Low muscle tone in children.

[JKCR2017]

DD is 3 and 4 months. She met all her baby milestones within the ‘normal range’ but probably on the later end of normal - sitting, rolling, crawling etc. As a baby she hard tummy time and she never bear weight on her legs but I was told not to worry.

She didn’t really walk until 2 (first steps at 22 months but took a while to walk). Her walking has never been great and she’s always fallen over a lot and her ankles have always rolled inwards. She can’t walk far without crying her feet hurt. She is also speech delayed and is being assessed for autism. My eldest DS 7 is on the spectrum.

For nearly 2 years I’ve been strugged off by health visitors (I have seriously loat hope in health visitors) and paediatricians who felt like she was just going to improve with practise

Yesterday, she finally saw a physiotherapists. She has low muscle tone, joint flexibility - particularly her feet which are extremely flexible which would explain the inwards roll. She is going to have some regular physio sessions and have been told soft play, swimming, the beach (particularly bare foot in the summe) are good exercises.

But anyone else got any advice?

I’m hoping the report the physiotherapsits writes will give me more of an insight.

She’s not four until July. Her gross motor skills are pretty delayed and I’m worried sick about her starting primary school next September. 😬

DD got an autism Dx just before her 4th birthday and our first clues were all physical. She also hated tummy time with a vengeance and only pulled to stand at about 19 months, started walking fairly soon after that. She always hated crawling (she was a bum shuffler) and wouldn't happily go through tunnels until she was at least 3.5 or 4.

She's always been behind on gross motor and I would say still isn't very sporty (at 4.5) but does enjoy school PE and will join in at the playground and try to climb up things and over things etc. and is getting more and more confident in physical stuff. We have a nanny who was quite pushy in trying to get her to try things a bit outside her comfort zone. She also did Gymboree which I think helped as it's a nice soft safe environment to get to understand her body a bit better (good proprioception practice!) She actually took to bike riding surprisingly well (took a long time for her to really get the hang of the balance bike - we just kept trying every 6 months or so until she enjoyed it, and then after a few months on the balance bike she said she wanted a pedal bike and got the hang of it very quickly). She loves scooting and walking, though she does get tired walking (though I have nobody to compare her with!)

The best advice we had on physio was just to encourage anything she already enjoys that's physical. I was always a bit unsure about pushing her to do things she didn't like: although in the end she came on really fast I do think there's a risk that stuff backfires. But spending more time doing the physical thing she does like I think is a win win. Our Physio basically said for hypermobile kids they need to be stronger than other kids to compensate, so anything they enjoy just encourage encourage and expose them to as much physical stuff as possible (including e.g. dancing in the kitchen, helping in the garden, helping hang up washing: anything that might use and develop muscles that you can get them engaged in!) We were told putting her stuff under the coffee table or sofa so she has to reach under for it was good practice but she was younger so that may not be appropriate for your DD. It's worth trying a range of different stuff. Our DD finds dance at school too frenetic, but does enjoy ballet (I think because it's a bit calmer and less noisy/less running around). I've heard karate etc. can also be good for kids on the spectrum and with muscle tone issues.

DD is doing really really well, loves school and is generally a very happy girl (I know you probably know this given you have a Ds already on the spectrum but I always feel it's important to say when we're talking about our kids' challenges in case others are reading who are only just starting out and feeling scared for the future!)

DD2 has low muscle tone and dyspraxia (doesn't appear to be hypermobile though). In hindsight I should have spotted it earlier - her newborn check actually notes the muscle tone on there and then no bugger ever followed it up... even when I started raising concerns about her coordination - until the OT took one look at her and commented on it.

She in-toes like mad, and her gross motor skills are pretty dire but she still runs, climbs, flings herself around attempting gymnastics in a very hair-raising manner and, although she's starting to realise she struggles a bit more than other kids (she's 6 soon) - she has swimming lessons (she struggles with these to be fair), dances enthusiastically (now we've found the right teacher who is bloody amazing and has done lots of research to adapt her teaching delivery to help support DD2 - she's also a teacher who does things like dance sessions with dementia patients voluntarily and the like... genuinely lovely lovely woman), does karate and loves climbing (if you have a clip n climb place local to you - seriously GO - and they do SEN sensory-aware sessions too - the workout it gives DD2 in terms of her core strength is brilliant and she loves the bit where you get to jump off and boing backwards back down sooo much).

She tires more than peers walking - and last year tried to get her reception class walk around the local area to take a rest break and stop and go into Tesco to buy biscuits (didn't happen but I admired her planning on this one) - but that's about it!

She's very fond of telling me that "school say I'm dead weaselly-hunt!" (resillient)

My son has hypermobility/low muscle tone and his feet/ankles are particularly bad. We were advised similar: soft play, gym tots, swimming, walking without shoes as much as possible, going up and down the stairs. We were also advised to encourage multi-level play using a book shelf or play kitchen etc, putting things low on the floor and high up so he has to keep crouching and standing on his tip toes.

I can recommend Hemispheres OCcupational therapy in Lightwater, Surrey. They are truly amazing and have really helped my son and my nephew.

Another one with a DS(7) with low muscle tone, hypermobility and ASD. Physios confirmed the first two, but just said the same as PP - encourage as much exercise as possible that they enjoy.

It's tricky, because many forms of exercise need you to be moderately competent to be enjoyable, eg normal football is out, because he would be rejected by all the other kids who've been playing for years.

However, my DS loves swimming - for years we just took them to the pool every weekend and he developed deep confidence in the water. It's not always obvious that he can swim well - I once had a life guard almost jump in to save him when he was happily swimming along, just because his style looks so uncomfortable.

Now we've found a really good class where they aren't put off by his appalling style and he's even happier.

Cycling is also good - balance bike first makes it very easy to learn on a pedal bike. I like that it gives him independence without being as tiring as walking.

He is now actually quite a game walker, but I worry about pushing him too far. One time we went for a 10k walk - he didn't complain but by the end he mentioned that his elbows were hurting and I realised that just the couple of hours of letting his hands swing was too much for those joints.