Advice needed

My son is adopted who is now 8.5 and I have had him straight from hospital.

He was born with neonatal abstinence syndrome. He was a very difficult baby and still is, I have fought the medical profession since day one. He is not a cuddly child, never has been, he has been dx with SPD but I kept saying there was more to it. Seeing paediatricians in our area is almost non existent at present, people retiring, leaving, whatever. I have gone as far as geneticist and all I have so far is there is nothing showing up on genes so we think it's "probable" he has FASD. That's were I am stuck.

My GP isn't prepared to send elsewhere as she thinks that the benefit of knowing if he has or has not got it won't help.

I have been on all training courses for ADHD, Autism, FAS, even parenting courses which were useless because their way of parenting doesn't work on FASD kids, all fostering training too and because mum denied taking drugs and drink I can't get any further.

Why would I be still after a dx if my son wasn't showing all signs of FASD. And why isn't there an easier option. Where do I go from here.

5 Replies

  • Hi there

    We had the same struggle and still do , we had to fight ever corner from GP, to schools.

    Please look at the following overlapping behavioural chart which may help.

    I can also recommended buying the book on parenting a child with FASD by the FASD trust. Armed with these go to your GP and tell them he ticks all these boxes and you would like to be refereed to a paediatrician for a second opinion.

    Hope that helps


  • Thanks for the reply, I have had the chart for a while and my son ticks nearly every box.

    I have also been on courses for ADHD, Autism, SPD and FAS along with other courses and I was sent on oarenting course (I have 4 older kids), school thought he had SPD which was our first recognition that was age 6 and I had fought from birth. He is almost 9 now and still being fobbed off. Keep being told you don't need a dx. Well I think u do as I won't always be here as support. (Am an older mum) and as he gets older his impulses haven't improved.

    Haven't read the book but intend to when I get a minute.

  • I think it's incredible in this day and age that the doctors decide whether you need a diagnosis or not! It's your life and your child's life, and I think you have the right to make that decision. I would definitely insist on a referral. We got our community paediatrician to refer us to Dr Mukherjee. Where do you live in the country? Dr Mukherjee is the main expert in UK, but also I hear good reports about Dr Kate Ward in the north of England. After many years, we have finally got a diagnosis for our daughter (who has just turned 12) of FASD, with ADHD and ASD. Whilst we still have no support, it not only helps understand your child's behaviours better, but you can explain more to teachers, and in the future if there are any difficulties - you can explain why. Also, the public in general needs to understand more about this growing disability.

    What may be problematic for you is obtaining evidence that the birth mother drank. Is there anyone you could contact about this, or any information that social services could give you?

  • Greenmother, social services aren't that helpful to be honest. They don't have much in the way of details but she was in a drug programme but doubt I would get any personal info from them either.

    The fight continues cos I won't be giving up till I find out. X

  • We are pretty much in the same situation as you. Our daughter who is 9 has been diagnosed with SPD. We are waiting for an appointment with the genetics team. We keep mentioning FASD when we have appointments and will continue to do so, but as yet no-one has agreed it could be.

    She is adopted and came to us straight from the hospital and we too have no proof of alcohol consumption during pregnancy. But she ticks all but two of the boxes on the chart.

    I have read the FASD book and would recommend it.

    I hope you get a referral to an expert in FASD. The clinic in Surrey has a website and i wondered if you contacted them direct they may give you information that may help particularly as you have a 'probable' diagnosis and have gone down all other avenues.

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