Glad its not just me!

I've lived with my foster child for over 4 years and was relieved when I heard about FAS - I knew that was it! But yesterday I was feeling I'd let him down after seeing a paediatrician, who said 'it's not FAS because he's only got 1 of the facial features'. He said it might be ADHD and we could start tests. I tried to state my case - his mum has even admitted drinking during pregnancy, but no. I came home disappointed, didn't know what to do and looked again for more information. I found this site and am heartened to read others in similar situations. This has reassured me to keep trying for a diagnosis and to try and help make more people aware of the condition.

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  • Hi there, I totally understand your frustration and respect your determination. The problem s actually a very small percentage of hese children hav the full or any facial features. One of the children I foster is Afro Caribbean which made it even more complicated. I spent 3 years of sitting through meetings being told her behaviour was a normal forgetful teenager and left feeling maybe I was being dramatic. But I was stubborn, for her I could not give in. I found a great paediatrician, a fantastic pyschologist who agreed with me. I now have the diagnosis of FASD, I couldn't get a diagnosis of full FAS because of her features. Her brother is now beginning the assessment and it seems to be going smoothly. The difference it has made particularly for her is huge, her confidence has grown as she is not he girl who doesn't listen, never remembers homework, is naughty etc. Hang in there, your the expert and YOU know best.

    Take Care

    X

  • Thank you. I've stopped doubting myself and am back on the case!

  • paediatricans cant diagnose fas only genetist or pychartist. i got my daughters diagnosis via genetist and she was great explaining that being on a spectrum means u dont have to have all features. facial features only occur if birth mum drank within first 3months of pregnancy. hope this helps.

  • A consultant psychologist diagnosed the child I look after, I was referred to her by the paediatrician. Just wanted to clarify m earlier post.

  • Sorry to contradict, Paediatricians can diagnose. Three members of The FASD Trust Medical & Healthcare Professionals Forum Steering Committee, including the Chair, Dr Takon, are Consultants in paeds. It is about them being trained, clued up and expert. In fact, after Dr Mukherjee (who is a Psychiatrist) and the leading clinical expert in the UK on FASD, the next two most expert are both Paediatricians. The issue is the follow up management and the full assessment of a child or young person's level of understanding and functioning for which we still need Dr Mukherjee and the psychiatry / phsycology input. The FASD Trust via the Medical Forum is working to educate more medics and to improve not the diagnosis, but then the follow up care and support offered. Watch this space for more news on this front over the coming months and years - we are in this for the long haul and not some "flash in the pan" effort or organisation............. Hope this helps.

  • It was Dr. Mukerjee who told me this himself.

  • Hi, my 2 have no obvious facial features - their diagnosis was based on their difficulties & the fact that their birth mother drank during all her pregnancies. Don't give up trying - a diagnosis of ADHD just doesn't cover it!

  • No, I thats what I thought!! Thanks

  • Hi there,

    Try my frustration... no facial features... and mum has not admitted drinking during pregnancy and although she has drank since age 12 and is very ill through alcohol now... forget a diagnosis IMPOSSIBLE!!!!!...... rant over lol

  • Rant away...I understand your frustration!

  • I would like to add an update to give anyone struggling like me a little hope, I now have a consultant who although can not fully diagnose FASD as mum will still not admit to drinking during pregnancy is willing to state that there is .... Neurological concerns consistent with alcohol damage.. And considering the mothers history is reluctant to believe that she abstained during her pregnancy... A brave statement and has really helped me to believe in my own strong convictions .

  • I found that going in knowing more than the doctor helps. Find out as much information about FAS and how this relates to your child and how any other diagnosis doesn't. Having literature from a fas organisation helps. Good luck and please don't give up it took me 2 and a half years to get my adoptive daughter diagnosed. It was actually diagnosed by a genetics specialist from Great Ormond street.

  • It is interesting talking to some social workers about how they are now placing more kids who are already diagnosed. Maybe things are slowly changing?

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