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Update and thank you

7 replies

HugAndRoll · 12/07/2013 14:22

You may not remember me but I've had advice and support from lovely people on this board while we walk the diagnosis path with both my sons. Just an update below rather than resurrecting some old threads.

DS1 is being fully investigated for autism spectrum disorder now, going to be under paediatrician, occupational therapist, educational psychologist and speech and language therapist as well as his side of physiotherapy for his flat spine!

Paed thinks DS2 has Elher Danlos syndrome, he is going to speak to a genetacist to find out if there is a specific blood test now (as there wasn't last year when the last case he worked on with this was) as well as test markers for muscle protein analysis due to low muscle tone as well as the hypermobility. He may also refer him for an ultrasound on his spine to rule in or out spina bifida due to hair at the base of his spine and his inability to bear any weight, even while held under his arms, through his legs.

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PolterGoose · 12/07/2013 14:52

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Flappingandflying · 12/07/2013 15:42

Well done you. Honk honk. Never heard of a flat spine. What does that mean if you don't mind me asking.

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HugAndRoll · 12/07/2013 23:29

Thanks both.

flapping the natural curves in his spine didn't develop due to a combination of screaming when we attempted tummy time when he was a baby resulting in him not having enough tummy time and low muscle tone in his shoulders and bottom not pulling his spine into the gentle 's' shape it should be. Physio should sort it.

Going through telling the people who need to know now. My dad doesn't believe in autism, good start Hmm

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HugAndRoll · 14/07/2013 15:59

At 14 months and 14 days, ds2 can crawl! He's very wide hipped with it and his feet are at a very unnatural angle that we will have to work on correcting but I'm blinking over the moon!!

He's had physio since he was just under 3 months old and each time these things come together all of a sudden you know the hours and hours of input and effort from our little boy are totally worth it.

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HugAndRoll · 20/08/2013 11:22

We have had ds1 last SALT assessment today including her opinion. She does think he has some form of ASD and is writing a report which will also go to his school for September. One more step along the diagnostic path we go.

If his paed and his SALT both think ASD is that a likely diagnosis or does the ed psych and OT have a lot of input to that (not that I think they would disagree just wondering really).

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sophj100 · 20/08/2013 21:51

With the Paediatrician & SALT agreed on the diagnosis, the Educational Psychologist is likely to concur and the OT will simply be able to help with coping mechanisms and exercises, which will help with certain aspects.

In short, it would seem that ASD is the diagnosis. Both my sons followed the route of SALT then Developmental Paediatrician and the OT was introduced later, following diagnosis. The Educational Psychologist, provided by the local authority, then comes into the scene to help in the school environment.

It's a tough process but your fellow Mumsnetters are here each step of the way x

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HugAndRoll · 21/08/2013 12:26

Thank you :).

More good news, hypermobile ds2 is being referred to orthotics. This week has been a good one for moving in the right direction.

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