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5 year old son with chiari
my 5 year old son had arnold chiari type 1. he had such bad headaches and symptoms that he had surgery within a month of finding out he had chiari. then we also found out he had a tethered spinal cord, which caused him to be incontinent. so they did surgery for that too- in the same day they did the chiari surgery. my son has had fewer headaches but his memory is off. he is getting ready for kindergarten and can't remember how to spell his name let alone count and abc's. is this normal for chiari even after surgery? also i think its odd my son drools a lot and he gets very embarrased. he doesnt realize he is drooling until he sees it on his clothes or the ground. its like he cant feel it on his face. he also cries a heck of a lot for a 5 year old. he cries over everything and tells me he feels out of control. i dont know anyone who has ever had chiari or has a child who has it. so im hopeing someone can give me some ideas on if this is normal for chiari patients. thank you so much.
I keep thinking of some little things that may help.
As far as the drooling goes we had a girl in our class with some disabilities and she drooled also. Her Pt would ask us to remind her to suck in and swallow. Maybe getting into the habit throughout the day of some gentle reminders for him to suck in and swallow may help. This is something that he may have to learn to do himself where we just automatically do it. This may have to be a learned response for him at this time. he may not feel the need to swallow but you can see that he does in fact need to swallow just remind him to suck in and swallow. remind him that when he is talking he needs to stop every so often and suck in and swallow. Just be careful he does not suck back to hard and choke on the spit. Even when he is playing his video games or watching TV remind him to swallow.These are things that if done over and over they can become a habit that he needs to do.
Chadry
As far as the drooling goes we had a girl in our class with some disabilities and she drooled also. Her Pt would ask us to remind her to suck in and swallow. Maybe getting into the habit throughout the day of some gentle reminders for him to suck in and swallow may help. This is something that he may have to learn to do himself where we just automatically do it. This may have to be a learned response for him at this time. he may not feel the need to swallow but you can see that he does in fact need to swallow just remind him to suck in and swallow. remind him that when he is talking he needs to stop every so often and suck in and swallow. Just be careful he does not suck back to hard and choke on the spit. Even when he is playing his video games or watching TV remind him to swallow.These are things that if done over and over they can become a habit that he needs to do.
Chadry
I seen that you had your son I believe at hersey? Have you ever tried Du pont's children's hospital in Delaware? They have very good chiari specialists there. That is where I now take my daughter. I know there is another person that posts here on this board and his son had the operation by the same doctor my daughter sees. His name is Dr. Campbell.
Just thought i would throw that in in case you were ever thinking of a second opinion.
Chadry
Just thought i would throw that in in case you were ever thinking of a second opinion.
Chadry
Hi,
i am sorry to hear about all the difficulties your son is going through.My daughter is 13 and she has chiari but not to the degree as many others. Her main problems are dizziness and occasional headaches that are actually getting better with the medication she is on. It is a mild blood pressure medicine she takes at bedtime.. I know that your are very scared and concerned for him. I feel the same way. She was saying that she wants to go hang out with some friends today and I always encourage her to do things but then when she does I worry so much.
I used to work in our school district with special ed children. That is where I got my injuries and I now have DDD in my back and neck so I can also relate to many problems people have here on this board with my neck issues.
Anyway I wanted to comment on the autism thing you were talking about. There are so many degrees of autism.Every child is different and many of the signs can also be different.
I will say a few things but that does not mean in any way at all that he has autism for sure. These are just my comments as to what I have experienced working with autistic children. You have to remember that we are also talking about a 5 year old who recently went through some very traumatic times.
Many autistic children will rock to soothe themselves. Some flap their hands and have other little things they do like rocking back and forth on their feet and some will rock from side to side.. Out bursts are very common also. Whether it be crying or screaming or both, especially in an uncomfortable situation. They do not know how to really express what they are feeling at the time. That is a release for them. It can be short lived or it can last for quite a bit.
Sometimes having pictures of the common things he forgets can help. He may be able to work better with a picture board.Every day tasks and familiar faces. This way he can always ask what their names are which may help to retain the things he forgets easliy. Taking pictures and putting them where he can see them on a regular basis Ex. on the refrigerator or in his room where he can ask when needed what is this or that.Velcro works great for this. he can remove it if necessary for assistance. One of the most important things though is working on his ability to sit quietly and concentrate. Picking a time of day that is best for him and I hate to say it but making him sit for short periods of time and doing things like flash cards or writing. Even if it does not seem to be helping it is. You may stretch this out through out the day. A reward like his video game at the end of the session. Tell him what he is working for before you start his session. Sometimes giving him a token of some sort during the session helps him to see that it is almost over and then he can play his game. But he can only get the token when a task is completed. This can be like a penny board. A penny that gets Velcroed to a card. Maybe 3 pennies to start. When a task is completed you place a penny on the card. Asking him to try and write and few letters then he gets a penny.This is a visual for him to see. Some children need that. It is hard for a 5 year old to know when the time will be up.
These little things may help whether he has autism or not. I know these things are used with children also that do not have autism.
I believe that my grandson is slightly autistic but his parents do not want to face it yet.I think when he gets to school they will be told what i have observed myself. He is going to be 4 soon.
the sooner that children are worked with the better. It gives them the ability to learn to make the adjustments.
I hope that I have helped a bit and like I said it does not mean he is autistic. You always have to take into account everything that your son has been through already. The learning things can be used on anyone.
Take care and God bless you and your family.
Chadry
i am sorry to hear about all the difficulties your son is going through.My daughter is 13 and she has chiari but not to the degree as many others. Her main problems are dizziness and occasional headaches that are actually getting better with the medication she is on. It is a mild blood pressure medicine she takes at bedtime.. I know that your are very scared and concerned for him. I feel the same way. She was saying that she wants to go hang out with some friends today and I always encourage her to do things but then when she does I worry so much.
I used to work in our school district with special ed children. That is where I got my injuries and I now have DDD in my back and neck so I can also relate to many problems people have here on this board with my neck issues.
Anyway I wanted to comment on the autism thing you were talking about. There are so many degrees of autism.Every child is different and many of the signs can also be different.
I will say a few things but that does not mean in any way at all that he has autism for sure. These are just my comments as to what I have experienced working with autistic children. You have to remember that we are also talking about a 5 year old who recently went through some very traumatic times.
Many autistic children will rock to soothe themselves. Some flap their hands and have other little things they do like rocking back and forth on their feet and some will rock from side to side.. Out bursts are very common also. Whether it be crying or screaming or both, especially in an uncomfortable situation. They do not know how to really express what they are feeling at the time. That is a release for them. It can be short lived or it can last for quite a bit.
Sometimes having pictures of the common things he forgets can help. He may be able to work better with a picture board.Every day tasks and familiar faces. This way he can always ask what their names are which may help to retain the things he forgets easliy. Taking pictures and putting them where he can see them on a regular basis Ex. on the refrigerator or in his room where he can ask when needed what is this or that.Velcro works great for this. he can remove it if necessary for assistance. One of the most important things though is working on his ability to sit quietly and concentrate. Picking a time of day that is best for him and I hate to say it but making him sit for short periods of time and doing things like flash cards or writing. Even if it does not seem to be helping it is. You may stretch this out through out the day. A reward like his video game at the end of the session. Tell him what he is working for before you start his session. Sometimes giving him a token of some sort during the session helps him to see that it is almost over and then he can play his game. But he can only get the token when a task is completed. This can be like a penny board. A penny that gets Velcroed to a card. Maybe 3 pennies to start. When a task is completed you place a penny on the card. Asking him to try and write and few letters then he gets a penny.This is a visual for him to see. Some children need that. It is hard for a 5 year old to know when the time will be up.
These little things may help whether he has autism or not. I know these things are used with children also that do not have autism.
I believe that my grandson is slightly autistic but his parents do not want to face it yet.I think when he gets to school they will be told what i have observed myself. He is going to be 4 soon.
the sooner that children are worked with the better. It gives them the ability to learn to make the adjustments.
I hope that I have helped a bit and like I said it does not mean he is autistic. You always have to take into account everything that your son has been through already. The learning things can be used on anyone.
Take care and God bless you and your family.
Chadry
Hello nwhit23, I'm so sorry to hear about your son and his tough journey with his Chiari.
My daughter had both surgeries and she is twenty years old but she is still my baby. I think no matter at what age this hits your child it affects you so much because me I would do anything to let her live a pain free, symtoms free life. I wish there was a prayer that goes directly to Jesus himself. My daughter at her age was diagnoised and had the surgeries back to back like your son and I'm sad to say she has a long road to recovery, her battle started in March 09 and she is still in the hospital today. I pray for the day I talk to her and she tells me she is having a good day. She's in pain constantly, the headaches are strong at times and her arms feel very tired and numb, her memory is short, that a problem for her returning to school, the scars, her tongue is swollen and she drowls at times, her speech is off a bit, the way people in the hospital see a picture she has of herself and they ask her if that is her, she has no weekend plans with her friends like she used to and I can go on. The emotional roller coaster is over whelming sometimes. She in physical therpy and I pray she will get
stronger every day.
I wish I could give you some magic words but I don't know of any. I feel your pain as a mother. I'm so sorry for him and you and your family. Sometimes I wonder if the docs would have discovered this when she was younger, would she be better by now?
I will pray that your son will be.
Have you tried to work with him at home with memory games, writing, spelling, reading his mind has so much developing to do and if you work with him I think he can accomplish great things. Hey try those teaching video games:-)
My 11 year old son has traits of Autism (Asphergers syndrome)(spelling) he has a hard time staying on task, been in speech therpy since age four, reading is a challange because of his consentration and speech delay, his writing is not that if a typical 11 year old. He can figure out those game consoles and computers, very smart with them and math. He's great with hands on things rather than visual and what he eats is important to. His routines are very important, if you make changes he has a hard time with that and depending on what it is.
Keep strong momma and hang in there, please hug your baby:) Tell him my daughter said she read your story about him and he helped her. She going to be strong just like him. God bless.
My daughter had both surgeries and she is twenty years old but she is still my baby. I think no matter at what age this hits your child it affects you so much because me I would do anything to let her live a pain free, symtoms free life. I wish there was a prayer that goes directly to Jesus himself. My daughter at her age was diagnoised and had the surgeries back to back like your son and I'm sad to say she has a long road to recovery, her battle started in March 09 and she is still in the hospital today. I pray for the day I talk to her and she tells me she is having a good day. She's in pain constantly, the headaches are strong at times and her arms feel very tired and numb, her memory is short, that a problem for her returning to school, the scars, her tongue is swollen and she drowls at times, her speech is off a bit, the way people in the hospital see a picture she has of herself and they ask her if that is her, she has no weekend plans with her friends like she used to and I can go on. The emotional roller coaster is over whelming sometimes. She in physical therpy and I pray she will get
stronger every day.
I wish I could give you some magic words but I don't know of any. I feel your pain as a mother. I'm so sorry for him and you and your family. Sometimes I wonder if the docs would have discovered this when she was younger, would she be better by now?
I will pray that your son will be.
Have you tried to work with him at home with memory games, writing, spelling, reading his mind has so much developing to do and if you work with him I think he can accomplish great things. Hey try those teaching video games:-)
My 11 year old son has traits of Autism (Asphergers syndrome)(spelling) he has a hard time staying on task, been in speech therpy since age four, reading is a challange because of his consentration and speech delay, his writing is not that if a typical 11 year old. He can figure out those game consoles and computers, very smart with them and math. He's great with hands on things rather than visual and what he eats is important to. His routines are very important, if you make changes he has a hard time with that and depending on what it is.
Keep strong momma and hang in there, please hug your baby:) Tell him my daughter said she read your story about him and he helped her. She going to be strong just like him. God bless.
COMMUNITY LEADER
Hi Nicole....wow he really seems to have some other issues going on.
It sounds with the way he responds that it could be epilepsey (sp) my cousin was like that at a young age, but he is fine now.It could even be food allergies......
It may be too soon to see results or he may have some residual effects that will not go away.
Was his dr a ped chiari specialist??
"selma"
It sounds with the way he responds that it could be epilepsey (sp) my cousin was like that at a young age, but he is fine now.It could even be food allergies......
It may be too soon to see results or he may have some residual effects that will not go away.
Was his dr a ped chiari specialist??
"selma"
my son had both the chiari and tethered cord surgery on march 5, 2009. he had his skin graph reconstruction in april. the skin graph never healed, it ate the skin on his head to the skull. it was about a nickel size hole in his head. they had to clean his skull and fix the hole and close it. he went o hershey medical center for all this. his pediatric neuro doctor is dr. iantosca. he is a very nice doctor. my son is 5 years old and he has never had the patience in wanting to sit still and learn. some friends are saying maybe he also has autism, but i dont know anything about that. when it comes to memory he gets so upset with himself. he is afraid people will make fun of him in school. he starts a summer school program very soon. we dont see his nerologist until august to do another 3 hour MRI which he has to be asleep for. then they will see how his brain healed from the surgery. before the surgery he could remember things a lot more than he does now. its to the point when he cant remember family members names. luckily he hasn't forgotten mommy! but he always whispers in my ear for me to tell him peoples names so they wont make fun of him. now my concern is that when he goes to school and cant remember his teachers name or friends names and also drools in front of people, how it is going to affect him for his first year in school. he also is super sensitive. if someone laughs at him he will cry and scream out of control and thats when the drool really comes flowing. i have told the doctor before some of this, but it still was really close to his surgery so he said wait n see in a month, that it should be alittle better by then. well it been almost 3 months and i think it is getting worse. i dont know about autism or other disorders he may have or if this is all chiari. i am so new at all this. thats why i came on here. he still wakes up in the middle of the night screaming with headaches, they just aren't as intense as before. before surgery he would get them all day long and would lay on the ground in a store and rock himself back and forth to try to relieve the pain. he went through bottles of medicine a month. this is a very crazy emotional roller coaster our family is on. and it was like i had no one to talk to about it. other kids look at my sons scars and think something is wrong with him. it is so sad. he has about a 6 inch scar down his head and neck and about a 3 inch thick scar on the side of his head from the skin graph surgery, and he has about a 4 inch really thick scar on his lower back. he is the sweetest little boy ever. he will do anything for anyone. whenever ur not feeling well, he is the first person at your side rubbing your head or back. he is a cuddly 5 year old. and he is smart when it comes to video games. thats why alot of people think he is autistic because he cant remember things and he cant even write one letter, he just scribbles. but when it comes to video games he is a whiz. no one in the family ever taught him how to play either, thats the thing. he learned it by himself. so i am sorry for writting u a book. but thanks for letting me vent to you. lol. hope to hear from you soon.
Nicole
Nicole
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Oh I can sympathize with ur little guy. I have found I also drool a little bit, but I do catch it, but I only had the PFD....not the TC.....I will be checked in 6 months to see if I need that as well.
It appears ur son went thru quite an ordeal all at once.....how long has it been?
It can take a very long time for u to see all the results from the surgery and there may be some issues that will not be resolved.There is no cure, only treatment to prevent further progression.
I can related to the feelings of being overwhelmed...and being highly emotional...the part of the brain that herniated regulates our balance and our emotions r also affected.
As far as forgetting how to spell his name....I would have to ask how long prior to the surgery did he have that ability and how long since the surgery?
I tend to forget things also......may I ask, where he was treated?
Have u ask his surgeon about ur concerns?
"selma"
Oh I can sympathize with ur little guy. I have found I also drool a little bit, but I do catch it, but I only had the PFD....not the TC.....I will be checked in 6 months to see if I need that as well.
It appears ur son went thru quite an ordeal all at once.....how long has it been?
It can take a very long time for u to see all the results from the surgery and there may be some issues that will not be resolved.There is no cure, only treatment to prevent further progression.
I can related to the feelings of being overwhelmed...and being highly emotional...the part of the brain that herniated regulates our balance and our emotions r also affected.
As far as forgetting how to spell his name....I would have to ask how long prior to the surgery did he have that ability and how long since the surgery?
I tend to forget things also......may I ask, where he was treated?
Have u ask his surgeon about ur concerns?
"selma"
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