Dd1 (10) fluctuating muscle tone and hyper mobility, in pain :(

[Marne]

Dd1 has a diagnosis of Aspergers, hyper mobility and fluctuating muscle tone, she ALS has dyspraxia ( not diagnosed but I strongly believe she has it ).

She was referred back to pead a few years ago after having trouble running and having pains in her legs, pead could not find any reflexes in her legs but was not sure if it was because she was not relaxing and said she has fluctuating muscle tone. I asked about the possibility of mild cp but he refused to look into it as my birth notes state I had a normal healthy labour and birth ( even know this was not completely true), she was then discharged.

For the past few days she has been limping and complaining of pains in her legs, today she had to run a mile cross country for sports relief but really struggled and walked it.

It could just be growing pains, it could just be her hyper mobility but should I be taking her to the gp for a 2nd opinion?

Could there be something else going on? Her sister also has hyper mobility and low muscle tone but seems to be able to run ( be it very loosely ) and is much more able despite her hyper mobility being more sever than her sisters.

She is 10, she has insoles/orthotics but they don't seem to be helping, her feet turn as do her ankles, she is quite small for her age but has been growing a lot lately (has shot up a bit) so could be growing pains as well as the hypermobility, she has had a lot of physio and input from OT and still does a bit of physio at school. When she walks its as if she has weights tied to her feet (hope that makes sense), she hardly bends her legs when running but when shes sat on the floor they bend in all directions. She's not really complaining much about the pain, just says they ache but is walking with a limp.

Yes I would go to the GP to exclude anything else going on.

But joint pain in shoulders hips and knees seems to go with hypermobility.

IME people with low tone and hyperflexibility tend to stabilise (hold on) at those points when they are moving instead of relying on proximal stability at the core.

So, typically, they will hunch shoulders and fix their head at an angle when writing or concentrating on table-top work.
Hamstrings are sometimes tight because they stabilise themselves when moving or maintaining posture, instead of relying on competent core strength.
And for a child with hyperflexibility, being able to do sit ups may not be sufficient- they may need to have additional strength at the core to make up for the weak muscle strength and endurance.

Another thing to consider is whether, in common with a lot of other children with this diagnosis, does she have hypersensitivity to pain/tactile input? If so, a growth spurt could be quite difficult for her to process.

Hope that makes sense.

Thank you Red, that makes complete sense, she is hyper sensitive to pain (when she gets a blister on her foot she acts as though her leg has been cut off) , I will see how she is next week, if its still painful I will get it checked out.

Marne, you say she has had input from Physio and OT.

Do you have a sensory diet for her? And a core strength programme?

Those would be the first things I would check on; as would the quality of her breathing (i.e. checking that she is not fixing with her diaphragm to stabilise and is able to breathe deeply and with control...particularly important if she is doing sport).

A nice massage from mum can often help them to handle the discomfort; make sure it's firm not light and ticklish IYKWIM

She has had a core strength programme from OT which has been continued at school but they think she has shown enough improvement (which she has in her core muscles, tummy muscles but not her legs). She hates doing sport because she's not very good at it, she's always miles behind with running and hates team sports but enjoys gymnastics (though struggle with doing what is asked of her). She cant ride a bike and cant swim but we are working on the swimming.

Polter, ds1s ot did stuff like crab walking, balancing on yoga balls and crawling for core stability. I'll root around for his ot program later and see what else she suggested.

Getting orthotic insoles made such a huge difference to ds1s pain levels, he was in so much pain before getting them and now barely ever has issues. When he was in pain I found deep massaging his legs helped in the short term.

Does she have to do the running?

I think she should be excused if it's too much for her ankles.

Gym balls are great, you can do many things with them , dd2 does lots of games lying down, propped up with a cushion and being made to reach for things (to use her tummy muscles), also crawling around on a wheely board .

Dd1 is due to be measured for new insoles next month so maybe that will help a little.

He only ever did it at ot tbh as I have yet to add purchasing a yoga ball to the massive list of 'things a carrot has told me to buy but I have no money for'

He seemed to enjoy it though, she basically got him to plank on the ball and gradually added movements such as picking stuff off the floor or moving his legs up and down.

Trampolining and swimming have really helped DD.

I'm starting to think the trampoline may be what has caused the pain as we set it back up in the garden last weekend, her legs have been hurting since, have heard mixed things about trampolining and hypermobility (can be good short term but can cause more problems long term), not sure how true this is?

Swimming is great, I am hoping I can encourage her to go more now I'm starting to go.

Ah..maybe build up gradually then with it

Dd doesn't bounce for long due to short attention span so we are probably limiting it naturally.

My 6 yr old DD has mild CP which consists of fluctuating muscle tone and hypermobility. She gets pain around growth spurts and she becomes pretty unsteady on her feet for a few weeks. Around the time of adolescence we've been told to watch out for more potential issues too.

We've spent a lot of time working on core strength to counteract some of the issues and develop better stability. Lots of gym ball stuff, planks, riding and swimming is good. We also do stretching for her hamstrings most days although they're not stiff, helps prevent them getting tight during growth spurts as our kids often compensate for low core tone with their leg muscles. Trampolining is good in short doses but agree too much isn't necessarily great for weak joints!

Hope the insoles will help with your DD Marne

Polter
Core is pretty fundamental to a lot of skills...not just motor function, but it feeds into physiological arousal (fight/freeze/flight), sensory processing, visual integration etc etc

I would start with 'tummy time'. IME children who are on the ASD spectrum avoided this stage in infancy or avoid being on their tummies when older.
Would your DS spend time lying on his tummy e.g reading a book, playing on the ipad?

Once you have tolerance for that you can do games like superman/popcorn/the egg
Commando crawling is the next stage up so I like to build obstacle courses that demand a lot of crawling under string lasers.

Gym/yoga balls are great once you have a core with some activation- but as polter mentioned that DS avoids playgrounds etc then you might have to start a step before that (hope I'm explaining this clearly).

If core is really weak, then somethings like crab walking, wheelbarrows, trampolines...while the child may experience them as great fun, there is a risk that they are using more distal stability to achieve the movement, when we want to target proximal stability first and build from there.

If he likes swinging, lying on your tummy on the swing might be where you 'get' him IYKWIM

Egg is first exercise here - also known as the snake charmer as you increase the difficulty by coming up from lying on the floor.

Description of superman here. This is an excellent blog for lots of activities...she puts a lot of work into her descriptions. She does a good description of the egg too.

Popcorn here. From how you describe your DS, I wouldnt add in the bridge, bicycle or tree yet.

Having said all that, if he didnt spend time on his tummy, just being there, I would start there first. Would he read on his tummy/ play on ipad? Even for 3 minutes and build from there.

OP Marne, I kinda passed over your response earlier.
I wouldnt rely on the school's assessment of whether her tummy muscles are strong enough TBH.
They may be comparing her with her peers, who are not hyperflexible.
As I said above, she may need additional strength at her core to compensate for the lack of muscle tone.