Hypotonia

[debs40]

Hi

Does anyone know much about this? I know it is low muscle tone (as opposed to muscle strength) and that it can have many different causes.

It is one of the things the paediatrician pointed out at our appointment. She said it would make it hard for ds to ride a bike or even sit all day at school.

I just wondered whether anyone had any experiences of this and the benefits of physio

thanks

In our case the hypotonia is a side-effect of the specific disorder our dd has, in this case so severe and she still can't stand, couldn't sit unaided till about 3yrs. Physio will help a lot, working on exercised to strengthen specific muscle groups.
Special supportive seating will help with sitting - how old is your dd?

Ds2 has it - as part of his cp diagnosis. He's 2.4 and is currently unable to sit or lock out his shoulders or hips but feels quite solid now.
Six months ago it had a much bigger effect on him though. He literally couldn't move and was very floppy.
Our (private) physio spends most of his time doing strengthening exercises with him some of which we used to do several times a day with him at home (currently too pg to continue).
(He's Bobath and Vojte trained.)
They've made a HUGE difference. More so, I feel, than getting ds to practise side-sitting, long-sitting, straddling, kneeling etc at every opportunity.
Recently he's started saying a chair that supports him properly is the next step to teach him how it feels to lock out his hips. Fortuanately we started the ball rolling on that (NHS) last September and it's due to arrive next week.
One thing we did discover is that it can be linked to thyroid function. So a blood test is worth doing. (Relatively simple thing to sort out we thought as opposed to years of physiotherapy, though sadly ds2's second / check test was normal.)
Ds2 gets tired very easily (still sleeps 3 - 3 1/2 hours a day plus 12 hour nights) and I think that goes hand in hand with hypotonia too.

Dd had hypotonia as part of her connective tissue disorder/hypermobility. She does find that she needs to sit on a comfortable chair, not slump, and at school she needs permission to move around. She has never learnt to ride a bike, though ds, who has a milder form, has.

Both dcs find it difficult to sit still in the same position for long; they need to be allowed to fidget.

Physio has definitely helped.

My DD had it.

Walked at normal age, rode a bike at 4 and can sit fine.

We were told she wouldn't walk or run until very late...

my ds has it along with hypermoblity hes 3.8 and started walking just over a year ago with piedro boots,but still can not walk far as he tires as well as falls a lot and with the ypermoblity for him that tends to mean dislocations.

But not all children are affected the same ,for him he needs awheelchsir to help him get around ,were currently waiting on new one

Physio is fantastic for hypotonia. It made a colossal difference to our ds1, who has hypotonia and hypermobility (the latter probably being the main issue in his case).

The long term outcome with hypotonia is hugely unpredictable - everyone will have a different story, from children who seem to catch up with their peers within a few years to those who have lifelong problems. The outcome depends largely on the cause of the hypotonia (which it is quite possible no-one will ever be able to work out for you) and what other symptoms are associated with it in your child's case. Hypotonia without any other apparent symptoms generally does have a positive outcome. The more your child is encouraged and stimulated, the better, so physio, occupational therapy, speech therapy, whatever is suggested, is a good idea. My ds1 doesn't have trouble sitting still, although he does still find pedalling a bike extremely hard work. It's quite clear he will get there in the end, though, as he's achieved everything else he's set out to do eventually.

DD has hypotonia related to her overall mystery condition. She walked at 18 months and over one year later is still quite unsteady on her feet when she is tired. She has responded very well to physio and OT, but it's actually quite hard to tell whether some of her issues (eg speech delay, tripping over stuff, being unable to isolate index finger until aged 2.6) are due to the hypotonia or to a combination of factors, including hyperflexibility and cognitive delay.

can i ask what excersises you been given all our physio does is review ds every 4 months or so and does not think he needs excersises ,we go swimming ,soft play .

we use wheelchair as he tires very easy is unable to run,jump etc can not climb stairs so crawls up them

he has dx of GDD.SLI,MLD hypermoblity and hypertonia

Every child's going to need a tailor-made physio programme, but in general DD's was all about strengthening her core muscles in preparation for first crawling and then walking--now focussing on quality of movement, keeping good posture, etc...

Our physio exercises are to strengthen specific muscles in preparatioon for self-help stuff - eg pressure on feet to prepare for weight-bearing, and postural stuff.

thank you
ah we did not get to se physio till ds was turned 2 ,1/2 dues to gp unwilling to believe there was problem,yet took physio oh 5 mins to notice there was a big problem.

and thinking on we have done some work trying strenthen on core muscles as he tends to lean when tired even sitting in his wheelchair

can i ask how old your dcs are

Dd is 12.

Hypotonia was noticeable from a baby, but noone really did or said much about it- it was years later that I found out why she had feeding problems. Concerns raised by playschool but not finally diagnosed until she was nearly 8.

My ds1 is 5. He had physio from 15 months until just after 2 years, when he was walking reasonably confidently (although still unsteady on uneven ground, needing piedro boots and having difficulty getting up and down kerbs). The physio discharged him from regular physio on the basis that we could go directly back to her if we felt we needed to, rather than going via the GP or paediatrician, and she observes him every six months or so at school (as does the OT) so that she can give further advice if necessary/check on his progress. Once walking, he was basically at the stage where keeping him as active as possible was all that was really required for his skills and strength to continue improving - ie lots of swimming, trampolining, soft play areas, walking, climbing, drawing on a blackboard, using playdough, etc. I used some of the ideas I'd been given when the physio worked on ds to get him rolling, sitting up, crawling, pulling to stand and walking to keep teaching my ds how to do other more active things. We get advice sheets also from time to time from the OT on things to do to, eg, strengthen his grip and shoulder stability.

Don't feel bad about the delay in anyone realising your ds has hypotonia - it often isn't picked up until fairly late, as some children really are late at their motor skills without there being a problem with their muscle tone, so there's often a lot of fobbing off and not listening properly to what the parents are saying until no-one can really deny it any more, especially when there aren't any red flags for likely developmental problems, like a complicated pregnancy or traumatic birth.

DD is 2.8

yeah i had to go round my gp to get him seen by paed after i got so fed up noneone listerning.do your dc still wear piedro boots?
and did either of them need wheelchairs think for me is the not knowing how badly will affect him as time goes on

asteamedpoater my ds has hypermolity to we alread had 4 dislocations due to stumbles

I think the steepest learning curve for us has been the unpredictability, Phoenix. At least for us, it's not a case of 'does dd need a wheelchair', but 'will dd need a wheelchair in the next few minutes, or will she be able to walk, or can she dance the polka'. Any of those, or a range of other scenarios is possible within any few minutes. We're gradually learning to roll with the punches.

Last year, the wheelchair was by far the most common scenario. This year, she takes it to school every day, but hardly ever uses it. We have no idea what the future holds.

Having said that, she doesn't have a bad quality of life: she has been on all residential school trips, she has lots of friends at school, she is gradually learning to pace herself so as to avoid acute attacks.

Some things we have had to give up on: the walking holidays will have to wait until dd leaves home, or at least is happy to holiday on her own. We may have to buy that car, though we really weren't going to. Weekends have to be planned carefully, so she is not tired out on the Sunday, as that is bad news for Monday morning.

Thanks for all these posts. It is really interesting to hear your experience and it seems like some of you have a lot to manage with this and other issues. I can see that this varies so much in its impact

I noticed ds (who is 6) couldn't push the pedals on a bike and that he finds it really hard to try and kick his legs whilst swimming. It is one of the things I mentioned to the GP when she referred us to the paed. I thought it might have been part of the symptoms of dyspraxia.

The paediatrician said she thought it must be making life very hard for him and that he must be getting really tired after school. He does and I often have to give him piggy backs.

I feel bad that I hadn't noticed this! Now I read about the symptoms it seems obvious but he is so lightweight anyway, I think I just put any floppiness down to that.

I second the thanks ahve not come across anyone locally who suffers like this lots of people say oh hes just lazy

like he would not luke to be albe to run/jump even walk like his friends do as ifa 3.9 year old could be lying

Debs 40

think it affects differnt children differnt ways ,my ds is unluckly at the more extrene end complicated by the hypermobblity and his other dx bbut hes happy chap and gets around in his own fasion

Hi, debs40,

Has your paed. left it at describing your son as hypotonic and needing physio, or did she want to do any more tests or assessments to find out the cause?

Yes, she said she was refering him back to the paediatric department to try and find the cause. On looking on the web (is this ever a good idea) it seems there can be lots of reasons and often no specific cause can be found. There are also lots of scary reasons too!

following with intrest we was never given reason or any follow up tests other than that the hypermoblity in his case is probbably genetic

In our case, hypermobility is definitely genetic, as ds is now developing the same symptoms. And I had a lot of wrist pain as a child.

yes my eldest ds has and sodo i got to point where pop my joints back now ds pops thumbs and knessregulary but we both been lucky as we not sufferd to much pain with ityoungest dssadly does but it seems to have ypassed ds2 and dd