Hi Gracia's mom and another day,
I appreciate your concerns of my son. His mother is really taking all pains of feeding him, and taking care of his day to day activities. I understand it will be heart breaking and painful for any parent to feel and see day in and out their kid's sufferings.
All his test including Lumbar puncture was done almost 3 times over one year period and there are no signs of any infections or changes in glucose or other protein levels. We are worried, why none of the investigations are showing any results till date, including MRI of brain done almost three times in span of 6 mths each.
I was looking for any suggestion about Ketogenic diet helping kids get relieved of the encephalopathy. The doctors are doubtfull, it could be due to some unknown or rare disorders, but the prognosis is worsening and getting delayed, as he is suffering for almost two years now. With his growing age, we are worried about his health. The myoclonic epilepsy is only a symptom, the underlying reason or problem is yet to be diagonised.
We have tapered off all allopath medicines and have tried for last couple of months on homeopath (Predicitive homeopathy by Dr. Praful Vijeyakar, Mumbai India) whose medicines have helped him take his food regularly after four months of difficulty in swallowing, but at times he gets continous myoclonic jerks at sleep or during sleep in night, we had to give him Clonazapem, which reduces the jerks for sometime.
I wish and pray god that no one on this earth get progressive myoclonic epilepsy at childhood (1 in 1,000,000 get them).