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Fas advice please

7 replies

delilabell · 15/06/2019 19:40

Hi,
We're currently undergoing diagnosis of fas for my son.
He has some signs eg ears, thin lip, flat nose, behavioural issues and unending energy (plus other issues)
But he's also tall and at the moment is on level with his academic abilities (he's 7)
Most importantly we have a long list of times bm drank during pregnancy.
So far chromosomal abnormalities tests have come back clear so we're now waiting for an appt for the geneticist.
I was wondering if any of you have got this far and been told its not fas?
Also if you write given an fas diagnosis what support (if any) where you given.

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Turbototty · 17/06/2019 21:20

My 8 yr old daughter has a diagnosis after seeing a geneticist. She had all the physical markers including a flat philtrum and is very tiny for her age. She too is very active, but unlike your ds is falling behind at school now. We have had some post adoption support such as a full assessment of need and she has weekly occupational therapy funded by Adoption. We are currently securing an EHCP through school, but that’s it really! She has some other things in the mix such as hearing loss and a condition called Perthes disease which affects her hip joints. However she is mostly just a normal happy little girl like any other.

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fasparent · 17/06/2019 21:34

Our DD like Turbotty diagnosed at birth and Genetics weighed in at
1lb 12oz at birth all facial signs , webb feet, congenital heart defect central nervous system disfunction. All Full FAS effected children are different. Your Question was regards FAS but would seem as what you enquiring of is FASD which can hide secondary issues. worth looking at www do2learnfasd.org.

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fasparent · 17/06/2019 21:36
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Turbototty · 17/06/2019 21:45

How old is your dd, fasparent? Is she in mainstream?

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fasparent · 17/06/2019 21:54

Long term support is available for children suspected of FAS FASD details see details at //www.first4adoption.org.uk or google click on adoption support then adoption support fund. Will have too access support via this.

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fasparent · 17/06/2019 22:46

Was in Primary Main stream, then Home educated , in conjunction with Specialist LA Educational Unit so still in system. Excelled at college. Now an Adult in full time employment, Drives , Owns her own house Still has Full FAS a lifetime disability., not been an easy journey , all FAS FASD children are effected in different ways No Solutions just strategies for each individual child.

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Turbototty · 18/06/2019 11:30

Fasparent - great to know your daughter is doing so well for herself. That’s really encouraging as we do worry about her future independence.

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