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Many thanks for the replies!
The medical form is coming in the post. The children with disabilities team havnt returned my call, no surprises there but I will hound them on Monday. Linda was it the children with disability Social services team that helped?
Rach

Mam to Thea aged 4, and Nate nearly 7 months hypotonia, breathing difficulties ( oxygen and BIPAP), dysmorphic features, undiagnosed genetically as yet.HeartHeartHeart
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Hi Rach,

It was a specialist service in Glasgow that deals with Accessible Housing for the Disabled and Inclusive Living perhaps you could enquire and see if there may be anything like that in your area.
Just keep pushing Social services team.
I see your boy has Dysmorphic features are they any closer to a diagnosis?

Good luck,

Linda x
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(06-04-2011, 01:14 PM)lin_c Wrote: Hi Rach,

It was a specialist service in Glasgow that deals with Accessible Housing for the Disabled and Inclusive Living perhaps you could enquire and see if there may be anything like that in your area.
Just keep pushing Social services team.
I see your boy has Dysmorphic features are they any closer to a diagnosis?

Good luck,

Linda x

Thanks I will definitely look into it! Well we saw the geneticist a few weeks ago and she had 2 more syndromes to test for, but said she didn't think he had either of them. So I didn't see the point! However when I've googled one of them it is my son to a t so no idea why she didbt think he has it. Next time we see her I will allow them to test for it -PKS Smile
It frightens me every time we go as they have been adamant about very severe syndromes in the past. I like to know more about what they are testing for before they go ahead, if that makes sense. we have spent months worrying about diagnoses in the past, the waiting is the worst. We just want to get on with life :-) it might seem odd dodging a diagnosis but we have been given 2 weeks, 6 months and 2 yrs as life expectancies for previous potential diagnoses.
Thanks
Rach x

Mam to Thea aged 4, and Nate nearly 7 months hypotonia, breathing difficulties ( oxygen and BIPAP), dysmorphic features, undiagnosed genetically as yet.HeartHeartHeart
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Hi Rach,

I do know what you mean about a diagnosis It took them 4 years to finally diagnose Jessica and by that time all I really wanted to know was would it affect her life expectancy it's so very hard not knowing. Also back in 1999 my husband became ill and when we seen the neurologist he gave 3 diagnosis and none of them were very good and we had to wait a further 2 months for him to be tested for them.
I asked about Nate because you said he had Dysmorphic Features and so does Jess.
How long to your next Genetics appointment?
Have you asked at the hospital if they can give you a letter of support for the housing?

Linda x
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hi sorry to bother everyone but what is an ot officer thanks


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