him. He is kinda in his own little world.

Food brings out the tears! He gets stuck on certain foods. Right now its chicken nuggets. He only drinks cherry 7-up. He switches from chicken nuggets, to corn dogs, to cheese potatoes. All food has to be a certain kind same box as before if the box changes he won’t eat it. I can’t trick him with different kind of food, even though chicken nuggets are chicken nuggets, he will know I don’t know how but he knows.  Mac n cheese has to be shell kind yellow box velveta.

A lot I have just learned to deal with when he was two doing this I didn’t think much about it I guess it was around age 5 when his addictions started to drive me crazy.  

School is really bad right now. He got suspended today because he kicked his principle in the face. They want me to but him in a mental hospital but he’s not as bad at home as he is in school. That’s a whole other story !

Well I hope this info helps you out ..
                                    Rozanna

[monand]

Thank you so much for the input, I think this will help me, and try to get him tested.

[Ebean]

Hi My son is 6 and we and the therapists were reluctant to label or diagnose him as anything, but because many of his symptoms of putting things in order, cleanliness, fussy eater etc.., which I see you have explained as OCD; we were told to picture him on the PDD (Asperegrs/Autism) spectrum because SID and ADD and even BP all have symptoms that are whithin this this spectrum. many of the help and advice and ideas given for PDD kids are also useful for  all the others.
my son was on meds already for BP and even Epilepsy and the DR ruled out BP after seeing the responses.
By the way there is so much info available for SID and as long as you experiment, or get a professional to, there are amazing results that help with the kid's frustration and anger. At first you have to do the activities to him by force, (I do not know if it will be the same for an older child), but eventually the kid is able to do it themselves. As by now you probably have read info on  SID, you will see it has a very "hands on" treatment - and since it is sensory based it is very effective treatment.
Well if this helps you both great - if not, I'm another Mom chatting about my special needs kid and airing my view.
Ebean

[bonyj]

Hi My daughter is 11. She has been labled almost everything by this point. Her doctors and therapist don't know what more to do for her.  She isn't responding to medication or behavior therapy.
We have been doing this for 5 years. She has pimarily been labeled as bipolar and PDD. At this point they want me to put her in a residential program.  I just don't know what to do.
Joan

[Rozanna]

My heart goes out to you. I know how your feeling and I wish that I knew the answers for you but sadly I don’t.  I was told that my son would probably need residential by the time he was in his teens. Its a really hard chapter but I will share something with you that I have never told anyone you will not find this posted anywhere on any forum.

When I was 12 years old I landed in a mental hospital! And I was diagnosed with BP. I was placed on lithium (which made me fat) depokote (which made me sick to my stomach) and something that starts with a T for sleep.   I was on a really bad roller coaster and I didn’t even realize what I was doing to my family. By the time I was 14 I had been placed on probation and was court ordered in the mental hospital for cutting, drug abuse, and “bad behaviors”.  Everything was in the court hands when I was 14, my doctors from this hospital wanted me to be sent off to a residential treatment, but My parents where fighting to keep custody of me. I remember my parents looking at me so confused I would say sorry constantly and then go back and do the same thing over and over. I don’t remember a lot about these times in my life but I did do some really dumb stuff.

I would destroy my room. My moods changed so frequent that it wore me out I remember wanting to die. I was so tired of all the ups and downs. I didn’t have it in me to really kill myself, so I looked at it like if I die ok and if I don’t ok. I remember I hated school so bad. Most of the time I refused to go and if I did go I would find away to leave.  I refused to talk to therapist and stay on my medication.  Right around that time I was placed in a therapeutic school setting, which in ways was good. I fount out that year that I was smart I remember having straight A’s. I was never consistent with medication and then I got where I wouldn’t even take the medication. I remember little things would set me off. My brother chewing gum across the room would put me in a rage. I learned to “cover” up some of these issues smoking pot made me relax it didn’t really get me silly just made me feel normal. By the age of 16 I talked my parents into letting me get a job, which at this time I had learned how to bull **** anyone including my parents, therapist and my psy. Doctor.  Life was great this was one of my best years, till I hit bottom.

I did well with my job the only bad thing was I got mixed with the wrong crowed but I fit into this crowed so well. Parting every night. I had a manager that would call my parents and ask them if I could work over when I really didn’t have to, just so we could go out. That was my biggest down falls. I met a man who was a lot older than me he was 31 and I was 16. We hung out a lot and before to long we were smoking weed, doing coke, popping pills, and having sex.   I had a bad car wreck while on coke, nobody got hurt, but myself and the tree that I plowed into (thank god) but that’s when life started to change.

My parents was so upset to find out I was on coke, of course I didn’t tell them the doctor at the ER is the one to break the news. I again fount myself in this dark place where I hated to be (the mental hospital).  After several weeks I was able to bull **** enough to return to my job, and again this guy started to come back around. By the end of my 16th birthday I wasn’t doing drugs (I had been drug test weekly, even daily if my parents thought I was being weird) and I wasn’t doing anything too bad. I was going to school and I decided I wanted to make it in this world.  I had broke off all contact with this man, but after doing so I fount out I was pregnant.

Since is was a minor ,  I had to get my parents involved so I told them I didn’t tell them with who because I was afraid my dad would kill this man. I checked out ok with the doctor, when I was in about my 4th month of being pregnant I fount out my son was going to be Down syndrome. Which the doctors told me to aboard him and have a clean start. I didn’t do what the doctor said I decided he was mine and no matter what I would love him just the way he is.  When he was born he was 4 pounds and 5 ounces this is the day my life changed for good I promised my son that.

As I held him something came over me and for the first time I wanted treatment I wanted him to have a normal life even if that meant not having me as a mother. I worked very hard to get where I am today.  I finished high school (top in my class) also I finished 4 years of collage and I learned a big lesson don’t let people/ doctors tell you what you are there are many successful people in the world with BP and I’m one of them. If it weren’t for my parents support I don’t know where I would be right now. Life sucks sometimes and I have learned to live with what I have. Drugs have been a struggle there are so many times when I still to this day want a drink or want to use drugs but I know that all of those things come with big, BIG, BIG conciseness I can’t socially drink or do drugs, I have learned this lesson early in life.  And with dealing with my son I feel for him because I know how he feels, I know that what your child is going through suck, I don’t think anyone wants to feel happy and then switch to mad as if someone is holding a switch over there head flipping it (to happy to mad to silly to rages). There are many people who give up on this disorder and end up killing themselves, or someone else, but there are also many that learn how to deal with the symptoms that come along with this disorder.
I know that when my son was about 2 years old (I was shy of turning 18) I would wonder what my life would be like if my parents did send me off.  And sometimes I still do. In ways I wish I had sent off because at the time I didn’t realize what my future could of held for me some of my dreams are no longer with me and some are still a work in progress.


I have learned how to deal with my anger I go to the gym I can walk around the block, I can write how I feel, and I learned these things. When I feel a little wild I look at my children and think of what there life would be like without me and I never want them to get stuck in my mistakes. All of these things I had to learn I had to learn how to deal with all of my issues.  Most people don’t even know this about me. I have learned not to talk if I’m not going to say something nice I have learned not to talk to someone when I’m angry.

All of these things your daughter will learn soon. Stay constant with her show her how to be patient and praise her for everything! This really works. There are so many times that I don’t know what to do for my son but I try and not beat myself up over it rather I try and learn how to help him out.

I would like to know what it is that your daughter is doing / or not doing that is making doctors question whether she should stay with her family or be placed in residential treatment. Have you tried O.T for sensory issues? Do you feel like the doctors have tried every option that is out there?  Please let me know what kind of behaviors you are currently working on with her I will help you out as much as I can!!!!

One last thing that has worked well with Micah (my son) is making everything into a game. I will race him to get dressed, I will race him into the house, anything that he doesn’t want to do I turn it into a race.. Try and see if that helps!!!

Sorry so long………………..RozannaJ

[vanhoutte37]

I know where your coming from.  My son has always been different too me.  Everyone else started noticing something was different when he was 18m - 2years.  He even try to choke someone at the age of 2 1/2.  He acts definition BP.  The problem I'm having myself is he is was on clonidine for aggression and Trileptal for his moods.  Well, near Thanksgiving we had a problem getting his Trileptal and he was out for 3 days.  OMG!  He went manic insane.  So, the doctor thought that the clonidine wasn't doing anything and she wanted to take him off.  Well, we took him off and WOW!  Now he is acting more like an ADHD kid.  They thought a couple of months back that maybe he had both but they decided he didn't.  Now, I'm wondering if he does have BP and ADHD.  He has drove me nuts all week.  Has anyone else out there have something like this happen before?

[bonyj]

Thank you. There are so many days I feel like no one has any idea what my life is really like. Even the therapists  don't really understand.  She  has OT at school for sensory isssues. My insurance wont approve her for a pivate therapist.  She has been on probably every medication on the market.  Anxiety meds make her manic.  Lithium made her a zombie.  She is very aggressive. She angers easily and then clears a room. Throwing desks and chairs over, screaming, cursing, hitting her head with her fists, sometimes kicking holes through the walls. Over the weekend her younger sister didn't want to play with her, so she punched her so hard her sister lost her breath. Tuesday she destroyed her classroom because her teacher asked her to wait a few minutes to do something. She threw every desk over, hit and kicked the teachers, pushed a desk into a child he couldn't breath,banging her elbows on the floor really hard, punching her head, throwing anything she could grab,ripping down posters and artwork, telling the teachers she was going to shoot them with a gun.
Later that day telling her sister she was going to poke herself in the eye with a pencil.
The therapist don't know what other kinds of therapy to use . We have tried play therapy, nutured heart, reward charts, family therapy, hospitalization once- they turned her into a zombie. They want to try residential- one to take her off all medications and see how she really is, in a safe environment. Also because something just dosen't click with her. She is very impulsive,she dosen't  use her strategies when she is upset, but can tell you what she should have done later. I have very mixed emotions about this recommendation but I don't know what else to do for her.
Thanks for listening.