granny3boys
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After 4 weeks of seeing 5 different doctors and 7 visits to the Dr, my grandson was finally referred to a Health Visitor to help with his 'constipation'. All of the Dr's ignored his mum and dad's pleas for help. He had suddenly stopped smiling and did not appear to 'see' anyone. He went suddenly from a smiling happy baby to one who slept and looked 'lost'. Luckily for my grandson the health visitor had more sense and demanded that he go to the local hospital and she told the dr that she knew something was seriously wrong. The hospital (isles hospital, so only general dr and not a specialist) again diagnosed constipation (yes that was true) but ignored the loss of eye contact and no smiling, no longer reaching for toys, no longer sitting up. Then 2 days later his family Dr phoned to say he was referred to Aberdeen sick children's hospital two days later. Within 24 hrs of being in the hospital West's Syndrome was confirmed. He has no other conditions along with West's, he had a MRI scan and tuberous Sclerosis was not found, thank goodness.
He is taking very high dose steroids for 2 wks and then weaned off them over 2 wks, hopefully. Also taking vigabatrin. He looked a bit more like his old self after the first dose of medicine, his eye contact was better. He's still retained the memory of sucking his thumb, in fact he never lost it.
This is a bad time for us all, sleep seems to be a thing of the past, crying the norm. Well not all of us, as mum and dad appear to be remarkably strong, once they got over the shock of the diagnosis. There is no family history of West's, so the Dr's believe that it is just 'bad luck'.
I just need to 'speak' to someone who is/has going/gone through this terrible time. Life at the moment is pretty bleak. He might be allowed home with his parent's tomorrow, but will have to return to Aberdeen in a week or so time for another EEG .
He is taking very high dose steroids for 2 wks and then weaned off them over 2 wks, hopefully. Also taking vigabatrin. He looked a bit more like his old self after the first dose of medicine, his eye contact was better. He's still retained the memory of sucking his thumb, in fact he never lost it.
This is a bad time for us all, sleep seems to be a thing of the past, crying the norm. Well not all of us, as mum and dad appear to be remarkably strong, once they got over the shock of the diagnosis. There is no family history of West's, so the Dr's believe that it is just 'bad luck'.
I just need to 'speak' to someone who is/has going/gone through this terrible time. Life at the moment is pretty bleak. He might be allowed home with his parent's tomorrow, but will have to return to Aberdeen in a week or so time for another EEG .
