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hypotonia and hypermobility

13 replies

hels9 · 06/07/2007 21:26

Does anyone else's child have hypotonia and hypermobility? Do you have a diagnosis, or just that description of their symptoms? How much did it delay your child's gross motor skills and what problems does it cause with their fine motor skills? I'd love to talk to someone with a child with the same issues.

My son appears to have very good co-ordination, is cognitively extremely bright and his fine motor skills are excellent if doing anything that doesn't require much strength (eg puzzles, bead threading). He was late talking (started talking in sentences at 2 years 9 months), due to low tone in his mouth, but is now, aged 3, extremely clear and hard to shut up - only remaining problem is his inability to maintain an 0 shape for his mouth when he tries to blow out candles! As a baby, he sat up at 7 months, but needed cushions behind him until 11 months as he tired quickly and would just fling himself backwards. At 15 months, he could just sit up if put in that position or lie on his back. After 2 months of physio, he could roll over, get himself to sitting, could bottom shuffle and had just started to crawl. He walked at 21 months. Aged 3, he can run and jump (looks a bit odd, still) and ride a tricycle indoors on a flat surface. He loves being active and does not tire easily, although he has difficulty still going upstairs and downstairs, locks his knees to walk uphill, has very flat feet and pronating ankles, his elbows look quite unpleasant when he leans on his arms as they go right out the wrong way and his fingers are extremely noticeably hypermobile, even when just pointing with them. This causes him trouble with his pencil grip and applying enough pressure to make a noticeable mark with a pencil. He also sometimes droops his shoulders down a long way and he can pull his arms right back and up behind his body.

Has anyone got a child like this already at big school, and what problems has it caused them at that stage?????

OP posts:
wrinklytum · 06/07/2007 21:35

Hels,I have no idea on this one,sorry, but hope someone comes along soon with advice xx

jambuttie · 06/07/2007 23:05

Hi hels9

You have described my son there!!!!

He is one of twins who are also 3 yrs old. He has been dx with development delay, joint hypermobility and hypotonia.

He becomes tired VERY easy and I must say he now never shuts up either LOL, as nice as it is for him my ears need a rest at times

deepbreath · 07/07/2007 23:42

My dd is 4, and has some of the problems you mentioned. Hers are part of a connective tissue disorder though.

Dd was fairly late walking, and even had difficulties with basic stuff like rolling over and crawling. She also had congenital hip dysplasia when she was born.

Has your son got any orthotics for the ankle pronation? My dd has got Piedro boots that her orthopaedic surgeon prescribed, and these have helped her walking a little. It is still painful for her to walk a reasonable distance, as her hips, knees and ankles are so lax that it pull all down her legs and feet. We have got a Major buggy too.

I don't know if you've already tried them, but some shops like ELC do chunky pencils, or pencils with grippers on. My dd finds these easier to hold than normal pencils. As for the school thing, I can let you know come September if nobody else comes along on here!

deepbreath · 07/07/2007 23:47

Sorry, I meant to say dd's problems are part of a genetic connective tissue disorder

hels9 · 10/07/2007 21:26

Many thanks for the message, deepbreath. You say your daughter has a genetic connective tissue disorder. Is this Ehlers Danlos, or another one, and did you know it ran in the family before she was born?

My son did have piedro boots at first, but his physio was keen to get him out of them as soon as he was able to walk reasonably steadily without them. She still favours not giving him extra supports at this stage, albeit if the pronation and level of flat footedness do not improve as he gets older, he may ultimately need extra support again to prevent joint pain later on. He can actually walk quite long distances, now, without seeming to be in any pain - when he first started walking, it did seem to cause him quite a bit of pain in his knees.

OP posts:
iwearflairs · 10/07/2007 22:21

This reply has been withdrawn

This has been withdrawn by MNHQ at the poster's request.

hels9 · 11/07/2007 14:14

Thanks for your message, iwearflairs. My physio has always expressed the opinion that Ben has BJHS, as she says she has rarely seen a child quite as hypermobile as he is.

The community paediatrician has only just started coming round more to that point of view herself - I guess she was thinking of more common reasons for his hypotonia and trying to rule those out, first, especially since he doesn't appear to bruise or scar abnormally. Also, there's no genetic test for BJHS, so I guess it isn't any more helpful for us to say Ben has that than it is to say he is hypotonic and hypermobile. So far, though, Ben doesn't seem to have problems with co-ordination, memory, attention, etc, etc, so I'm getting less worried about his hypotonia being caused by a problem in his brain. He also has reasonable muscle bulk, so a serious muscular dystrophy or atrophy is hugely unlikely, also. And hypermobility runs in both my and my husband's families, albeit it has never caused quite so many problems with other family members, before (just mild growing pains, flat feet, good party tricks!...).

Do you worry about your son being pushed over in the school playground and not being able to join in with chasing games, or is it just me?! My husband was never any good at sport, yet he had no trouble making friends. I guess it's just me being a bit paranoid, because I remember the school playground favouring those who could run the fastest.

OP posts:
RTKangaMummy · 11/07/2007 14:44

My DS is 12 years old and has just finsihed his 1st year at senoior school

He has Dyspraxia and HYpermobile joints esp in the knees

he runs differently from the other children is flat footed too,

He has had physio and OT

Swimming is very good for him he uses his arms rather than his legs but he is very fast now. He doesn't have the strength in his legs but his shoulder are very strong

he did get teased and still does actually

his co ordination isn't very good

BUT HE IS VERY DETERMINED AND SO NEVER EVER GIVES UP!!!!!!!!

Even in sports day at primary he kept running even after the race ahd finished -- I found the trick was to put a tubigrip banadge on his knees to help him BUT more importantly it made the other parents not laugh at him and the way he ran.

Cos they did one year and I was soooooooooo upset at the parents behaviour so each year after that I put the bandage on and they clapped and cheered cos they saw how hard he tried

Now in PE and GAMES he is still determined to try his best.

Good luck to you all

lou33 · 11/07/2007 14:52

i have 3 kids with eds type 2, dd1 is the worse affected, plus i have it too

it means they arent going to excel at sports, but i dont generally stop them from doing anythng, but trampolining

i restrict any repetitive high impact sports tho, esp in dd1, and just refused to let her run the 1500m fr her sports day, as last time it caused pain in her knee

they are hypermobile and bruise easily but i am of the have a go school of parenting

the one thing i would adise is to write to teh school and let them know he has certain problems and what he is and isnt allowed to do

ds2 has cp spastic diplegia, a bit of hypermobility would be good for him lol

lou33 · 11/07/2007 14:53

meant to say dd1 has feet as flat as ironing boards

iwearflairs · 11/07/2007 14:54

This reply has been withdrawn

This has been withdrawn by MNHQ at the poster's request.

hels9 · 11/07/2007 19:48

Many thanks to everyone who has posted a message, so far. We do take our son swimming as often as we can and he loves the playground, soft play area and gym class. It's good to know we're doing the right thing encouraging him to keep active.

Thank you RTKangaMummy for telling me about your son. I have worried about dyspraxia and aspergers in the past with my son, and still do, occasionally, as I know they can be associated with hypotonia. Ben's co-ordination, however, once he knows how to do something, is very good, and his social skills seem to be improving hand in hand with the improvements in his physical abilities. He certainly comes across as shy and awkward in company and does get a bit obsessional about things (at the moment, he enjoys singing nursery rhymes an awful lot and always wants our nursery rhymes CD turned on!), but he has always given excellent eye contact, he seems to have a good imagination and sense of humour, he loves cuddles and is happy with changes in routine.

OP posts:
deepbreath · 12/07/2007 16:47

Hi Hels9,

Sorry for the delay in replying. My daughter has got marfan syndrome, which I've heard affects the joints in a similar way to Ehlers Danlos.

My husband has also got marfan syndrome (his was as a result of a spontaneous genetic mutation), but our son didn't inherit it. He is less than a year older than our daughter. Our DD is affected in different ways to my DH, which is something that I didn't realise could happen.

iwearflairs, your DS's feet sound similar to my DD's! The poor woman in Clarks went green when she saw what DD can do with her other joints too

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