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

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Postby heymom07 » Tue Nov 15, 2011 11:51 pm

Hi - I just joined tonight.

My daughter (age 6) was just diagnosed with CM 1 and Syringomyelia. It was a fluke that it was found on the MRI. Our family doctor referred us to Mayo Clinic in MN and I have sent all her records there. We are just waiting to hear back from them for an appointment.

It seems that she might have had more symptoms when she was younger but now doesn't seem to have them. When she was younger she had tremors (we never found anything out on this - the experts thought it was just because she was excited), she drug her right leg and her right hand was clenched (we did PT), she has had eye surgery for an eye that went inward, tubes in her ears for continuous ear infections, reflux, some gagging (I always thought it was self-induced), etc. The main complaint now is that she has some incontinence and has loss control over her bowels. We have spent 2 years with a urologist and gastroenterologist. Oh, another thing that I don't know if it is related, but I did read about it, is that she has always had this deep voice. She is an extremely active kid - gymnastics, trampoline, running, constant movement, probably on the verge of hyperactivity - she's a busy kid. She's never complained of pain.

Now that I've been looking into this, I'm reading that it is important to see a chiari specialist. Can you please recommend where your kids have gone? My husband and I talked tonight and we are thinking we probably need to check into going to see someone who is very familiar with this because we've already had two doctors miss this (and one neurologist that one doctor consulted with who said not to worry about it).

Anything you can tell me with your experience with this I will really appreciate. Thank you!!
heymom07
 
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Joined: Tue Nov 15, 2011 9:06 pm

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