5 month old with myoclonic jerks

My 5 month old granddaughter was diagnosed at
6 weeks with Leigh's disease of the mitochondria. Her MRI showed lesions on the brain and some brainstem abnormalities. She
also was having seizures, manifested in constant crying for sometimes up to 7 hours.
Her team of doctors started her on Co Q 10,
thiamin, vit e and c, Tegratol, antibiotic for what they thought might have been a virus in her brain and Carnitor. The Tegratol controled the seizures. They tested blood and tissue
samples but all have come back negative for the Leigh's disease. DNA and other blood levels are fine also. She has manifested another type of seizure they call myoclonic jerks.They are not real bad but she may have
30 a day. None while sleeping. They did a second MRI and gave her B-12 during the MRI, the seizure still showed, but on that MRI the leisions on the brain were gone and the abnormality in the brainstem was improved.They started her on Clonazapam for the jerks. It has helped some, but she is still having jerks.The doctor wants to put her on Topamax but said the Tegratol could interfer, so he has taken her off the Tegratol. This is her 3rd day without it. No reoccurring seizures.
Her MRI did show that the brain had some
shrinkage also but they say the brain is growing again now. She is not able to hold her head up yet and hasn't reached for things. She started PT last week and starts OT this Friday. Therapist are encouraged. She is 17 lbs.& seems to be thriving. She is cooing and laughing and to look at her you would not
think there is a thing wrong. In your opinion
is there anything else we should be giving her
vitamins, etc. or anything else we can do to
help her. She responses to visual stimulus,toys,etc, but is there something else we can do to help give her a jump start
developmentally. Thank you.  Susan

[CCF neuro MD MM]

I think that your grand-daughter seems to be in good hands at the present, it seems that the appropriate investigations have been done and the various avenues of anticonvulsant therapy are being explored in this very difficult case.
There really is no point blindly throwing vitamins at a child in this sort of scenario, vitamins should be supplemented when there is a specific indication or deficiency.
I think that she seems to be getting the best of the current theraputic options available and any further interventions should be under the guidance of her current doctors who seem to have the situation well in hand.
There is no way to give a " jump-start " developmentally, other than getting the very best possible control of the underlying seizure disorder and giving her lots of attention and
stimulation. She already sems to be getting the best in these areas so you should be optomistic about her outcome.