when to have your child checked

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

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when to have your child checked

Postby dana_8142 » Thu Mar 27, 2008 2:19 pm

I have recently (today) been diagnosed with chiari malformation and syringomyelia, which really sucks, but my biggest concern is for my 2 year old son. For a few months he has been complaining that he hears a buzzing in his ears, his doc saw nothing upon examining, he was sent to an ENT, they saw nothing, now I am wondering if he has inherited my disease. Should I try to get him an MRI or should I wait to see if more symptoms arise? And what symptoms should I loook for? How much time does he have, can this kill or paralyze him? What do I do - please help.
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welcome

Postby Sara » Thu Mar 27, 2008 3:21 pm

Hi-
First thing to realize-Chiari is not a fatal disorder. Paralysis is a late complication and generally only occurs in untreated cases.

Symptoms in children tend to be scoliosis, choking and swallowing problems, headaches. Many children are incidently diagnosed with Chiari and that does not mean they need surgery, so even if an MRI showed a diagnosis, treatment might not be needed. Some people go their whole lives without developing any symptoms at all.
Please request a free information packet, http://www.asap.org/infopacket.html and review some of the literature at the ASAP.org website. http://www.asap.org/articles/main.html

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Postby KyliesSis » Thu Mar 27, 2008 4:58 pm

Hey there,

My sister (who is five) was diagnosed with Syringomyelia in February, and it was incidental. She had a really stiff neck and a high fever, and that's why we sent her to the doctors, and he went from there. Most kids go years before they find out. When I researched Syringomyelia, it said that most people showed symptoms at 25-40. So, IMO, you shouldn't wait for symptoms. The symptoms that my sister had, we were told, weren't related to her SM.

This isn't something that progresses in a matter of days, so you don't have to worry too much. ( I know you're going to worry until you find out, but try to stay positive) Book an MRI if you can, and have them do an MRI of his brain, cervical, thoracic, and lumbar-sacral sections of the spine (the whole spine). You need to have the MRI of the whole brain to find out if he has CM, the cervical and thoracic for SM, and the lumbar-sacral to rule out Tethered Cord.

This is what we did and are doing. Anyways, hope this helps. Good luck!
Proud Sister of 6 year old Kylie
SM C3-C4 and T10-T11
Tethered Cord Syndrome
Spina Bifida
Scoliosis
Kyphosis
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Postby angie7 » Fri Mar 28, 2008 8:52 am

I watch my twins like a hawk for any signs. So far, they dont have any. I did have them checked for scoliosis at 18 months and that came back clear so that was an excellent sign to me. I was dx with scoliosis when I was just 3 months old and I believe this is where alot of my problems started. They are 2 now and can tell me if they have pain or any problems, and so far, they havent complained of any.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Re: when to have your child checked

Postby donnadriver » Sun May 04, 2008 12:36 pm

Hi my name is donna i was diagnosed with chiari in 2004 and i had the surgery in the nov i started to notice my 9 year old getting headaches and pins and needles and knew straight away she had it. I faught for months to get her checked and finally after telling me i was a neurotic mother i got anappology she did have it she got refered and operated on then my next daughter started having problems and i thaught here we go again she was tested and yes she had it too then my 2 youngest stared they were tested and they also have it so dont wait get your little one checked as soon as you can and fight if they wont take you seriousely i did if nothing else it will put your mind at rest and you can do what it takes to stop it from causing too many problems or it will stop you worrying however the test comes back.
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Re: when to have your child checked

Postby brianfsmom » Sun May 04, 2008 7:45 pm

Angie! Your twins are TWO? I remember your posts and your fears when they were about to be born! so glad to hear all is well.

I have also opted to take a wait and see attitude. As my son is the only one we know if with chiari, I am not rushing my daughter in to be screened. If she ever showed signs or had reason to be tested, of course I would. But I treat her just as I would if she were a normal child, with the assumption that she is. She is almost 15 and can certainly let me know if there are any unusual goings-on.

As for the ear-buzzing, I'd keep an eye on it. It is true that it's unlikely to progress from ear buzzing to paralysis without an extremely long road in between. I would make sure the pediatricians keep a close check on reflexes and any other neuro signs. That would be a key indicator for me.
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