Weakness in Face/Arm, Hypersomnia, New MRi

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

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Weakness in Face/Arm, Hypersomnia, New MRi

Postby TiredMom » Fri May 28, 2010 9:30 pm

It's been a while since I've popped in. Preston saw several doctors, including a neurologist, at UTHSC in Memphis as part of a research study (related to his genetic issues) a couple of weeks ago. The neuro pointed out Preston has weakness on the right side of his face and in his left arm. They referred us to a new guy in our local area (we've had ongoing probs with our pedi-neuro at home... he completely missed this at Preston's last visit and that was just before the trip to Memphis). The new guy agrees there is definite weakness. He also looked at Preston's sleep studies and he feels Preston's dealing with a variation of daytime hypersomnia in addition to the apnea. He sent Preston off for a new MRI and now we're in a waiting pattern again. The new neuro feels the changes in tone are definitely Chiari related. He's concerned the sleep issues may be related to a change in size of the cyst that sits on Preston's pineal gland (which impacts melatonin production). Ugh.

There is a bright side to this, I guess. The new neuro works in the same hospital-based clinic as our neurosurgeon and is on good terms with him; so they're comfortably sharing info back and forth. He's also great at advocating for his patients, so I don't think he'll let these changes slide.
Mom of 9 yo boy with Chiari I, Pineal Cyst, Microdup. Synd. 15q, Mito. Disorder, Ctrll. Sleep Apnea/Sleep Mvmt. Disorder, Asperger's, Hypotonia, Aphasia, GAD, OCD, occipital headaches, etc. Visit at http://caringbridge.org/visit/prestonbyrne
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