Advice needed

[Fiona46]

Hi, i have an 8 yr old daughter who has suspected fasd but has never been diagnosed as when i adopted her she was too young but the older she becomes the more apparent it is becoming, her school are saying get her diagnosed and want me to go through the camhs route, and my social worker is saying no it should be a peadeatrition, the fasd trust are in agreement with my social worker, i just want whats best for my little girl and im sure im not the first person to be in this situation so any help or input will be greatly received, thanks.

[biffyfan]

Hi. Got to your GP discuss your, the schools and your social workers concerns and ask to be referred to your community paediatrician and a clinical geneticist. The paediatrician may then refer to a psychologist or CAHMS. The clinical geneticist should look at facial features, head size and do a CGH array test. Please remember not all children with FASD will have facial features and remind the medical professionals of this. Hopefully you have some proof of the pre natal alcohol exposure?? in my experience its a long slog and luck of the draw which professionals you see. But be persistent and all the very best.

[Fiona46 in reply to biffyfan]

Thank you

[Davel831]

Hi Fiona,

From what we learned with our son, your social worker is correct you need to get the Peaditrican to diagnosis this. CAMHS, in our opinion when we was referred , said to us that our son didn't fit the criteria, as he was self harming or suicidal. And therefore didn't see him.

I would suggest looking or buying the following book, we found it so helpful that we purchased a copy for the SENCO teacher to educate her. In fact one thing you will find, due to the lack of information to FASD in this country , you will be continually educating people on why your child does this or that.

The book is amazon.co.uk/gp/product/150...

It is how we parent a child with a FASD. By the FASD trust.

When you go to the Peaditrican , take as much background information as you can from your adoption. Any early medical reports, all your adoption information, that might highlight if birth mum did drink during pregnancy. This will help them.

Also in need ring the FASD trust here fasdtrust.co.uk. Get support. There is support on here , and we will help each other. More, as we understand our childeren more than anybody else and we do not judge anybody! But education is the most powerful means and that is how we can help.

I hope that helps, but remember this journey is hard , you have done a wonderful amazing thing , like us you adopted a child or childeren , you need support just like us, and when thinks get tough , just remember somebody else was there once and they got through it and so can you like us!

Kind regards D and P.

[Fiona46 in reply to Davel831]

Thank you

[biffyfan in reply to Fiona46]

I can highly recommend that book too and find your nearest FASD Trust support group, definitely. You will learn more and more about the best strategies for your child and hopefully school will too. The FASD Trust run some great courses too and will go into schools to train staff too

[Fiona46 in reply to biffyfan]

Thank you ive just sent for a book from amazon 'parenting a child with an invisible illness' so hopefully that will go along way to help

[Fiona46 in reply to Davel831]

Hi Dave im from north lincolnshire and its much appreciated thank you so much, my friends and family are amazing but its not the same as talking to someone who is actually experiencing the same issues

[Davel831 in reply to Fiona46]

Fiona

No problem , like the old saying we have been thier got the t-shirt! We have learned so much from the past six years, also we made mistakes, and you will, but we are human and we ALL make mistakes and look at how we can move on and learn.

When you see your GP, educate them about the possibility of FASD, get as much information from the adoption, that's what we did. Take the form F , take all the medical records , share the information it will help you. They have a duty of care to help you and more importantly your daughter, plus they will be confidential.

Our son displays no facial features at all, but has ADHD, Senosory Processing Disorder, and has problems with bed wetting and is seeing the incontenence team. If you look at the book he also ticks these , and many more. Professionals get confused and don't really look for FASD, please look at the following which may help as well, we took this along to our Peaditrican and they agreed.

Look at come-over.to/FAS/PDF/Overla...

I hope that helps, anything just ask

Regards Dave and Paula

[Sarah67]

Hi

We are in a similar situation. My 11 year old daughter hasn't been formally diagnosed although it is acknowledged that this is the cause of her ADHD-like symptoms. You do need to go through the paediatrician but ours has told that there is no point in getting her diagnosed, that there is no funding for research and no treatment! In the meantime she continues to struggle with relationships at school although she is popular as she is so 'up' and daft that it makes them laugh. It may now be possible under the new adoption funding to get your daughter assessed perhaps? Also look at Dr Mukherjee's NHS page - just google his name and you will find him. He's the UK's leading expert and was on the recent ITV documentary about FASD.

[Boots5623 in reply to Sarah67]

Hi Sarah. Absolutely your girl should get a proper FASD diagnosis! The reason there isn't much money for research is that there is not enough correct diagnoses being made! (So the NHS doesn't put money into it because its not being highlighted) Your paediatrician should pursue this. Have you pointed him/her in Dr Mukherjees direction? He could give advice or perhaps you might get referred there. I asked for a referral direct to his clinic (from my local paediatrician ). we had to apply for local funding to go there. Dr Mukherjees clinic is in Surrey. We got it. But the waiting list is long!!

One step at a time

Boots

[Fiona46]

Thanks Sarah

[Joygirl]

This is the link to the National clinic, fasdclinic.com/

And saying there is no research is rubbish.

You might also find this interesting as to how things are changing; appg-fasd.org.uk/events/458...