enquiry for treating aspartyl glucosaminuria

Dear Dr ,
We have only one ten year old daughter who was earlier diagnosed with birth asphyxia with simple partial seizures with physical & mental delayed milestones. She was on the following medicines:
Syrup Epilex – 12 ml tds ( sodium valporate)
Tab Topomac – 100 mg bd ( Topiramate)
Tab Frisium -- 5 mg bd (Clobazam)
She responds best to Epilex and the above treatment had fairly stabilized her condition. She also responds well to physiotherapy and occupational therapeutic treatments.
In April 2007 she developed action myoclonus seizures. Her EEG and MRI reports are normal. Her metabolic tests revealed elevated levels of Aspartic acid (196.56 as against 17 – 51 umol/L) She was diagnosed with Aspartyl Glucosaminuria.
Her present medications are:
Syrup Epilex--12ml tds
Tab Frisium-- 5mg bd
Cap Zonisep-150mg od .
We learnt about your esteemed organization through internet and request you to guide us about the treatment available for the above disorder. We sincerely request you to help our child to overcome her problem so that she can lead a normal life. Her present condition is as follows:
1. Physical Aspect: she is unable to walk independently.
She has Ginigival Hypertrophy and Nystagmus.
She speaks only bisyllable words
2. Mental Aspect: Her mental development is about 50%.
She indicates her requirements
3. Her blood tests revealed higher levels of ammonia (124 as
against 11 – 35 umol/L)
She has good memory power about toys, people, space, music,..
We once again request you to help us and/ guide us where treatment information is available. With kind regards.
Sincerely, the parents
Suma and Manjunatha