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Anyone know a good independent OT for hypermobility/sensory issues?

(5 Posts)
dammitjannette Sat 04-Dec-10 12:26:36

DS has a proposed statement for his needs which are largely social communication and OT related - he has AS and SPD.

We have been seeing the head of paediatric OT at our local hospital. She spent along time assessing DS - about 6 months - before providing a report which gave lots of receommendations (although mainly generic).

DS, who is 7, is very fidgety and floppy as he is hypermobile. I am hypermobile and I have had problems with back injuries as a result. I have seen a private physio on and off for the last few years and have religiously followed a programme to build up core strength which has really helped. I've always been quite fit and sporty, but working on these specific areas with the help of my physio has increased my understanding of the issues relating to hypermobility and helped alot.

So, with this knowledge, I was surprised that requests by the Community Paed for a physio referral for DS (who is incredibly hypermobile) were refused. I quizzed the OT, whose focus has always been sensory issues, and her attitude was 'there is nothing that can be done'. hmm I asked if she thought he had Hypermobility Syndrome, but she was very dismissive and told me he didn't have that or EDS. She did, however, offer to speak to physio further.

Anyway, to cut a long story short, I decided to take DS to the hypermobility clinic at GOSH privately. They instantly confirmed EDS/HMS and gave DS some exercises to begin building core strength. They felt he was very hypermobile and floppy and had about 60% of the strength of his peers.

So, now I have a report from an OT for statementing purposes whic is rather generic and overly focused on sensory issues (with no attention really paid to muscloskeletal issues) and a diagnosis of EDS with no report confirming impact etc. The OT is a very political animal and shhe has been very vague about provision to meet his needs and has even indicated that he will not need ongoing support, despite pages of recommendations.

The GOSH physio and OT write reports to confirm the issues, and they will help, but they are not in the habit of attending TRibunals.

I think I need a good OT - any ideas?

rabbitstew Sat 04-Dec-10 15:27:26

Sorry, don't know any private OTs, but my ds1 has an EDS hypermobility-type diagnosis and aspergers. We've just been re-referred to physio and he has some great shoe inserts that have helped with his weak, pronating ankles causing pain when running or walking, and she promised to send us some exercises that would help work on his weakest areas (where his hypermobility is at its worst - shoulders, neck, hips and, as a result, core stability....). I could pass on some of those exercises to you, if you want - the idea is to work on them at home and hopefully they will make a difference after 6-8 weeks. Ds1 has very few apparent sensory issues - he is no more sensitive that way than I am, so far as I can tell (albeit when I was younger, I think I was a bit more sensitive than average).

I think the problem with OT, physio and all the other specialisms is that they specialise too much, sometimes, and try to fit your child into their particular box, even if he really doesn't fit that well! They then say that if your ds doesn't respond to their methods that he can't be helped... rather than that maybe someone else might be able to help him better.

rabbitstew Sat 04-Dec-10 15:30:26

As for the tribunal - can you not forcefully put your own point across, using the reports the physio and OT will give you? I wonder whether another OT will just make it sound like the experts disagree with each other and that this will be seen as an excuse to discredit the lot of them?

dammitjannette Sat 04-Dec-10 18:17:35

Tanks rabbitstew. I think the problem with the GOSH reports (although I haven't seen the physio one yet) is that they are not going to specify provision as they are not used to intruding in to the educational sphere

We have been recommended to go see a podiatrist too. GOSH have given exercises for DS to do but the problem is that the evidence before Tribunal at present would be that of the NHS OT who clearly doesn't understand the hypermobility.

rabbitstew Sat 04-Dec-10 19:07:00

I'm not sure any OTs understand hypermobility (nor many PTs, unfortunately). I got a lot of helpful advice from a PT specialising in neuromuscular disorders, as low muscle tone and hypermobility can cause symptoms similar to some extremely rare neuromuscular disorders... in other words, hypermobility causing major issues is not very well understood by anyone not specialising in it - most people think it just means you are more bendy than other people!

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