New here. Psych problems with mito

[Guest guest]

Hi. I am new here, just discovered this group. I am very excited to

have found you!

I have an adopted daughter (now 16) with mitochondrial cytopathy, not

particularly well differentiated in that it doesn't seem to fit the

common phenotypes like MERRF, MELAS, KSS, etc. Her symptoms have from

birth mostly consisted of myopathy involving all peripheral muscles

(worse in neck/shoulder girdle) and anorexia (which is a really bad

thing considering this is a metabolic problem to begin with). Keeping

her caloric and fluid intake up has been a lifelong challenge: when

she eats and drinks she is ambulatory and well, when she doesn't, she

becomes non-ambulatory very quickly. She is on a plethora of meds,

which we started back before we had ANY local medical support (we had

a tentative diagnosis since age 3 but no one knew what it was or how

to treat it nor made any suggestions beyond informing me she would

die). The support we had was from the United Kingdom RTMDC (Royal

Trust for Mitochondrial Diseases in Children). I corresponded via

snail mail with a wonderful person, Greene, from that

organization who back then gave me the ONLY information I was able to

get on this disorder. So she is on what is now the standard regimen

of CoQ10, creatine, carnitine, Biotin, B2, ACES, and Selenium. The

first three made the most dramatic improvement for her, suddenly she

could walk, and lately she even walks without the walker. Finally we

have a specialist, Dr. Saneto, at the local Children's hospital who

validates and even adds to this regimen. Mito is all he does.

The current problem is depression. Until last night when I was

searching the net I never knew her psych problems were the result of

this disease process. I guess I " knew " that mental problems came with

some mito cytopathies but I never made the connection. My dtr just

spent a week in the local psych ward following a weak suicidal

gesture and they put her on Lexapro. It gives her really unpleasant

side effects and the psychiatrist there has never heard of

mitochondrial disease. I'm not even sure this Lexapro stuff is SAFE

for her (heck I didn't know not to give her TYLENOL until last year

when Dr Saneto told me it is mito-toxic) but as of this morning I am

taking her OFF it and getting her into the specialist as soon as the

office opens today. If this is a normal progression of her illness

then he'll know better how to handle it.

So after this lengthy introduction anyone else here who has a

child with psych involvement, and if so how is it handled?

kj