Low muscle tone/ sensory advice??

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Hello Everyone,

my nearly 5 year old son is in reception class he is a lovely boy but has no concentration, a speech delay, he is barely learning anything, he's anxious and is now beginning to behave badly and have social problems.
I am waiting for a community paediatrician appointment but who knows how long that will be.
I recently took him to a private OT who noticed low muscle tone and balance and some sensory issues and issues with crossing the midline (I am waiting for the full report).

I'm keen to get started helping him but don't know where to start...

Does anyone have any experience of this or advice for me?
What has helped?
Who should we see?
What should the school be doing?

I would really appreciate some help because I'm very worried.

Thanks. Xx

Is he hypermobile?

Low muscle tone is really common in kids with other issues like speech delay.
OT can help on sensory issues you can do your own too. Read "the out of synch child "
Physio can help
Ask for a full motor assessment eg " abc movement battery " to see strengths and weaknesses this can then inform school.
Activities can be incorporated into schook day. He may need easy grip scissors or grips for pencils. A sloping board for writing etc. Get him ipad with educational apps eg letter tracing. Show and teach him qwerty keyboard. Find the letter c for cat etc...some kids will be able to type but not write with pen.

Ask school to refer to the educational psychologist for assessment to start ball rolling for ehcp plan for extra support.

Get a meeting with school senco a s a p. If school are dismissive look into other local schools which may be more on the ball and have more experience or a unit within the school with extra resources.

Thank you for your advice...

I don't think he's hypermobile.

Who would perform a full motor assessment? An ot?

It varies it might be the ot or the community physio. Ask who can assess .
Look up the "Beighton scale" image search to see how hypermobile he is it usually goes along with low tone

How can I get to a community physio? Can the school refer? Or I find a private one?

I really don't want to hang around for the community paediatrician appt because the waiting list is very long apparently!

Ds was assessed by a paediatric rheumatologist for hypermobility - all the major muscle groups were tested and then referred to a physio to help him build muscle tone, physio had experience with hyper mobile children. Dr said children with hyper mobility are much more likely to suffer from anxiety because the anxiety gene and the hyper mobility gene are so closely connected. Because they are hypermobile, we have been strongly advised to encourage them to take part on a much exercise as possible long term to prevent pain cause by unstable joints.

You may be able to self refer...find the number online and call.
Look for paediatric community physio .

There is no single gene for hypermobility...it's linked with lots of disorders. Though there are some specific disorders you can test for like some forms of EDS. Other times it s part of a syndrome eg chromosome micro deletions. But hypermobility is also relative ly common in general population. Sometimes it causes no issues. Other times it is clearly part of a bigger picture. Rheumatologists have studied people with so called hypermobility syndrome and found overlap with other issues like gastro issues/ anxiety/ etc. Look at the hypermobility. Org .uk website.
I have hypermobility and joint issues. .Familial. some of my siblings do too. all 3 of my dc do too . but in ds1is linked to a microdeletion syndrome he walked late and has complex lds. Dd1 has a structural brain anomaly and walked late due to low tone and hypermobility (but is super bright a* ). Dd2 uses her hypermobility to advantage for dance! So you need to look out for the other stuff...

Get advice on exercise as some may be harmful long term.

Thanks for your suggestions.

I've done the tests from the beighton scale and he doesn't seem to be hypermobile. The OT didn't mention it either.

Although interestingly he did have allergies when he was younger and was on a v restricted diet. Which is now totally resolved.

Does diet affect low muscle tone? I'm assuming lots of protein would be a good thing... he usually eats a healthy balanced diet most of the time.

I think it looks as though a "healthcare professional" needs to refer to physio. I will try the gp

Have any of you used any particular therapies/ techniques that you can recommend? (I'm feeling a bit overwhelmed by all the things I'm finding whilst googling as I'm not sure what is relevant and what actually works)

Thanks again for your help it has been really helpful

Muscle tone is controlled by the brain...neurology.. weak muscles can look like low tone. Neuromuscular diseases like muscular dystrophy are weak muscles..

. if your child can tense eg when angry then he probably has a low tone governed by neurology.
Very loose joints may need stronger muscles to control them.so exercise can help.

So not a simple answer...