4 yrs old daughter still not able to walk and speak

Hi all,
I'm Prakash, writing from Bangalore,India
My 4 yrs old daughter is still not walking and talking. She was very normal upto her 10 months. rolling herself (turning body) happened at 6th month and her delivery was normal full term. When she was at 11th month of her age she started saying some words and she had verygood grip power at her hands. she was able to hold more than 3 objects at a time for a long.
we had MMR injuction during this 11th month. After completing 1st year we started noticing that she is loosing her speech and motor skills.
We were waited for another 2 months as some children may stand and do other things bit later. At her 1 and half years we consulted a neurologist and had MRI. After gone through the result he gave us a shock saying it is "Cerebral diplegia".
Then we met a pediatric neurologist and had one more MRI, EEG and muscle biopsy. The biopsy to check if there is any muscular disorders, but it was normal. The EEG showed some ubnormalities, so she had to take Valparin 100mg syrup 3.5 ml twice a day. This is being given in the past 3 years.

Also we had BERA test (to check hearing ability) and nerve conduction study (ENMG), both were normal.

During this period in 2007 we further went to National Institute of Mental Health And Neurological Science (NIMHANS) and consulted some specialists. They have seen her behavioral activities. My daughter lost completely the purpose of using hands, no grip power. Continuously she is putting her hands into her mouth also fingers are wiring. Based on these behaviors NIMHANS doctors concluded that it is Rett's syndrome.

I lost all my hopes but continuously going for Physiotherapy. Any members in this group have seen or heard about any history as my baby? How to handle this situation better? Please let me know your suggestions.

Thanks in advance
Prakash

[DrNoopurMD]

Hi,

Unfortunately there is no cure for Rett syndrome till now. However recent research shows that Insulin like growth factor can partially reverse the symptoms.
The research is in very early stages and human trials have not yet begun.
Some of the other therapies that have been tested include Carnitine, Cerebrolysin and Lamotrigine. Music therapy was also found to improve the symptoms in one study.

http://rarediseases.about.com/cs/rettsyndrome/a/101202.htm

http://www.rettsyndrome.org/

http://www.rsrt.org/

Hope this helps!