new hear--14 yr old with cm

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

Moderator: pmaxwell

Postby Patti » Sun Oct 21, 2007 9:49 pm

Hi Medgirl. I am new to this site and am happy to read your post. Our son was diagnosed with Arnold Chiari Malformation when he was 5 years old. He is now 8. Our son's diagnosis was also a fluke. He was in the hospital with a neck infection and after several MRIs the docs told us they found something else. We had no clue what they were talking about. He has not had any symptoms or problems before or after the diagnosis. They have just told us the "warning signs" to watch for. But our doc did advise us to keep him away from high contact sports such as football. Luckily, he had already started playing coach-pitch baseball and loves it. I want to say good luck to you and your son with the doctor visit this week. Please post again and give us an update.
Patti
 

Postby medgirl47 » Mon Oct 22, 2007 5:24 am

thank you i will post as soon as i know anything after the visit on tuesday.
medgirl47
 

Postby chadry » Mon Oct 22, 2007 8:21 am

Hi my daughter was diagnosed this year with CM. She is eleven and very athelic. She did Kararte for years and became a black belt. I cringe now when I think back about eveything she has done. It took a few years to get her diagnosed with this condition. We had just signed her up for softball when we got the news. The doctor did not have a problem with her playing softball, we just don't let her slide into base. Just in case. He told us no high contact sports which could result in a neck injury.

I would love to hear about your visit to Duponts because we are from south jersey. I took her to childrens hospital in PHila. to see Dr. Sutton there. I was pleased with him. He is the chief of neurosurgery there and seemed extemely informed about CM. He has preformed hundreds of surgeries for this conditon. I am looking for a second opinion though. Our ped. gave us a name at duponts but the doctor does not seem to be listed there anymore. I had to wait a while though to go for this opinion becaus e I had lost my job and insurance. I recently get new coverage for my kids so I am on the look out for a second opinion.
I will be looking to your post on how the visit went and if you could please give me the doctors name.
I was very afraid to let my daughter do anything after she was diagnosed but I know she needs to do these things as long as we keep the chance of injury as low as possible.
She started a new school this year and is middle school now. I met with the nurse and once again I had to tell her about the condition. The nurse in her old school did not know about it either, but I will say they read up on the condition and informed themselves. This nurse distributed a fact sheet to all her teachers telling them about her conditon and her limitations. Since she is a little older and she understands the condition we have decided to let her decide in gym class when and if she needs to pull herself out of any certain things they are doing. I felt so bad giving the nurse the note from the doctor about CM because I did not want her pulled from gym She loves gym. As long as she does not participate in any tumbling or high impact games (and neck rolls that make her dizzy) we have left it up to her. I feel better that she can be like the other kids.

Good luck with your upcoming appointment and I will waiting to see what you have to say. I live near the Del. Mem. Bridge. Do you live near this area.
chadry
 
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Joined: Sun Oct 21, 2007 8:45 pm

Postby brianfsmom » Mon Oct 22, 2007 8:51 am

Hello

I do the same as chadry with my son and school. Noone at the school knows about chiari here either, and honestly they don't seem terribly interested in learning. I impress on my son that they do not understand and he has to make reasonable choices.

The staff are willing to work with his limitations, however. In order to protect him from his own testosterone, I have on his 504 plan that he may not use any of the weight machines in the fitness room. He can do any of the cardio ones, though. With supervision and light enough weights, I think the machines would be fine. I just don't want to put that burden on the gym teachers.

As far as other exercise, all the teachers are fine with him saying he can't do this or that because it hurts his back or his neck. They don't give him trouble because he really gives it his all when he does participate.
brianfsmom
 
Posts: 186
Joined: Thu Jul 26, 2007 2:31 pm

Postby medgirl47 » Mon Oct 22, 2007 2:12 pm

i live in seaford de. and the doctor that i am going to see is Jeffery Campbell. he is the chief of surgery there. yes i wil let you know how is goes. my son also loves gym, his cm is 10cm and he has 2 syrinx. you hear so many conflicting stories about what the doctors do, some do surgery some dont. my stomach is in knots from all this. my son is taking it great he says.
medgirl47
 

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