7 yr old. AWLS, Paresthesia, Dystonia

[rnorys]

Hello, I have a 7 yr. old boy.  Over last few months we are struggling for diagnosis ideas.  He presented with visual disturbances (colored spots, zig zag, objects) and has progressed to include, chronic dizziness, blurry vision (both complete loss and partial bottom vision obstruction) rapid eye blinking with vision loss during episode, and low lft. arm and leg paresthesia and right hand forearm (squashing), bilateral toe paresthesia, I noted slight tremor in right hand while writing (he said his muscle feels tired).. He has failed with neurontin 100mg, periactin 7.5ml, klonopin (sleep disturbances, sleep walking, talking, etc.)  We DC those meds and went to Depakote 125mg 2 pills BID and added prednisone.  He was diagnosed with complicated migraines, and recently developed symtoms (ceiling falling in, walls coming in, floor shrinking) Neuro did in a joke manner said Alice in wonderland syndrome.  

3 months ago MRI-neg, 2 EEG's Neg,

just this weekend restarted the Klonopin with the depakote,  after restarting klonopin with 30 mins he went into a severe "dystonic reaction"  admitted to hospital.  Our neuro has suggested that it may not be medication related.  Dystonia was generalized, he was unable to walk for two days.  4 days later we are seeing jerking improvements.  All meds at this point have been DC for last 4 days, to clear his system.  Neuro dr. recommended Lyrica for management after a week has passed without meds. 25mg 1 pill AM, 2 pills PM

Looking for differential diagnosis ideas.  even off meds he's chronically dizzy, seeing spots, vision loss, paresthesia daily,  he has generally one or two headaches a week.

All the migraine meds have failed.  Over the weekend while in the hospital neuro did CT-neg, CBC, CMP is fine.  we have pending results for wilson's (doesn't have liver or renal symptoms)  and other blood test they did not tell us what they were.  

He had as infant, GERD, full term preg 4 lbs., fundo was done at age 2 along with GT placement for FTT, oral motor apraxia, speech delay until age 3, malnourishment.  We've not used GT for 8 months.  

IDEAS?  We have wonderful Neuro, but even he says he's not afraid for 2nd options and ideas

[Larristd]

Has he seen infectious disease?  Does he have any body aches or joint pain?  Do you have pets?  Has he had a lumbar puncture?  Has he had any rashes?  Has he been to a tertiary medical center yet?  Here is a link regarding Lymes Disease, but there are other conditions to consider which are infectious as well.  

http://www.columbia-lyme.org/

TL

[ILADVOCATE]

Some of what you are describing is strange as I have tardive dyskinesia and Klonopin helps on that. It is highly unusual Klonopin cause a dystonic reaction as it is often used to treat dystonic spasms. I would take care (unless of course medically neccessary) to avoid any medication that can cause tardive dyskinesia or worsen dystonia (for more information google "Patient Education Tardive Dyskinesia", also check what he took in the past). That said what you describe goes far beyond focal dystonia or tardive dyskinesia. I was tested for Wilson's Disease before I was diagnosed with tardive dyskinesia (ruled out) and with the disturbances you describe in vision that could be a possibility. An opthalmologist would note specific spots in an eye test as Wilson's Disease is an inability to metabolize copper properly so it builds up in the system and becomes toxic. There is medication for that now though and safer medication than in the past. However, the neurologist might best refer you to a movement disorders specialist. There are a whole host of neurological disabilities that they would know how to diagnose and treat specifically.