our baby boy harley is 1 in 2 weeks, it all started when he was 5 1/2 months, all the tests and stress and finally he has been confirmed of having a rare mutation gene of alexanders disease. been told there has only been a few cases of this gene (not sure what it is waiting for it to arrive in the post).
took harley for an eye test yesterday as requested by doctors, we wondered why after he has been doing so well since we've weened him off the phenobarbitone. we saw one guy who said he thinks harley has problems concentrating on things as he did watch this guy a few times but soon lost interest.
we then went to see the specialist who put drops in his eyes had a good luck and BANG she said we should register your son as blind, what a massive shock as our son watches his spongebob ballon intently, will nearly break his own neck to watch the tv, opens his mouth when we put his dummy near his face. we cant come to terms with this diagnosis just yet as he hasn't in our opinion shown any signs. how can they tell if a baby is blind he cant tell us he cant see. then we was told to stimulate him with lights. we was confused with this.
has anybody else experienced anything like this.
thanks in advance
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got the diagnosis
- By HARLEYSPARENTS
- Posted October 29, 2009 at 4:56 am · 0 replies
- In Alexander disease (AxD) - Parents
- Shared with the public
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