Hypotonia and Hypermobility - what will happen?

[HereComeTheGirls]

My DD is 17 months and has fairly mild hypotonia and hypermobility mostly affecting her left ankle. She is now pulling to stand and starting to cruise after some intensive physio, and is waiting for some Piedro boots. She has improved enormously and has gone from not being able to stand at all to standing, crawling properly, pulling up and cruising in only 6 weeks. But her ankles are still very bendy and she is generally quite floppy. I just am concerned about what this will mean for her in future. Will she grow out of it soon or will it have implications for her school life etc? I know this is very variable but I just wondered if anyone has any experience of this and what happens when children get older. TIA

I should add that so far all her movements have been assessed as normal so the hypotonia is thought to be benign at the moment, thankfully.

and when i say "standing" I mean hanging on to a table or something!

It really is incredibly difficult to answer this one. I have two children who are both affected in various degrees.

Dd is what you might think of as fairly-bad-case-scenario (not quite, quite worst-case). She started walking at 19 months, but was always a little unsteady. When she went to playschool, the staff remarked that she seemed to have an unusual amount of falls and accidents, and we noticed the same.
She was quite late with writing, but not abnormally so.

By the time she was 7 she started developing bad ankle pains, which made her unable to weight bear for days on end. This was when she was diagnosed and given exercises/insoles. She also had a lot of bladder infections and became mildly incontinent (part of hypermobility syndrome).

When she was 9 her hip joints also became affected. An incautious move would make her hip hurt so much that she couldn't stand up or sit.

A little later she started putting her back out; something as simple as turning over in bed could bring on back pains that made her unable to sit up. She missed a lot of time off school and juggling her care with work became very difficult. We also discovered that her muscles would go into spasm after she "put a joint out", which meant she took longer to recover. Unfortunately, it took a long time to find a way of working with the school.

She would have weeks when she could move around normally- she even danced in the ballet school show!- and then weeks of being confined to a wheelchair. Totally unpredictable.

She also started catching a lot of
infections (probably weakness from chronic pain) and started being sick after eating (chronic constipation- another problem that hypermobility can give).

Now she is 11 and we have finally had some decent treatment (including 5 weeks at a pain clinic which was excellent). An OT has been to her school to evaluate the whole of her school day and make sure she is not overstraining herself. Atm she uses a wheelchair to get to the school, but manages to get around without it. She has had to give up dancing and does not do PE. She has to do physio every day and wears insoles. She uses a special pen at school and has a slanting file to write on. She has been promised extra time for her SATS. We are hoping to get transport from the council, which may mean we can phase out the wheelchair altogether.

She is a lot more confident in herself and accepts that she will always be disabled to some extent.

Sorry, if this all sounds depressing. We'll move onto ds.

He is now 7 and has just been diagnosed with hypermobility. He has insoles and a special pen. He is obviously a much milder case: he has had some pains in the arch of his foot and (yesterday) in his hip, but nothing bad enough to stop him functioning. Hopefully having been diagnosed and given help earlier, he will never be that bad. He has struggled more with learning to write and is generally quite clumsy.

I feel really guilty about writing this, as dd is such a bad case. But if I have learnt anything over the years that might be useful it would be:

keep pushing for treatment if you think she needs it

never dismiss complaints of pain as imagination- and don't let the doctors do it either

see if you can get an OT onto dd's case if she needs it

and

lots of hypermobile people never have any problems at all

I am so sorry you have had all these problems. It is horrible to see your child in pain! I am very grateful you have written such an in-depth reply! I am really glad you are getting a lot of help for your DD now. I do indeed worry that this is something that will not be taken seriously when my DD is older! It doesn't seem to be considered an important medical condition like other conditions, I feel. We are fortunate to have great care at the moment, but they are still just implying it will all be fine with special boots - lets hope so!!

The physio said today that kids can have problems if they start using their muscles wrongly at an early age, which is why DD is getting some Piedro boots now. Did your DD have any help when she was a baby? I am hopeful that the help now will avoid her having such severe problems in future. I am also hopeful because her right ankle and her wrists appeared to improve immensely over a short period of time. But it will be a waiting game I know!

It does really help to talk to someone who has experience of this. Thanks again!!

I also have some experience of disability myself as I have had ME/CFS since I was 15, although I am only mildly affected now. I have read that this can be related to hypermobility syndrome. I also tend to put my back out and injure myself with the slightest movement, although I have never considered myself to be hypermobile as my joints don't seem particularly bendy!!

Hi, HereComeTheGirls,

I agree with cory that it is incredibly difficult to answer your question, as there are so many possible outcomes - from finding that your daughter has a conditions that deteriorates over time, to finding that she just gets better over time until you would never know of her early problems, and pretty much everything in between.

My son is now 4 and is hypotonic and hypermobile. The physio and his paed. think it is most likely hypermobility syndrome, but we are on a waiting list to see a neuromuscular specialist to rule out other conditions causing hypermobility (and possibly myopathies, but as he is getting so much stronger over time, I really don't think the specialist is going to even want to go there, any more). At 15 months, he just sat up if put in that position or lay on his back. As with your daughter, physio made a dramatic difference to his abilities reasonably quickly, so that he could walk independently, in piedro boots, by the time he was 22 months. Now he is 4, he can run and jump, and he is no longer in piedros (although his ankles do pronate quite a bit and he has very flat feet, so if he starts to experience pain, or it gets any worse, he may end up with extra supports again). He does have some difficulty gripping a pencil normally - no problem with a fat felt tip, just when he's required to produce a bit more pressure on the page that his hypermobile fingers tend to cause a bit of trouble. He is well co-ordinated, however, so can form all his letters when writing and walk along a narrow beam at gym class. Physically, the only thing that is now noticeable about him (apart from the flat feet and pronating ankles, which I have, too and nobody ever teased me about it...) is that he can't run as quickly as other children his age, or jump as high, still can't hop, can only pedal a tricycle indoors (rough surfaces are a bit too much like hard work), and still finds stair climbing quite hard work (although he can climb "like a grown-up" if the steps are reasonably shallow - if steep, he has trouble producing enough force to climb up one foot after the other). What is most noticeable is that, whilst it takes time for him to build up enough strength to overcome the hypotonia and hypermobility, he does get there in the end. We've bought him a bicycle to ride on this summer, so that he can strengthen up his legs doing that, and he is also having and enjoying swimming lessons, as swimming is the best exercise for hypermobile and hypotonic children - it can strengthen the muscles around the joints without doing too much harm.

All in all, unless he starts to experience pain with his hypermobility, I no longer think the hypotonia and hypermobility are going to have any particularly significant impact on his life. He may be teased a bit at school, because he will most definitely never be a great athlete, but my husband was like that and he wasn't scarred by the teasing!!! Both my husband and I (and other members of our families) are hypermobile and we've never particularly had joint pain (albeit we never had our son's physical delays, either - in fact, I was always pretty good at gymnastics and running), so I'm really hoping that our ds just has a severe form of a fairly benign familial thing. Having said that, when he was learning to walk, he did seem to experience some pain in his knees... But never complains, now, and can really walk quite long distances for a child his age (albeit rather slowly...).

Hope this helps.

Thanks! This is all so helpful!

We are hoping to take her swimming soon, I was waiting until she could walk so that I didnt have to carry her around into the pool but might just go for it anyway!

Swimming is good . Have you got a shallow pool near you? We've got one of those family pools where the water is crawling depth one end and swimming depth the other.

If your dd is strong enough, ballet can also be a good exercise. It's very controlled movement, so less risk of injury than with contact sport. We feel this is something that really has helped dd over the years.

I have a general feeling that unathletic children don't get teased at school quite as much as they did 30 years ago- teachers tend to clamp down on bullying these days. And children themselves seem much more aware these days.