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My 21 month old has hypermobility syndrome.. any tips helpful

(21 Posts)
barnsleybelle Tue 09-Jun-09 14:15:19

DD is 21 months... bum shuffles but still not walking. After finally getting her seen by a paediatrician she has been diagnosed with hypermobility syndrome in her hips.

I've chatted with the doc and done some google research.

I always find the best people are others who have it etc.

Can anyone share their experiences please...

bunnyrabbit Tue 09-Jun-09 15:36:50

Hi bb,
DS1 (5.9) has some hypermobility in his wrists, not sure where else, so can't really help I'm afraid.

You'll find someone with direct experience on the Special Needs topic, lots of DCs with hypermobility, bound to be someone who can help.

BR
(DS1 was a bum shuffler and DS2 {14m} is too! I think it's the cutest method of locomotion)

ChopsTheDuck Tue 09-Jun-09 15:49:04

ds1 has HMS. I'm not sure to what degree it affected his early development, as he also has dyspraxia. Hypermobility combined with dyspraxia seems to be very common, it might be worth keeping an eye out for it.

I think the only real advice is to make sure she doesnt overstrain her hips and keep an eye on it. Have you been referred to a physio or occupational therapist for any support? They would be able to give you exercises to help.

ChopsTheDuck Tue 09-Jun-09 15:49:13

ds1 has HMS. I'm not sure to what degree it affected his early development, as he also has dyspraxia. Hypermobility combined with dyspraxia seems to be very common, it might be worth keeping an eye out for it.

I think the only real advice is to make sure she doesnt overstrain her hips and keep an eye on it. Have you been referred to a physio or occupational therapist for any support? They would be able to give you exercises to help.

barnsleybelle Tue 09-Jun-09 17:10:09

Thanks for your replies.
bunny... yes the bum shuffling is very cute i agree smile.
chops.. what is dispraxia? Yes, she has been referred to a physio, so waiting for that apt to come through.

ChopsTheDuck Tue 09-Jun-09 17:36:59

dyspraxia is a motor planning disorder here

barnsleybelle Tue 09-Jun-09 19:25:32

chops... Thanks so much for that link. Some of the symptoms ring true just now for dd, but not many.... and i suppose it's difficult to tell with her being so young and not walking yet.
I hope you don't mind me asking you, but how did your ds come to be diagnosed? IE. What things did you notice and how old was he?

ChopsTheDuck Wed 10-Jun-09 10:12:36

He was late developing with everything really, late to talk, sit, stand, walk, I think he was about 6+ mnths late for all those milestones. First word wasn't until 2. He couldn't walk without falling over constantly, couldn't sit on a normal chair without falling until he was about 5-6. Still can't walk or do too much exercise now.

Couldn't (still cant) feed himself without making a huge mess. Was still using his fingers until about 4 years. Couldn't draw a picture at 5 when he was assesssed.

He also lacked social skills, took everything literally, hated change and was spaced for hours at a time, had toileting issues and we actually suspected autism.

He was given a multi disciplinary assessment, which lead to SALT and physio referrals. The physio report lead to hypermobility dx and referred him to an occupational therapist who assessed him, which resulted in a dyspraxia dx. Jury is still out on autism, but he has improved and his current dx includes social and communication difficulties.

I thinkt he hypermobility can cause a lot of problems in itself. If she has hypermobility in her fingers/wrists/elbows it might be worth lookign at things like adaptive cutlery and nice chunky pens. Also, things like plasticine or waving ribbons can help build co-ordination and strength. Swimming is one of the best exercises as it doesn't strain the joints so much. I msut admit it is the hips that causes ds1 the most problems at the moment though.

sorry for the essay and I hoppe some of it is useful!

barnsleybelle Wed 10-Jun-09 11:33:34

chops.. Thanks so much for finding the time to reply. You have been very helpful. The paed has said it is just in her hips. She's jabbering away nicely and her speech is actually quite good. eating wise she is progressing well so i'm feeling we may not be showing signs of dyspraxia.
She's actually a very chilled and happy girl although we experienced a period of horrendous tantrums a short time ago. These (fingers crossed) seem to have settled.
I suppose my only concern has been her mobiltiy. she didn't sit unaided until she was 10 months, has never crawled and only started bum shuffling at 17 months. She's very speedy and can now pull herself up to kneeling. She will stand up if i hold her but not for long.
Time will tell i suppose.
Anyway... thanks again for your help, it's much appreciated.

ChopsTheDuck Thu 11-Jun-09 07:47:44

she sounds lovely!

It seems unusual that hms would stop her standing, but if she has gotten efficient in bum shuffling, I don't blame her for sticking to that!

Hypermobility can cause pain in joints so that could explain why you had the tantrums. Ibuprofen helps with that.

ds1 has been having pain issues, and after a week with no exercise he is a different child! My ds find that anything jolting, like jumping aggravates it. Might be worth avoiding baby bouncers or walkers. Swimming is the perfect exercise for it, and building up strength, which helps the joints stabilise a bit.

Has she been checked/xrayed for any other hip issues?

GoodWitchGlinda Thu 11-Jun-09 08:11:25

I have HMS myself - only diagnosed a few years ago at age of ~30, but exceptionally bendy for as long as I can remember. It hasn't affected me in any way other than I am a bit clumsy, get a bit of joint pain e.g. while pregnant or if I sit in cinema seats or cars for a long time. But I could do gymnastics better than all my friends at school and can twist my fingers and limbs into silly places! Although, the rheumatologist did advise me to lay off the party tricks a bit as i might damage something now i'm getting older blush

Mine is not too severe, although I do score 9/9 on the Beighton scale. I know that in some cases if it is very severe, it can make life a bit awkward because of the clumsiness. But I think this is quite rare.

My dd is 2.3y and she is quite bendy, though has not been diagnosed as HMS by anyone yet. She didn't crawl until 14 mo (bum-shuffled instead) and walked at about 16 mo. Although it took her longer to get round to it, and she was quite wobbly for a few months longer than some of her peers, she is fine now and runs around like anyone else. As she is not officially HMS, I can't offer any advice about that, but wanted to give you a perspective of an 'older' person with HMS, who hasn't found it to be a problem in life. smile

I also think the advice already given (sorry - can't see the name while I'm writing this!) about exercise is really good, because that is what I was advised to do to reduce my joint pain - it makes sense, because the stronger the muscles surrounding the joints, the more stable the joints will be.

Hope this maybe gives you a bit more peace of mind for the future. smile

barnsleybelle Thu 11-Jun-09 14:07:18

*chops & good witch*... many thanks again.
The paed has advised we go swimming. She said that dd has very low muscle tone and this is contributing to her not walking. Dd has always loathed toys or aids that involve her being upright such as walker/activity centre, so she hasn't been near one since before her 1st birthday. Looking back now, maybe pain was the reason. She has been x-rayed and no further issues were detected.
it's really quite remarkable the positions she gets herself into. My mum says that "she folds herself over like a piece of paper".

One last question (sorry). I forgot to ask the paed, is there a higher dislocation rate? When i see her pulling her straight legs to the back of her ears i cringe now, thinking they may pop out!

bunnyrabbit Thu 11-Jun-09 14:17:27

Sorry to barge back in, but as DS1 has some hypermobility am a little bit concerned for DS2

He is 14 months, bum shuffling, not walking or even trying to stand (won't even put his feet down when you hold him up). When did you start to worry about your DD and when/how did you have her referred?

BR

barnsleybelle Thu 11-Jun-09 14:41:57

Hi bunny... tbh i've been concerned with dd's mobilty since before her 1st birthday. She didn't sit until 10 months. Everyone, including gp and hv kept saying "she will go when she's ready". DD hated being on her tummy and wouls scream the house down if i tried her. She did not take any weight on her legs until after she started bum shuffling at 17 months. Even now at 21 months she will only stand with support for seconds only. She's also always been extremely bendy from her waist. People have always commented on it. About 2 weeks ago i went to see my gp and demanded to be referred. I got an apt very quickly.

bunnyrabbit Thu 11-Jun-09 14:55:24

mmm interesting. DS2 also hated beign put on his front until recently. Has been shuffling since 11 months (but DS1 shuffled from 7.5 months). He doesn't crawl and only 2 weeks ago started to roll. He won't take his weight on his legs at all. Does pull up sort of, but has one leg caught in front so he's not exactly kneeling.

He is also extemely bendy and can fold himself flat to reach things, or when he doesn't get what he wants and wants to have a paddy about it, sort of collapses onto his legs.... may be I'll give it till he's 18 months, and if he's not standing I'll have a word with the DR.

Cheers barnsleybelle

BR

barnsleybelle Thu 11-Jun-09 15:04:32

My paed told me that the best form of help is swimming.. she said to try and go up to 4 times a week. Might be worth you doing that too.
Good luck.

bunnyrabbit Thu 11-Jun-09 15:43:43

LOL I would love to but as I work full time t'aint gonna happen I'm afraid.

Another thing for me to guilt trip about grin

Anyway, last time we went he didn't so much as move a leg. Just floated around in our arms like royalty!

ChopsTheDuck Fri 12-Jun-09 16:21:54

I would try to discourage/distract her from doing it if possible.

Hypermobility does increase the chance of limbs popping out, but hopefully it wouldn't be an issue that young. Seems to be more common as they get older. Ds1 gets creases in odd places and they seem to click out but not dislocated anything altogether apart from fingers yet.

barnsleybelle Fri 12-Jun-09 20:20:32

Ok thanks chops. She's a flexible minx.

Thanks for all your advice..

interstella71 Sat 13-Jun-09 19:24:09

Hi barnsleybelle,
I would recommend you ask your GP or health visitor to refer you to a paediatric physiotherapist (which may take forever depending on your local area) so if you are able to afford a private assessment you could contact the hypermobility association who can provide you with a list of specialist paediatric physiotherapists.

In the first instance I would suggest you purchase a supportive boot - I would say boot rather than a shoe because the ankle is supported and so there is less for her to 'concentrate' on stabalising. Before you get to see someone you could encourage her to play in standing up against low furniture so that she is supported. If you sit behind her in a kneeling position you can get her to transfer between sitting and standing, you can guide her up and down by putting your hands around her hips. This will help to build up the muscles is her hips and legs.

BTW - it is pretty difficult to dislocate your hips.

Good luck

barnsleybelle Sun 14-Jun-09 17:05:02

interstella.. Thanks. I thought the advice was not to put shoe/boots on until she can walk? I do already do those exercises against the couch so am glad you said that, as i feel i've been doing something right. She has already got her first appointment come through for next week.

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