when do we worry

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

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when do we worry

Postby cluelessinAZ » Sat Nov 13, 2010 10:40 am

I haven't posted to the message boards for awhile. I have CM/SM. I was dx'd 3 years ago at the age of 30. The reason I am posting to this area though, is because I am worried about my 11 year old daughter. I know that there is no definitive studies saying that CM can be pasted down generations, but there are more and more diagnoses in families. My daughter isn't really presenting with many problems, but she is dealing with chronic abdominal pain, that nobody can seem to figure out. And she has had problems with nose bleeds over the last couple of years. I watched a Discovery Health show that was about a young girl that was eventually dx'd with CM, and her first and major presenting problem was chronic abdominal pain. So I wonder if this is a common symptom in the pediatrics? And if it is, when do I worry, and start pushing the doctors to run MRI's?

Dx'd CM/SM 01/07, DDD, minor scoliosis, Klippel-Feil, hypoplastic vertebrobasilar system,Occipital Neuralgia, mild cervical stenosis, several buldging/protruding disc through c-spine & l-spine, mild osteoarthritis, Hashimoto's Disease, FMS
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Re: when do we worry

Postby chrisw » Sat Nov 13, 2010 11:27 am

I actually thought that the congenial CM link has been proven. Regardless, her risk is quite higher and I would push for a MRI now, preferably on a 3T (3 Tesla) machine. I would always suggest no open MRIs.

One thing i would consider and talk to the doctor about would be medication for thre MRI. At age 11 she is probably a bit older than they would provide drugs for the test but an anti-anxiety medication would probably help her stay calm and not move.

Good luck diagnosing this, I hope it turns out to be something small and simple!

SM, Chiari 0 (Rosner), Diagnosed 8/08 after car accident 6/08, Vitamin D deficent
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Re: when do we worry

Postby lttutrow » Sat Nov 13, 2010 6:21 pm

Regarding the familial links, we've been told that anyone else in the family with symptoms should be scanned to rule it out. My son has abdominal pain. We were told that kids often have abdominal migraines.
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