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FAE Diagnosis

3 replies

adoptmama · 23/02/2013 09:13

Pretty sure that DD2 has fetal alcohol effects. Endocrinologist also thinks alcohol is a root issue for her. We are not in the UK and I am not sure how well known/aware medical profession here is. Heatlh care here seems to lack being 'joined up' so we go to endo and we go to neurology but I am not sure they are talking and joining up the dots. Can anyone tell me whether there are definitive tests to rule in/rule out FAE. DD has epilepsy and growth deficit as well as hearing/speech issues. From what I have read she meets the diagnostic criteria of FAE but part of me wants to know for sure, rather than just as 'yes looks like it'. In other words I want to know if her health problems are just conincidental or are FAE as obviously if it is the latter we potentially have life long issues that I can start addressing as soon as possible.

thanks

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Moomoomie · 23/02/2013 13:53

There are no definitive tests to diagnose FASD, my daughters were seen by a genetist and were diagnosed by her.
She took the whole history into account and looked at the girls nd said they had the facial features for a diagnosis.
To be honest the diagnosis itself has not really got as very far, and I'm not sure if it will.
FASD is such a broad umbrella spectrum disorder that no two children are the same.
It took a long time for the professionals to listen to us concerning our daughters, eldest is 12. And there was a lot of seeing different professionals for different things and them not talking to each other.
Good luck.

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Lilka · 23/02/2013 18:00

My DD2 has probably FAE. I say probably because she has many of the symptoms (behavioural, cognitive, developmental etc) but no physical/facial features, and given her background and other MH issues, it's impossible to definitely identify that alcohol has caused these issues. The medical and therapuetic professionals are all pretty sure alcohol is the likely cause of many of her problems, though not all of them by any means. Having multiple things going on makes it very difficult to pinpoint and say 'it's definitely this'.

However it can take professionals a long time to sit up and take notice as Moomoomie said

It may be better for now to read up on FAE/FAS and try to support her/work on some of her issues using methods known to benefit children who have FASD

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fasparent · 24/02/2013 00:37

Hi you say you are not from the UK if you are in europe suggest you contact
EUFasd Alliance, Diana Black who may be able too sighn post you too approriate support if outside EU FASworld. All contact info you can find at www.fasaware.co.uk are all a conected community

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