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HYPOTONIA AND HYPERMOBILE JOINTS - specialist care in London

(20 Posts)
HayleyK Tue 22-Jul-08 14:35:36

Hi,
Does anyone have any recommendations for where we should try to be referred to for care for hypotonia in London. At the moment we have been referred to Greenland in Camden, as they can apparently do the speech, occupational therapy and paediatrician bit all under one roof. Has anyone got any experience there, or should we be pushing to go to Great Ormond Street or other place? Does anyone know who the best doctors are to see (either privately or through the NHS).

So far it doesn't feel like anyone is taking an overall view and I'm not really sure that we're doing enough and am scared that we are missing this important window to really help our boy whilst he is still so young (2 years old).

Thanks so so much!
- Hayley

reiver Wed 23-Jul-08 15:44:50

Hi Hayley! Sorry I'm not in your area so haven't a clue but bumping this for you. Are you getting any input from a physio?

Can anyone help?

asteamedpoater Wed 23-Jul-08 20:32:48

HayleyK - what do you actually want? You could insist on a battery of extremely invasive tests to rule out all possible causes of your son's hypotonia (would probably need to go to a specialist children's hospital or specialist wing of a large London hospital), or you could have physiotherapy, OT and speech therapy to deal with the symptoms and wait a while before you do further tests (many conditions rule themselves out over time, and often, however many tests you do, you never find a cause). If all you really want is to treat the symptoms at the present time, and there's no indication that your son is likely to have anything potentially life threatening wrong with him, then I don't see what would be wrong with the place you've been referred to: I'm sure they will have seen other children with hypotonia and hypermobility before.

Having said that, I know nothing of the place you mention, although it sounds similar to other units throughout the country that bring all children's OT, PT, and similar services under one roof. So long as the people you see specialise in paediatric care, you are likely to be seeing people with sufficient expertise to help your son.

My son is also hypotonic and hypermobile and now he's 4, having received PT and speech therapy, regular reviews from a paediatrician and some assistance from an OT, he has been reviewed by a neuromuscular specialist and we will be seeing a geneticist. Prior to now, we haven't gone down that route, because a diagnosis was unlikely to make any difference to his treatment and we didn't want to put him through the trauma of testing for a needle in a haystack. As he has got older, most possible conditions have ruled themselves out - certainly the more serious ones. We are now pretty much left with hypermobility syndrome/Ehlers-Danlos syndrome and some exceptionally rare myopathy (which no-one thinks is likely). Or, of course, no diagnosis - and continued OT and PT as and when required to deal with the symptoms.

Having said that, there is no right and wrong answer to what you should be doing for your son. And if our son had been affected in other ways besides having the hypotonia and hypermobility (eg cognitive deficits, obvious muscle weakness in addition to the low tone, breathing problems, difficulty swallowing food, failure to thrive), we wouldn't have been so inclined to wait and see.

Good luck in whatever you decide!

By the way, have you looked on the ivillage hypotonia board (http://messageboards.ivillage.com/iv-ppchdhypoton)? There are loads of people on there with hypotonic children, many of whom have had all the tests going and masses of therapy. You would get loads of helpful advice and support from people on there.

asteamedpoater Wed 23-Jul-08 20:41:03

ps If the problem is actually that you have to wait months to be seen by anyone at the place you've been referred to, then you may have to go private if you can afford it.

itati Wed 23-Jul-08 20:43:58

My DD hasd hypotonia and we had private physio locally as the GP wouldn't help.

We had one appointment at GOSH for problems with her feet and were there for about 1 minute when the consualtant said she was fine. That was separate to the hypotonia though, I think.

It was about 4 years ago now so the timings are a bit blurry.

asteamedpoater Wed 23-Jul-08 20:44:14

pps I would have thought private OT, PT and speech therapy would be frighteningly expensive, though...

itati Wed 23-Jul-08 20:49:57

Physio really isn't that expensive ime.

itati Wed 23-Jul-08 20:49:59

Physio really isn't that expensive ime.

ACL Thu 24-Jul-08 13:22:05

Have you seen www.hypermobility.org - lots of info at the message board re Gt Ormond St Hypermobility Clinic - fab team (world experts in HMS). You can see the team via nhs or privately.

I was diagnosed with benign congenital hypotonia and so was my son - we now have been told to disregard this "red herring" and to know that we have Hypermobility Syndrome/Ehlers Danlos Hypermobile Type. The weak collagen makes us look as if we are hypotonic but we are not!

Physio, OT, orthotics are the usual package of care for children with HMS.

Cheerio

asteamedpoater Thu 24-Jul-08 18:13:30

Hypotonia and hypermobility frequently go hand in hand - sometimes hypermobility causes low tone, but low tone also causes some hypermobility. In other words, a muscular problem or brain based problem could also cause hypermobility and hypotonia. The degree of hypermobility, and whether for example some hypermobile joints later become stiff due to muscle contractures can help decide what the basic problem really is. You can't tell for certain just by looking at a very young child (unless there is a strong family history of hypermobility, joint dislocations or subluxations, joint pain, unusual scarring and bruising, unusually stretchy skin etc). You would need to see a geneticist and possibly a neuromuscular specialist to get a proper diagnosis. And if you get the diagnosis, you would get PT, OT, etc, as per the clinic to which you have been referred. If you are certain your child has hypermobility syndrome, then push for him to be seen at Great Ormond Street at their specialist clinic, as then at least you'll know he can't go anywhere better for help with his hypermobility.

HayleyK Thu 24-Jul-08 22:26:25

I think he's hypermobile but without the pain (he always seems very happy) - so I don't think he's got the syndrome - should I still push for Great Ormond Street.

Thanks so much to everyone for all your advice, particularly to asteamedpoater for the link to the hypotonia board - amazing source of information - within five minutes reading people's posts, I just found realised that the reason my son throws up after coughing a lot is because of the hypotonia and the muscle tone causes gagging (I don't quite understand it, but it makes sense as none of my boy's friends who aren't hypotonic do it). I hadn't realised it was connected before!

I'm going to go on there and see if I can get some advice on how important it is that we push for a diagnosis or whether people in our situation would recommend just treating the symptoms.

thanks so much to everyone again

asteamedpoater Fri 25-Jul-08 15:40:20

Hi, HayleyK,

I'm glad you found the hypotonia board useful - it's been a fantastic source of information, support and reassurance to me over the last four years. If you give a detailed description of your son's symptoms, you're bound to find someone who can relate to everything you've said, and it's great to hear from people whose children sound exactly like your own after a few years of only seeming to see children who are developing completely differently to your own!

HayleyK Sat 02-Aug-08 01:30:11

I agree - my nephew is a year younger than my boy and is starting to overtake him in many aspects of his development - and partly its really lovely to see him develop and grow up and partly its deperessing as anything just because it underlines the fact that there are problems with my son...

Raine3 Sun 10-Aug-08 23:45:29

Bobath Centre is supposed to be good .... we have just been referred, but not heard any more yet.

I did add a thread asking about Bobath & there is a response from someone who goes every week or so.

lou33 Sun 10-Aug-08 23:58:53

bobath is really v good

ds has been

Raine3 Mon 11-Aug-08 00:02:14

Thanks ... I'll give cons paed another week or so then email her to see if she has made the referral

HayleyK Tue 09-Sep-08 21:18:44

We just had our first session at Greenland - seems really good!

iwearflairs Thu 11-Sep-08 21:54:03

Hi Hayley - just saw this belatedly and wanted to add my DS sees the Hypermoblity team at GOSH and they are completely fantastic if you ever feel the need to try somewhere else. We a have BJHS/EDS III and no pain (so far, but my brothers have some - I don't think you necessarily have to have pain, it is just one part of the syndrome albeit an awful one).

All the best and hope things continue well.

mm22bys Thu 11-Sep-08 22:33:14

Hi Hayley,

Have just seen this too!

My DS2 is hypotonic, and he has had a whole range of tests, including some quite invasive ones, but we took the view that some conditions are treatable, so we didn't want to leave anything out. He's 22 months, and has had blood and urine tests, MRI, EEG, ECG, muscle biopsy and lumbar puncture (and probably other things I've forgotten!). The last two were under a GA, but he needed to have an unrelated operation anyway so we thought we would piggy bank the two extra tests of the GA for his main op.

So far lots of tests but no diagnosis.

He has been seen by the neuro-muscular team at GOS, and they are world-experts, if you are going anywhere, I would go there.

He has also had loads of therapy, including at Bobath, and they are fab. We were going weekly, but from Monday week are going to do an intensive block in OT and SLT.

He is still very behind, but recently has made loads of progress, the drs and therapists who haven't seen for even just a few weeks have commented that he's a different child...
All the best,

cory Fri 12-Sep-08 23:04:23

Just wanted to add that pain with HMS/EDS is not necessarily consistent. It often comes on during a growth spurt (with dd it started with the 7 yo growth spurt, for some it is puberty that sets them off). Some people have long pain free periods later in life, after they've had periods of pain.

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