Trouble with diagnosis

First of all Hi, I am new to this forum.

I wondered if anyone has managed to gaet a diagnosis for a child where there are no facial features and no admission by the birthmum of alcohol misuse during pregnancy. I am sure that this is what is causing the difficulties for my 13 year old foster child (boy) and the more training and research i do (I work in childcare also and have completed my degree in Childhood Practice) the surer I become.

However, changes in CSW and also mine are having the effect that it is taking forever to get anywhere, and I am not hopeful of a diagnisis.

Any help or advice welcomed !!!!

9 Replies

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  • Hi,

    I think I have read your post on another forum. If so, I understand you are in Glasgow, Scotland?

    We live in Scotland and have lived in two local authority areas. We were foster carers until recently and have adopted a child with

    We have used CoraLpsychology in Glasgow. They are clinical and neuropsychologists and have been excellent. I am unsure if they will diagnose but have worked with us to look at specific strengths and areas of difficulty and how this impacts on learning and behaviour. They have experience in working with children exhibiting a range of challenging behaviours specific to their neurological cause including fas.

    The CAMHS teams are extremely variable and that's assuming you can get a referral in the first place!

    If your health authority either can't provide an assessment and diagnosis or refuse, my understanding is that you can ask to be referred elsewhere with your local health authority paying for it. Dr Raja Mukherjee specialist Fasd clinic in Surrey takes referrals from all over if you are unable to get referred in your own area. I have had personal communication with him and he was extremely helpful as I know he has been with others in similar situation. Your GP is required to make the referral either at a cost to your own health authority or as a private referral at a cost of £1600 I think, to Surrey Health authority.

    There is another support group Fasd Scotland and others there might be able to point you in the right direction but I do know it has been a struggle for most to get a diagnosis here in Scotland. My concern is also diagnosis being made by those not knowledgeable in Fasd and an incorrect diagnosis is just as damaging. I hope you have the support of you foster child's social worker.

  • Thanks for your reply Maclean, yes I post on The Fostercare Network site, I keep hoping I will find someone who has been successful in the same circumstances. I have been in contact with Fasd Scotland and am keeping in touch and am awaiting a phone consultation with Dr Mukherjee (although he has told FASD Scotland that they need parental admission to diagnose) I am as sure as I can be that he has FASD and have read a lot and regularly attend conferences etc (I work in childcare so can access courses)

    I am now hoping for someone even to say "neurological disorder consistant with fasd" or similar so that I can access the proper help for him.He has seen the LAAC team and is awaiting a CAHMS referral but "CoraLpsychology" is new to me so I will have to look into that if no joy soon. The Child Social Worker is new, not qualified and temporary and a bit of a jobs worth so I'm not too hopeful there but I will keep trying. Thanks again for your reply

    Bernie

  • Hi,

    Sorry, I checked the Surrey clinic and it has quite strict criteria for referral. One of the reasons for admission of alcohol consumption in pregnancy is due to ethical issues. Also, i understand consent is required from the legal guardian to test. Please do contact coralpsychology They are very proactive in seeking services for children through NHS if available and may be able to point you in the right direction. Have you tried Nofas uk, I think they may also have a directory of people qualified to diagnose, our paediatrician was not one of them! Keep searching, banging on all doors and don't give up.

  • Thanks Maclean I will definately keep trying, if only for a "consistant with" diagnosis

  • Hi, I know this will be no help to you, but I'm going to be honest. My adopted son has all the facial features, birth mum admits to drinking heavily and taking methodone throughout the pregnancy, doctor openly says "I'm not an expert but he has got Feotal Alcohol syndrome"...yet still we can't get a diagnosis from the genetics dept. Makes you want to scream doesn't it! Nobody will help him even though he does need it because there's no diagnosis.

  • Sorry to hear that becandchar you would think with the information you have you would get a diagnosis no problem, keep trying and I will do, the children need it to access suitable support.

  • Hi BernieBubble,

    Just found information on TACTs foetal alcohol services for children in the care system. They might be of some help to you. Their contact details are on the web.

  • Hi Maclean, I have looked on tact website but not sure what it is you refer to can you give me the name ...... Or if you are really clever. Unlike me lol coils you send me a link s

  • Thanks Maclean I will look this up.... Had a review meeting today and a little down hearted, no one but me seem to be worried about the behaviours he is a wee doll in school and I am wondering why I bother!

    I will be fine again tomorrow and will get on with it

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