Help support and advice

[Gma61]

Hello

We have a 4 year old and have had the little joy since he was 7 months.

He has Neo nateral syndrome but his biological drunk very heavily whilst do many hard drugs prescribed drugs and street drugs and I was advised he has FASD but it was not written down even though all the files which contain 4 box files of notes tell us really bad things.

Because he has not got the FASD face the comm. Peds just say well it's not on birth file so they are relunat to help.

I push and push for the comm. Peds app and we are getting nowhere and his behaviours when around others is not good and but when on his own so loving and happy. He doesn't always lime sharing.

Is there some support group or people that live in Suffolk that want to meet up ?

I moved here and have no friends as I'm an "older" mum as well as a grandparent.

Any help welcomed.

[MB_FASD Moderator]

Hi there

The good news is there are places to go for help and support.

Is the bio Mum's alcohol consumption during pregnancy in the notes? It sounds like yes, and if so, that's a big step towards diagnosis. The facial features are a distraction, as only around 10% of children with an FASD have the facial features.

Dr Cassie Jackson (cjcn.co.uk/) is in Suffolk and can do diagnosis privately, and her husband is an NHS paediatrician, she could point you to him too.

You can get lots of advice also from the FASD UK Facebook community: facebook.com/groups/FASDUK/, including asking for people in Suffolk to get in touch. There are around 2200 people on the group, and I know some are Suffolk based.

There are strategies that can help decrease tensions in the house and at school. See resources here: nofas-uk.org/?cat=25. There are ways to help if a child is in meltdown. Some information and links about that are here: nofas-uk.org/WP/wp-content/....

All the best

[Gma61 in reply to MB_FASD]

Thank you very much. I am on the reserve waiting list for a course with this Dr. So that's good to know.

Yes it is in all s.care notes but from birth notes hardly anything.

He was on phebarbitone and other meds from birth to 5 months in care and safe house till he came to live with us.

The biologicalparents have and 1 is in prison at present for things relating to above and we do not have S.M due to not allowing our address or pictures of him and his had a name change

That's also harder finding out info on FB.

But I am going to look at this site now and have a book I read by Julia Brown which to me has been invaluable.

However, at a comm.peds app I was told not to read and look for things... I thought this was rude.

Thank you so much

[MB_FASD Moderator in reply to Gma61]

The Community Paed sounds a bit weird, telling you not to look for information. it's the only way to learn.

there are a lot of people on the Facebook group who make a profile in an anonymous name - GMA61 would work - and just use that profile to be part of the group, post no pictures etc. It's a closed group, so only members can read the posts.

You might also find videos by the Oregon Behaviour Consultation useful. They're from the US, but very very good on FASD. youtube.com/channel/UCQ6qtx...

all the best

[Gma61 in reply to MB_FASD]

Sorry site states 404 not found??

[MB_FASD Moderator in reply to Gma61]

which one, I'll report

[MB_FASD Moderator in reply to Gma61]

Here's the NOFAS UK advice page for families and carers:

nofas-uk.org/?cat=25

Just checked that it works, and if you can't click on it, just copy and paste into a browser and it'll pop up.