Hello! I’m a mom of a toddler looking for advice. My 2 year old has been waking up with hand tremors since about 10 months old. His episodes have increased in intensity and frequency, but are normally triggered by waking up and also stress (when he’s afraid or scared). We’ve done blood work, MRI, and a sleep study, but the neurologist is passing us off to a geneticist. In the meantime, she suggested it could be episodic ataxia. I’m wondering if any other parents (or those suffering themselves) out there have dealt with anything similar!
I don’t know but I would think that a referral to a pediatric neurologist would be best.
I should’ve clarified that we’ve been working with a pediatric neurologist that has now referred us to a geneticist!
Mary, if you use the search feature of this site, you may find some useful information. Click on the magnifying glass icon in the blue band above, and enter “episodic”.
I’ve also modified your profile a bit to make your story a bit clearer. Hope that’s ok, if not, you can make changes by clicking on your avatar (upper right) and then on the gear icon. Don’t forget to scroll down to the bottom to save your changes!
Seenie
When there’s no clear diagnosis, referral to a Geneticist can be the best course of action. Don’t think you’re being palmed off
You might find it helpful to correspond with other parents coping with similar situations. Log onto Facebook and search for ‘Pediatric Cerebellar Atrophy Support’
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