Hypotonia Support Group

Hi everyone, my son was 6 weeks old that I saw something strange was happing to hem. His eyes were staring and his body was stiff, that was happing 2,3 times a day sometimes more so we took him to his doctor he checked hem and we were told that everything is oke, but I knew that something was wrong so I decide to take a video to let the doctor have a closer eye on what happens to my child. My husband took the video to the doctor, when he saw the video he advised us to make appointment with a neurologist. We made appointment with a neurologist in George town university hospital, at that time my son was 3 months old. When the doctor saw his video he told us that we have to stay for 2 nights and 3 days in hospital for medical and lab examination (MRI, EEG scan & blood test) they found that he is suffering from seizure and the problem is must likely located in the right half of his brain. The neurologist started treatment with prescription Phenobarbital, in matter of few weeks the seizure attacks were taking longer to appear. my son was 6 month old when we took hem again to neurologist for check up and than the doctor told us that he is also diagnose with hypotonia and his blood test was abnormal, ammonia in his blood was too high and the doctor told us it might be that our son has a metabolic disorders but the doctor wasn’t sure about that, at that time my us visa was expired and I had to leave us. I am from Netherland but my husband is from the United states that’s why I came here and my son was born here but I couldn’t stay longer than 6 months. In July 2008 I went back to Holland with my son and I did al his medical examination over again in Holland, MRI And EEG scan were normal but ammonia in his blood was again high the doctor in Holland recommended a PT once a week so I stayed there about 4 month until I got a visa and came back to my husband, that was in November 2008 and after few days we made appointment with PT. he had once a week PT. some how the attacks became frequent, the neurologist in George town university advised us to see another neurologist in children’s hospital in DC, our first appointment were in February 2009 and his new doctor in children’s did EEG scan and blood test over again in may 2009 and the good new was that his blood test was normal so he hasn’t metabolic disorder, I was so happy I cried from happiness but they saw something in EEG scan I don’t know what, the doctor told me something about sodium channel, in June they took blood for genetic test that called sodium channel gene so in September we well hear about the result of that test .
Now my son Akmal is almost 19 months old he cant sit unassisted, he can roll in his tummy and grab his toys and play with them he makes sounds like hahaahaha. PT comes once a week at home and he loves to play with her, she is from early intervention (infant and toddler connection) but sometimes I have panic attacks regarding my sons condition. Will he stand, walk, run? please can somebody give me a hope
Posted on 08/07/09, 05:08 pm