Who to see re hypermobility?

[Mckenngp1]

Could do with some advice from anyone who has experience of a child with hypermobility please. Dd is 6 and has recently seen a community paed because of recurrent complaints about leg pain, frequent falls, clumsiness. She also has issues with extreme tempers, trouble falling asleep, anxiety around separation from mum, phobic of trying new food.
The paed was quite dismissive, all he found was some hypermobility in knees and mentioned hypotonia. He referred her to podiatrist as he found very flat feet.
Well, the podiatrist did a whole body assessment ( I thought they would just look at the feet) and said she is hypermobile in wrists, elbows, shoulders, knees, ankles. She also has a notable leg length discrepancy.They have given us orthotics and will keep her under review. When I asked if I should be doing anything else about the hypermobility she replied no, she will probably grow out of it.
I have been reading up about hypermobility syndrome and it would explain a lot, but do children with this need treatment? And from who? I am thinking a trip back to gp to discuss but who should she be seeing if anyone? Thanks in advance!

I suppose what help is needed is determined by how it affects your ds and what help you can actually get.

My ds has hypermobility in his shoulders, elbows, wrists and fingers, it makes handwriting effortful, slow and letter formation is immature, where he uses the wrong muscles to write.

He doesn't have hypermobility in his legs, although he is very bendy. He does have a deep curve in the spine, low muscle tone, weak trunk muscles etc. This makes standing up effortful for him, he leans on furniture or me or slumps and gets tired and achy quickly. He sometimes complains of aches and pains in his legs.

Ds needs a daily OT therapy programme to help with his difficulties (after OT assessment) but he doesn't get it.

My son was dx with dyspraxia mostly from the ot report. He is hypermobile, hypertona

We see a physio, podiatrist and consultant rheumatologist.

We have found OT pretty useless although DS does have an OT.

We work on a muscle strengthening programme. Keeping fit and work on resistance training is very important.

Just noticed this thread and thought I might latch on if that's ok?! My ds is 4 years old and only saw a physio once at 2 yrs 2 months when he took his first steps...she made her assessment that he was hypermobile pretty much all over...it was a lot vaguer than some of the other ass above. She said that keeping him active and therefore building his strength is the best remedy for hypermobility. She did say that I could self refer when he started holding a pencil and she would get to involved to introduce writing slopes etc. he is still very wobbly, clumsy and falls over often though he is very tough. With regards holding pencils he isn't quite there yet because of his dev delay. Just out of interest he is a terrible sleeper , we have had huge problems getting him to settle and then frequent night waking. There is some evidence to suggest that kids with hypermobility struggle with sleep because of their over production of adrenaline. Basically their brain is too overstimulated to turn off, which is a bad cycle because the tired ear he is the more wobbly he becomes. Know on melatonin which has made a huge difference. Again sorry to hijack but just want to know whether I should be pursuing more help for him. Appointments with paed always taken over by his other problems, hypermobility tends to get ignored a little.

Meant OT not 'to involved'

I would say go to your ot. I have never heard that they produce more adrenaline - but I'm still learning. With my son his senses feedback to the brain in weak from his hypermobilty so he has SPd which can effect sleep. A weighted blanket might help?

That's interesting about the adrenealin..do you have any links to that?
My DS2 is 16 now.. hypermobile, hypotonic (wears afos his legs are so bad) and does not sleep despite the exhaustion that the hypermobility and hypotonia brings. Never has!

I alsoways assumed it was because he has ASD too but maybe not!

BTW other than the orthotics service, and wheelchair services, the physio and OT have never been any actual use!

Thanks for replies! Some food for thought there. She does have a strange way of writing, kind of makes a fist to hold a pencil, can't write with her fingers if that makes sense but I guessed she was just young and it would come with time. She does say her hand and arm hurt when writing. The other main problem is the tantrums when she has to walk anywhere more than 1/2 mile. Will see what help is available as it seems a bit hit and miss. If we looked for private help would an OT or physio be more appropriate I wonder?

My dd's specialists dismissed her considerable difficulty with walking as "just hypermobility" and implied she would grow out of it. But I wasn't convinced they knew what they were talking about and wanted to check with someone who was more knowledgeable about

1. whether dd really did have significant hypermobility and whether that was causing her difficulties with walking and
2. if so, whether there was anything that could be done.

I looked at the forums on the HMSA website and decided to get her assessed at one of the few specialist hypermobility clinics in the country. We went to Bath because at the time she was under five and GOSH wouldn't have seen her. She was referred directly by her GP.

It was quite a trek but I am really glad we did it. They had all sorts of useful advice. Having spent a good long time looking at how dd moved, they concluded that although she was hypermobile and that that might be contributing to her problems with walking, hypermobility was not the primary cause.

They said they could advise a local OT or PT on a suitable programme if we wanted, and were happy to see her whenever we felt able to travel to Bath.

DS2's hypermobility was picked up by OT, who referred onto Physio, who diagnosed, suggested exercises and referred to orthotics for shoes/insoles.

I diagnosed DS1's hypermobility, myself, after noting a pattern of injuries and pain and it was confirmed by a general paediatrician when I noted that his symptoms appeared to be worse as a precursor to what appears to be abdominal migraines (which is what we saw that paediatrician about). That was completely missed by OT, despite concerns about motor skills and motor planning.

Oh - and mine was picked up by me, too - when I was 40, struggling, in pain and downright pissed off after a lifetime of physical crapness. This was confirmed by a rheumotologist.

My son had terrible knee pains and was assessed and found to have hypermobility. He saw Dr Nathan Hasson. He referred him to a Physio who gave him a programme of muscle strengthening exercises to follow. I've prioritised exercise too, since hearing their advice. Anything and everything that might improve my son's muscle tone: bike, swim, climb trees (he's too scared), climbing frames, etc.

Interesting, everything being mentioned on here is similar to my Ds. Constantly complains of pain in his ankles, legs, knees, hips and back...at times he has complained about shoulder/hand/arm pain, Doesn't like writing at school because it is 'hard/boring' but if you take a look at his school books he always completes something which involves a small amount of writing e.g writing one number/word answers but when he has to write long sentences or stories he will not do it . Finds it hard to settle down to sleep, He cries at night because his legs are hurting and has needed paracetamol to settle..the next day it is a struggle to get him out of bed and I have to help him up. Complains that his legs hurt if we walk a small distance resulting in him hanging off me or leaning into me. He is clumsy which tbh I just saw as a boy thing he has always made me cringe when he runs because I am expecting the fall to closely follow, avoids anything involving climbing so trees, the climbing wall at scouts (although he will say he is scared of heights, similar to riding his bike he is scared he will fall off, does now make me wonder if these are avoidance techniques because of something more)...he is always the one at the park who is on the ground while others are climbing all over.

I mentioned the pain to the paediatrician who quickly checked his joints and mentioned hypermobility but didn't suspect it. He has since been referred to podiatry after the school nurse noted he had flat feet and his left foot was turning in slightly. And also an OT for an assessment for dyspraxia so will let you know how he goes on.

I apologize for not being very helpful with your OP

Hi Thatsweird! Recognise you from standing next to me in 'the line' (other thread)!
I'm glad your DS is having an OT assessment for dyspraxia. I did think of that when you mentioned some of his symptoms.
My son used to wake in the night with pains in his legs, too. For the moment, he's been ok. Been doing the Physio exercises that were given to him since June. I'm sure it's helped. Building muscle tone protects the over-bendy (high tech jargon) joints that are a tad hypermobile.

Hi, Mummyoftheyear - just a little point about "building muscle tone," because a lot of people do seem to confuse muscle tone and muscle strength (particularly the sorts of sports teachers who can't understand that low tone doesn't equal lazy, unfit person who will be cured simply by getting off their backside and running around more...). Low muscle tone is not the same thing as muscle weakness - the latter is the strength of the muscles and can be altered considerably through appropriate exercise (unless you have a serious neuromuscular disorder) and the former relates to the speed at which muscles respond to a stimulus, which is more often a central nervous system issue, and less susceptible to improvement. Some people are naturally more hypotonic than others and always will be. Having said that, low tone and weakness often go together, because if muscles are slow to respond to being stretched they tend to allow joints to be over-stretched without reacting to protect them, making the body less stable and therefore far harder work to move around, resulting in more accidents and injuries, putting you off exercise in the first place and making it much harder work to build up the right muscles to exercise in an efficient, harm-free and enjoyable way... Building muscle strength enables you to get past a lot of the problems caused by slow-reacting muscles, so that the low tone becomes far less noticeable, but a low toned person will always have more issues with fatigue and muscle strain, because they are fighting against a body which just reacts more slowly to changes in situation!

Good to know, rabbitstew. I just go to the appointments, listen as carefully as I can and trust that if I follow the advice it'll help. I'm sure I've confused the terms. Nevertheless, the Physio and orthotics seem to have helped and I'm far more proactive about finding opportunities for my son to exercise.