Hello, I've stumbled across this group looking for answers and/or support. Any suggestions or answers towards helping my daughter (11 years old) would be GREATLY appreciated!
Quick background.
DOB. 2009
-2012 to ongoing leg and ankle pains (mostly right side)
-2013 (7 years old) left 2x 10 min. episodes of left side facial droop, numbness & drooling, slurred speech
-Nov. 2017 - focal aware seizure (Prior to seizure nosebleed, headache, stomach ache)
-Nov. 2017 - CT scan normal, EEG normal, MRI shows 0.4cm possible cerebral cavernous malformation on the left side of pons peripherally differential diagnosis include neoplasm or demyelinating lesion.
Neurologist is certain symptoms are unrelated to possible CCM as the seizure & past facial droop occurred on the same side as the lesion - (As a parent I am so confused)
-2017 to current - leg pains, tingling, headaches, sometimes severe with vomiting, fatigue, severe difficulty falling asleep, poor quality of sleep, sometimes emotional for no apparent reason, irrational, weird bouts of laughter, pale, stomach aches.
-2018 - 2nd MRI same findings still inconclusive.
Mar. 2018- Bloodwork showed low iron and low vit D - prescribed iron suppliments and vit D - currently she s taking these. No change in symptoms just more of them.
My daughter has a 3rd MRI booked for June 2018. Hoping for answers. I'm not sure if there are things I can do in the meantime. Dr,s' pediatrician & neurologist have said proceed as normal seem unconcerned and I am feeling like a paranoid parent. I just feel like something isn't right. Dr.s' suggested her symptoms are likely puberty (she hasn't started menstration) and low iron but I feel like something else is going on...
Any help, ideas, support appreciated. Thank you in advance.
JL