Hypotonia - which sports/classes to help with tone and child's confidence?

[wonderinglonely]

DD is 5 and has hypotonia. She has been assessed by the OT and we are doing a programme of activities to help with tone/hand strength etc.

She enjoys school but is conscious I feel of being knocked over in the playground and I have seen her at other activities participating on the edge of the group if there is a lot of running etc. (She has insoles which seem to have helped balance). So, I think she is already developing avoidance techiques and I see that her confidence is not great when it comes to physical activities.

She can run, jump, hop,pedal with stabilisers and climb stairs holding rail. She is not great climbing at playpark etc especially if there are a lot of other children about.

We are very happy to accept she will not be sporty, but on the other hand don't want her to feel she isn't any good at these things. We would like her to develop some confidence at a physical activity, but don't want to send her to anything where she will be overly aware of her limitations. Gymnastics, swimming? (former recommended for strengthening but would she stand out too much?). She does a ballet class at the minute. We don't want to miss the opportunity to get her started while she is young enough to benefit, but don't want to distress her either.

If anyone has been in a similar position I would really appreciate your tips.

Sounds like you are doing loads of good stuff with her! She could also try horse riding - non competitive and great for core strengthening and co-ordination.

My dd has similar issues - hypotonia (particularly in her core area) and hypermobility. She's 3 and has regular physio and OT but we are finding it a slow road!

Am interested to hear your dd has insoles - have they helped a lot with her balance?

Is the school doing anything to help/support her during PE lessons etc to improve her confidence?

Thanks for your reply smashing. Something non competitive would be ideal. I am going to look into horse riding as I hadn't even thought of that.

DD had physio as she was late to walk (core strength issues too) but has recently been to the podiatrist and OT. I do think the insoles have helped as she says she feels steadier. She turns her knee in and these seems to straighten her up a bit. The Health Visitor was able to organise these referrals for me. Not sure if 3 might be a bit young for insoles??? Always worth an ask and at least be on the radar for these things.

It can be heavy going at times, but I do see some improvements with her of late e.g. dressing self etc. She couldn't jump off both feet until she was 3!

I hope to have a meeting with the school soon to discuss the recent assessment.

Its tricky isn't it, don't want to go OTT, but don't want to miss anything that would be beneficial.

Ds1 (nearly 7 years old) has hypotonia and hypermobility. He couldn't even get himself to sitting at 15 months old, but with physio was walking by 23 months. He did do a local gym class from age 3 to 5-and-a-bit - lots of bear walking, wiggling along the floor like a snake, etc, and didn't stand out too much as the age range was quite large. The 5-7 year olds' class was a bit more of an issue, as there were some activities he clearly had difficulty with - his shoulder girdle is particularly weak, so hand stands, even with teacher support, were quite risky, given that his arms could just give way under him! Also, swinging from bars, as his shoulders are so hypermobile and weak we'd been advised not to really do swinging activities with him for fear of dislocating something... Most of the class was still fine, as it was mostly still floor activities and fun, but the more structured side was where he stood out a bit and so he chose to give up. It sounds as though your dd isn't as extreme as ds1 (who actually has a diagnosis of Ehlers Danlos syndrome, hypermobility type), so she may be OK with it.

Swimming is supposed to be the best exercise, as it exercises all muscles without risking damaging joints (all hypotonic people are more at risk of bending their joints the wrong way, which is why hypermobility often goes along with hypotonia).

As for hand activities, I've found nothing better than the piano for helping with ds's hands - he hated lego, playdough, colouring in and the other things he was supposed to be enjoying playing with when he was little, but he enjoys playing the piano.

Oh, and we perservered with playgrounds and soft play areas, pushing his bottom up ramps if necessary when he was younger, and really encouraging him to climb and explore, and he's actually pretty good on playground equipment these days and really enjoys it.

Shoe inserts are really helping ds1, too. When very little he had piedro boots, then a few years without extra support, but having the inserts has really helped in the last few months - his running style is less flat, now, and his ankles are no longer scraping the floor!!!!! He also has lots of exercises from the physio which are helping.

Ds is hypermobile and we've found that pilates is really helpful

Ballet has really helped our DD. Gymnastics wasn't recommended.

Serious gymnastics certainly isn't to be recommended as it involves far too much stretching of the tendons and ligaments around your joints into positions most people aren't and shouldn't be capable of (something that hypotonic and hypermobile people can do but that may very well cause them permanent harm in the long run). Young children's non-competitive, fun gymnastics is largely learning to balance on low beams, and building up strength and co-ordination (eg bunny hopping, bear walking, slithering like snakes, learning to roll over safely, walking on your toes, skipping, hopping etc) and is not harmful at all. Bear walking, for example, is an exercise my ds1 has to do for the physio, to build up his shoulder and hip strength. The risk of joining a gym class, of course, is the move from the fun and beneficial to the potentially more harmful for a child who has weak muscles and pliable joints.

Some OTs recommend trampolining as a good exercise. My ds1 enjoys trampolining, but I'm not entirely convinced of its merits, as he jumps with his head flipped back, practically touching his head against his own back, and his top body leaning forwards (bottom stuck out). I defy anyone to say this is good for him.

ps by trampolining, as per gymnastics, I mean fun bouncing up and down, definitely not doing summersaults.

Thanks, we were a bit wary of gymnastics in case of dislocation.

The playpark can be a trial as she does get upset when it comes to climbing etc but so far, is always keen to go back! Yes, lots of pushing or lifting her up the ladders to reach the big slides (which she is keen on).

Very interesting about piano, hope she will have the two handed coordination to manage this at some stage.

Thanks for pilates suggestion too. All advice welcome and I will be looking into all.

We are trying to follow the OT's suggestions e.g. animal walks, but DD was more interested in bouncing like a kangaroo today that walking like a bear, however we will persist!

rabbitstew - interesting about the piano. What age did you start your ds with this?

My dd is 4.6 and has hypotonia and hypermobility...she scores 9 out of 9 on beighton (sp???) score so has it to quite a large degree. She has insoles in piedro boots and has had these since the age of 15 months so yes you can have insoles from early on.

Agree with rabbitstew about the trampolining...we have been told it's ok for short periods but I do wonder how much strain it is putting on the joints etc so I really only let her do it for very short periods.

I would think swimming is one of the best things to try as it puts less stain on muscles / tendons / ligaments and hopefully will help with strengthening too.

Funnily enough I had a meeting with my dd's teacher today about a couple of things we'd seen her paediatrician about, and I asked if the teacher could incorporate the exercises the physio recommended into their weekly PE sessions, and the teacher has been surprisingly cooperative with this. There is also a programme called the BEAM programme which some schools use to help children with core stability. It may be worth asking your dd's teacher if your school uses this.

I am still feeling my way through all this and will be watching this thread with interest. Good luck.

DD is having piano lessons. She is really good and hasn't mentioned any problems.

IAmReallyFabNow - how old is she?

My Mum teaches piano 13lucky and usually starts kids at age 7. She has taught several children with Dyspraxia which has helped their co-ordination immensely apparently!

I also worry about the joint strain with trampolining. Getting one has made a big difference to dd's core muscle strength but her knees and hips go out at all angles

I know - last summer my dh was on our trampoline with my dd and he said there was just this awful, awful cracking noise which apparently was dd's knee. She stopped bouncing and lay down and complained of pain for a couple of hours but not excruciating pain...and I've been much more cautious since then. Such a shame because they just love it, don't they?

Also meant to add, my dd gets pain in her legs int he evenings quite a lot of late (especially since starting school in Sept) and the paediatrician said just to give ibuprofen. I just hate feeling so helpless for her. She copes so well though bless her.

Can also relate to rabbitstew's comment about ankles looking like they are scraping the ground!

Judo or Karate are meant to be a body strengthening sports maybe your O/T could advise if they would be suitable for your DD.

We were advised Tae Kwondo and other martial arts that involve less kicking actions than karate are a better idea.

Ds1 started learning the piano in September, when he was six and a half.

Ds1 does now enjoy his swimming lessons, although since his shoulders move about all over the place, including allowing his arms to go at all sorts of very odd angles, and his elbows bend a rather long way in both directions, he's having a bit of difficulty learning front crawl, as he isn't aware of the difference between a normal shoulder and arm motion and a weirdly abnormal one! He provides his swimming teacher with some amusement though - and we did have to opt for private lessons in the end, as he needed more individual attention than the group lessons provided in order to ensure he was placing his arms correctly. His legs are somewhat better behaved, and he's getting pretty good at breaststroke - just hasn't learnt how to breathe and swim at the same time, so keeps needing to stop!

13lucky I will ask about BEAM at school meeting. Thanks, I hadn't heard of that.

rabbitstew I agree private swimming lessons are the way to go. DD would need 1:1 too as I can see her getting into a state or just not joining in otherwise.

I am encouraged to hear the success some are having with piano as I was a bit worried she may not be able to manage an instrument (though she is only 5 at present its hard not to project into the future).

Of course, with the low muscle tone, she does tend to tire quite easily, so its trying to balance this along with activities which will help to counteract the problem.

Ballet does seem to help but I'm not sure how much longer she'll want to go once there are grades/exams etc.

The responses here have been great. Thanks so much.

Greetings from Indiana, USA.

My story, in short order, is that I have a 10 year old who was diagnosed with hypotonia last summer for the first time. Shocking, yes. We were confounded by the fact that her handwriting was that of a 7 year old and had the fine motor strength of a 6 year old. Well, after the initial shock and stress of it all, she started intensive therapy to teach her how to write all over again and stregthen her hands. Oh, and she has also broken the same left elbow 4 times through clumsy accidents, the final one resulting in a police officer and a social services person showing up at my house. I try to forget that ever happened. Along with the hypotonia, she also has dyspraxia, which is "clumsy child syndrome". The hits just keep on coming!

So, my big point is that the one saving grace that has helped my dear sweet daughter is swimming. She's a competitive swimmer, just finished up a meet over the weekend. She's not the best, but she's steady and she knows this is what is best for her body and overall development. The breast stroke in particular is the stroke her therapist wants her to concentrate on, which she HATES (she rather enjoys the butterfly). She's very strong for 50m and then the endurance and muscle strength leave quickly. But she is very aware of why this happens and knows that she needs to keep pushing forward and not stop. I guess the advantage of having this diagnosis at 10 is that I can make her aware of what is going on and she is an active participant in her ongoing therapies because she understands why this is all going on.

We were told by her orthopedic surgeon that she should not do gymnastics as it will put too much stress on her joints. Swimming, swimming swimming.

Anyway, I wish you all the best. Keep your kids with hypotonia ACTIVE on top of the therapy!!! My daughter also loves to fence and she also plays the cello to further fine tune those weak fingers. The key is to keep active above and beyond therapy!

Best to all of you.

wonderinglonely - I think you are right about the 1:1 swimming lessons. My dd started a group lesson a year ago and we have now given up on that because it was evident that she wasn't enjoying it and I think she felt worried the whole time which completely defeats the object. She couldn't climb out of the pool on her own whereas the others were out in a second and I didn't want her to become self conscious or the others to tease her. The teacher ended up lifting her out because otherwise it would have take too much of the class time up - whereas I am of the opinion that she needs to try and do these things for herself but obviously in a group class there is minimal time for 1:1 coaching. We can't afford private 1:1 lessons at the moment so are trying to take her ourselves as a family at the weekends.

wonderinglonely - is your dd in reception at school? My dd is 4.6 and in reception (a young one in her class) and she is so fiercely tired. Is this the same as your dd? Her behaviour after school is quite bad because she is literally done in (up until she started in september she still had a 2 hour nap every day after lunch and still naps for this amount of time in the holidays and weekends).

She is 7.

13 dd is just 5. She is in p.1 (NI). Tiredness is a big issue for her too.

Your dd's experiences in a group swimming lesson sound like what our daughter would be like. I cannot see she would be able to pull herself out at the side either and would just end up in a state.

I am conscious that she needs to be doing certain activities but by 2 pm she is tired! Homework has to be done first. From about 5 pm she can be grumpy and goes to bed early. She does one early evening activity a week and usually an outing in the car on the way home from school ensures she has the necessary nap beforehand. I can say she is usually very well behaved and contented, but once the tiredness sets in...

She too would have napped for a couple of hours in the afternoon until 3+ years.

The podiatrist explained that all her movements use up more energy than 'normal' so she will tire easily. I do think the insoles have helped part of this problem.

I have been enquiring about 1:1 swimming today, but trying to think of a good time when she won't be too tired! Family time in the pool is good too though, so we may end up going with that as can't be sure how she will cope with actual lessons.

Horse Riding is very good for core stability. It can help with fine and gross motor skills, communication, confidence, muscle tone etc etc - I could go on for ages about its benefits! You could look up a Riding for the Disabled Group near to you, they are friendly and helpful. Some will offer specialised hippotherapy which is run by a specially trained physiotherapist and is pure therapy, not learning to ride. Others will offer horse riding and some may offer vaulting, which is like gymnastics on horse back. This can be from a very basic level to very complex, depending on child's capability. Don't be put of by the name of the organisation and think your child is/isn't 'disabled enough' - it is there to help anyone who would benefit from the services. You can ask me anything else if you are interested.

thanks horseymum. I really wouldn't have thought of that. I would feel we were taking a space though from someone more deserving.

dd is a bit timid though so the set up there would probably be good for her. If you think no-one would be offended, I may contact them and we don't mind being told 'no' or we have to wait etc.

The idea of therapy rather than achieving a particular sporting end is appealing. She can get quite distressed in situations where she feels unsure of what she should be doing or she feels she can't do it. The OT referred to motor processing issues and it seems at times she doesn't know what to do with her arms and legs and panics a bit.

Great advice everyone. Really appreciated.

Just to let you know we hope to take up 1:1 swim lessons once we see the OT for the next assessment (prob March) and have started to make enquiries about riding lessons. DD continues with ballet too.

Thanks everyone, it has been encouraging to hear of other children progressing well.

Swimming is a definate for us and as ds gets older (he was 14 this week) social sports have become important,we have had surprising success with golf and also he has tried badminton at school and coped well because the impact is not as hard as other raquet sports.
Yoga is another possible although ds did not enjoy the class we found.We really need to improve his stamina now ,tiredness is still a major issue for us.
The big success for us has been playing the cornet,easy to learn basic tunes,not as heavy as a trumpet,good for breathing and rhythm .

I'd definitely support the swimming idea. However, it does sound like your child has quite a few activities on already, and it isn't a bad thing to enable down time so they can consolidate on what has gone before.

Remember their play is their "job" at this stage, so between school and all the activities, there needs to be some time for them too.

I love seeing parents who want to support their child, and it is obvious that you are really just wanting the best, but do still allow some time to just be