CHIARI I Post Surgery Any body who received OT or PT

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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CHIARI I Post Surgery Any body who received OT or PT

Postby Momofthree » Fri Feb 29, 2008 5:51 pm

Hello,

I am new to the board but not the sight. I have gotten a lot of information regarding CM1 from this sight. We live in Delaware and one of my 7 year old twin daughters was diagnosed with a CM1 in September and had Decompression Surgery end of October. The reason the Surgery was done so quickly was she had constant excruciating head pain since August and as the time passed she showed the "brain Fog" you described as well as huge balance and co-oridnation issues. She would be walking and just drop to the ground for no apparent reason. She had to be pulled from school due to she just could not concentrate.

The surgery immediately took away her head pain she was like another child. However, her fine motor and Gross Motor skills are severely behind her peers. She was never the most co-ordinated or the best at handwriting but especially her gross motor skills have gone backwards. None of her teachers ever mentioned a concern regarding her abilities but now we are 4 months post surgery and there are noticeable delays in her fine and gross motor skills.

Has anyone's children experienced this and did they get OT and PT and if so dd it seem to get better in time?

One additional question. My daughter is a twin and I have a son who is 4 who has Autism Spectrum Disorder. I am especially concerned about my son due to many of the subtle chiari symptoms that my daughter displayed a year ago before the pain became excruciating would be very difficult for my son to communicate to me due to his limited verbal ability and they could be considered just part of some of his other issues.

Any suggestions on how to monitor my other children and their possibility of also having a Chiari Malformation.

Thank you for any advice and for taking the time to give it.

Colleen
Momofthree
 
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Postby brianfsmom » Fri Feb 29, 2008 9:01 pm

Hi Colleen

I would imagine the only way to monitor your son would be to have an MRI done. There has been shown to be a bit of a correlation between autism and chiari, but that doesn't mean he has it; just that you might want to find out at some point.

I did want to comment on the fine/gross motor skill decline - this doesn't sound right to me. The goal of surgery should be at minimum to stop progression of symptoms, and if they are continuing to worsen, I would start with a neurosurgeon or neurologist before looking towards PT/OT. My son went for PT and OT after surgery but it was more to bring him back up from where he might have fallen due to the chiari being there for so many years.

There could be a simple solution. What do the doctors tell you?
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Postby Momofthree » Sat Mar 01, 2008 6:06 am

Hello,

Thank you for your response. At our next Neurologist Appointment for my son I will definately bring it up.

I do not think I described the situation the best. Maura, was always a little uncoordinated and her fine motor skills were always a little behind but never significantly. Never received any concerns from teachers etc. She played soccer last spring and did pretty well. I would say the sever symptoms and the beginning of her decline in Gross Motor and Fine started with her Excruciating Head Pain. She had been showing mild Chiairi symptoms since December with headaches and sinus infections and had what I call her "drunken Sailor" day in April which all were blamed on allergies or a weird virus that made her dizzy for a day or so. Her symptoms were so off and on and she was able to handle them that I really did not push the subject with the Doctor till the day her head began hurting so badly that she laid on my bed holding her head and just cryed for over an hour and a half. I took her to the ER and they gave me Tylenol with codeine and told me to follow up in the morning with our Pediatrician. We did and they diagnosed her with Migraines and wanted us to keep a Diary of her headaches and keep her on the tylenol with Codeine till the Headache went away. Well it never did and we saw her condition worsen every day. After about 5 days of this and my pediatrician kind of clueless I took matters in my own hands and called my son's neurologist and lucked out and got a cancellation appointment in 2 days. She ordered an MRI and that is when the CM was found. The more time that went by the worse her condition seemed. She would hold on so tight to my hand when she walked somewhere(usually she was way ahead of me) She was so tired and definately had the "brain fog". Her balance was not good and that is when I noticed her inability to do things she used to be able to do and how much her handwriting declined.

After lots of tests and trying different meds the surgery was determined the way to go. She had the surgery end of October. I would say her Gross Motor and Fine have not decreased since the surgery they just have not really increased. Her balance is better but a lot of her gross motor takes a lot of concentrating. For example, her teacher said that when she asked the kids to clean up what they were doing and Maura was at a listening center it took her a very long time to clean up due to she had to pull plugs out of things and wrap up things. The teacher felt Maura was trying her hardest to do it as quickly as possibe but could tell she struggles with it. As well as cutting and writing.

I really did not bring it up with the Doctor till now due to I was hoping over time it would get better and the surgery was so successful for her pains not a headache since and her personality is back. She is such a "ball of fire" a 24/7 talker and basically just loves life and when her symptoms were so severe it was a totally different child. So I am so grateful to have her back and out of that pain but at the same time am so scared that she may have to live with this deficit the rest of her life and I will come to terms with it as I have the Autism but the last thing you want for your children is to see them struggle.

I have asked the Doctor for a letter in able to try to get the services from the school because apparently OT is not a stand alone service and she would need to have a disability or fall into the "other" Medical category.
She is doing great in school otherwise. Even though she attended school through a lot of this I feel like she had missed almost 3 months of school and she has been able to catch up well. The first month was tough but now she is doing well with the exception of her handwriting which is such a huge part of 1st grade.

How long did your son receive services? Was it through his school?

Thank you again.
Colleen
Momofthree
 
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Postby brianfsmom » Sat Mar 01, 2008 4:40 pm

Hi Colleen

Ohh, that makes a lot more sense, then! Definitely I would think she could benefit from OT and PT - you may want to try to get your insurance to cover it as part of rehab from the surgery. That's how we did. Unfortunately in this respect, my son wasn't bad enough for the therapists to understand how to help him, but I can definitely see him in that clean up situation you described.

His fine motor skills have always been weak, and I think they did decline slightly just before surgery. He has a slight hand tremor, too. I tried to get him just an OT evaluation in the school and they denied it. I was mad, and just decided I didn't want to deal with them. That's when I got it on my own, and insurance paid for it - although they capped the number of visits.

Gross motor-wise, he is also behind, and it did improve, but never will to the point of the other kids. He can run, but he is slower than most. He can ride a bike, jump, climb, swim, play basketball and baseball, but he can't do tricks on his skateboard. Sure, you all say, why would I want him to? Well - I don't. But the other boys have made fun of him because of it. It's tough being a 12 year old boy with chiari. I have also planted fear in his mind so that he won't try daredevil stunts - but he truly lacks the balance and coordination that some of them have.

But you know what? They don't ALL have it, regardless of chiari or not. So for your daughter I think you should be glad you "have her back" and hope that the other things will come in time. Even if she doesn't get to the point of the others, she will find ways to adapt and get by.

Also, we have a 504 plan for our son at school, so that they have to accommodate his shortcomings. It's helpful, but it's not always followed. It hasn't been a huge issue so far, and it also lets me keep him out of activities that I think might be dangerous.

Hope that helps. Good luck to your daughter. I hope that therapy will help her to get back some of her motor coordination.
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