Hypermobility?

[BigWeeHag]

Just back from Podiatrist with DS1 - she has said that he is very hypermobile, and flat footed, is turning in one foot (which is why I took him) and a whole long list.

She said he also has hypermobile ankles and knees, and she suspects all over.

And that he is probably in pain a lot of the time, and that this is probably why he is always knackered and needs a buggy.

Getting inserts and have bought boots as advised, and will also be seeking a referral to the NHS podiatrist and physio (although the podiatrist was really surprised that the physio missed this at the MDT because it is very obvious apparently.)

Anyone any advice? Good exercises etc?

Push for an appointment at GOS if thats feasible for you-they have fab hypermobility clinic with fab physio and drs. They take children for week long intensive help and do lots in the pool with them...lots of physio and advice.

Know the team professionally not from DC point of view but they are great

HTH

I'm following this with interest as DS is certainly hypermobile and has weak muscle tone also. To date, the response has been to note this but attribute his floppiness to proprioceptive underresponsiveness.

Our OT has not even addressed the hypermobility and I think that is because there is no physio available for it. I have raised it with her.

I have just checked out GOS but that is a tertiary level referral which means you'll have to be referred on by hospital etc.

DD is very hypermobile in most joints too along with having low muscle tone (trunk) so not a good mix!. Has never really been addressed by physio but OT have given us lots of exercises to help with core stability and pre-writing skills.

If he doesn't have low tone, many people with hypermobility improve by strengthening the supporting muscles which helps with the joints. Swimming is what is often advised to help. You could also ask about OT...

Also going to follow this thread , dd1 has been referred back to the pead because of low muscle tone and hypermobility (we though she may have dyspraxia). Both my dd's are flat footed, we took dd2 to a specialist a few moths ago as her feet turn inwards, i was told she had bendy hips which had caused her legs to turn followed by her feet. Dd1's feet are far worse, her ankles turn (i think i have photo's on my profile) and she has very week legs (struggles to run). Dd1 has been swimming every day at school this term which seems to have improved the muscle in her legs but her ankles look worse.

This is what is happening with my DD Marne! Her hips are bendy and her legs and ankles are turning inwards - we were told by paed when she started walking this might happen She also runs very strangely - stiffly with feet turning in.
Do you have insoles for your DD? Not sure whether to ask at next physio as DD just wearing ordinary shoes at the moment...

He sees OT already and she has confirmed hypermobility and given some exercises for fine motor skills but nothing for core strength.

He also has hypotonia.

Physio would not give her insoles or boots , we were told just to wait and see if it improves, because she can can walk without tripping over her own feet they didn't see a problem even though i told them that she does trip at home (i dont think the believed me). I bought her some 'Kickers' boots a few weeks ago and they seem to help support her feet and she is walking a lot better. The physio said that often children with Autism (dd2 has ASD) develop their own style of walking which becomes a habit which causes permanent damage.

Thanks Marne - glad the kickers boots are helping your DD. Our physio also seems reluctant to provide anything with extra support!

Core exercises might also help your DS with his fine motor skills debs40 depending on where the hypotonia is? We do lots of stuff with a gym ball and planning to start horse riding when DD turns 4 next year. Her core strength is still quite weak though so really hoping all this will eventually improve it!

Another one following the thread. Both dcs hypermobile and have periods of varying
--fairly severe- pain. Physio is good, swimming is good, even gentle ballet has helped dd as it is controlled movement and helps with core strength(though she had to give it up in the end when her hips and knees got too bad).

another one on board ds has it to , wears afos and piedro boots to help .'were waiting for genetics to see if ds has EDs

Minty - he's hypotonic everywhere as far as I know. He lolls and flops and lies around but the focus has been on proprioception but I think problems in that area are a consequence of the hypermobility which is acknowledged

DS1 has it too. Hypotonia and hypermobility and OT has mentioned proprioception issues.

Physio discussed piedro boots but decided he didn't need them but to make sure he wears supportive shoes. I must confess that he has spent much of the last few weeks in crocs...

We also need to do exercises to strengthen his core but getting little input from OT (sound familiar...) The ones we have been shown involve using a swiss ball. Also putting light weights in a rucksack and getting him to walk around with it on. Apparently to weigh him down and give him more sense of where his body is in space. OT has also suggested resistance games like row-row the boat where he is standing on the floor instead of sat on your lap.

We're doing swimming lessons and have bought a trampoline to try and strengthen his muscles, which is at least helping his jumping skills.

We're also waiting for a genetics appointment (referral has been made) because paed is concerned there is a underlying cause of his hypotonia/hypermobility.

debs DS1 also spends a lot of time lying on the floor on his side and doesn't sit up straight in any chair but slumps. Sounds similar to your DS.

What could be underlying the hypotonia and hypermobility - any ideas?

Hello, DD also has hypermobile joints and some hypotonia. She's nearly 4 and her feet sarted to turn in only this January (the bones look a bit 'windswept' on X-ray). She has AFOs for night and inserts for daytime; we were told to get Kickers but after had forked out £35, physio decided they weren't supportive enough and she now has really cute Piedros.
The cause is genetic, apparently. The good news is that DD's feet are responding well to this approach and are actually turning in a bit less.

ds hypermoblity is probably genetic but he also has cp and query Eds

Lots of possibilities for hypermobility-ehler danlos syndrome is one but can range from mild to severe so dont google or youll scare yourself. GOS does accept GP referrals for this I think-they will only see hypermobility syndrome children (check out the hypermobility website) Sue the physio there is a miracle worker.
Sometimes hypermobility is mistaken for hypotonia (can present with similar symtoms) or child may have both. The presence of pain and fatigue on exercise is very important for diagnosing genuine hypermobility syndrome as opposed to hypermobile joints which many children (esp ASD/Aspies) present with.
HTH

We just been refered to genetics at gosh where there planning looking see if ds problems are linked O r he was just unlucky

It's really hard to tell, oddgirl - DS1 does have pain and fatigue but it has been put down to his sensory problems.

First day in Kickers today. Fingers crossed they help.

My dcs have Joint Hypermobility Syndrom= Ehlers Danlos III. It's a genetic disorder which basically consists of a chemical imbalance in the connective (soft) tissue of the body.

I have it to a lesser extent, but have led a full active life, just had to do some things slightly differently because my finger and wrist joints are affected (I peel potatoes the wrong way apparently, and try to avoid writing by hand). But I did do manual labour for several years: I just learned to use my knee to push the shovel handle, to take pressure off my dodgy wrists.

Dcs are far more affected, but we don't know if they will be when they grow up. Dd (13) has periods when she can't walk (so uses a wheelchair) or even sit upright (so hast o stay in bed), but they do seem to be getting fewer and further between as she matures (she is a few years past the onset of puberty). She has had serious problems with balance and proprioception in the past (used to fall downstairs on a regular basis). Has also had continence problems, presumably because of laxity of bladder muscles. She also gets tired and is very prone to infection: paed thinks it's to do with the strain of keeping her body together. In between episodes, she is perfectly fit (does musical theatre and dance routines): she just has to be careful not to overstrain or nasty things will happen.

Ds (10) has similar hip, knee and ankle problems. Again, he is fine when he does not have a flare-up, but flare-ups are happening a lot atm. His bladder does not appear to be affected, but his wrists and fingers are: he struggles with simple things like holding a pen or using cutlery. He can't do his shoe laces up, and is being trained to use a laptop so he can rely more on that in Yr 6. He is often angry and tired, which I suspect is pain related.

I wondered about Ehlers-Danloss and may ask geneticists about it when we get an appointment. DS1 is covered in bruises due to falling over/walking into things all the time. He does bruise very easily. Its difficult to know if he is in pain as he doesn't say much yet and we think he might have a high pain threshold in any event. I think if he does have it, he is at the mild end of the spectrum. Its difficult to know whether its part and parcel of his ASD or possibly dyspraxia or whether its being caused by something else, and I think the paed is not sure either, hence the referral.

Ds almost 5 Is more or less ft wheelchair user so extreme end but not sure how much is due to hypermoblity as has cp and other odd Skelton stuff going on

Ehler-Danlos children are often quite fair in colouring (not alwaya) and their skin is also loose and elastic (think grabbing handful of skin and finding it loose with no rebound).
I know what you mean BigWeeHAg-My DS often very tired but this has been pit down to poor core strength and sensory issues as the world is so much more tiring.
GOS team often say hypermobility often mistaken for dyspraxia...as I said my DS NOT under them as he has no pain with joints and his diagnosis is definately dyspraxia/ASD and cocurrent hypermobility.Know the team on a professional basis and they are happy to see new children if you can get referred.
Hope the kickers help! and good luck louey!

Their website does say it's a tertiary level service which means they will not accept direct GP referrals but I will ask.

debs40-generally they do only accept tertiary referrals for most of their specialities-I just have a feeling the hypermobility clinic falls out of this for some reason...

oddgirl be intresting am guessing if genetic testing shows up Eds im hoping thats automatic referal to the hypermoblity team

Ds is very fair with skin so white make milk bottle looked tanned and very doughy skin body shape someone described him as very cherub looking