hypermobility and low muscle tone

[katek]

I was wondering if anyone can help me with any info re the above. My daughter's 4 year old nephew appears to have both and she is somewhat concerned as to whether or not she should say anything to the little lad's parents. As well as being very loose and almost floppy he tends to buckle at the ankle on one side if you walk quickly with him. He also dips very noticeably to one side when running. He complains a lot of sore/tired legs on walking but not when playing and is usually put in a buggy on major shopping trips. If you pick him up he tends to wrap his legs round your body much like a younger child. He is a very cossetted/babied little boy and granny still spoon feeds him and has been known to put a bib on him at times!This doesn't help in working out whether he genuinely has sore legs or just wants carried and babied. It doesnt alter the floppiness though.....no resistance to pressure when you put his shoes on. He also does a sort of crab like scuttle when playing on the floor with his legs out sideways from his hip joints.

Sorry if this is a bit rambling....it's just how it came to me. his parents seem oblivious to any issues and no diagnosis seems to have been made by a GP. Are my daughter and I being overly concerned??????

does he go to a nursery? Or is he due to start school soon as they will soon raise any concerns.

My DD (2.6) is hypermoblie and has the same/similar symptoms you have mentioned although she has improved with a few sessions of physio.

She can get herself into positions which I wince at and a few times has fallen and when I have gone to her, I have thought she has broken her leg but its just that she has fallen at an odd angle and being that more mobile looks wrong iyswim. At times it has made me feel sick tbh.

TBH it sounds like the "babying" he is getting is not helping him and hindering him in wanting him to do anything for himself ie feeding iyswim which makes it hard to know what he can do....

Could you stress he will be starting school/nursery soon and needs to do more for himself? To get him to be more independent?

I would steer clear from the issue of him being babied....nursery when he goes will tackle that, and I suspect you would might get a negative response. I would just focus on the potential hypermobility in which damage at an early age can leave a legacy of problems. For the sake of the little boy I would say something about his apparent ability to move his joints in ways which others could not, and tel them about a condition called benign joint hypermobility which can cause the joints to subluxate and dislocate sometimes without causing the pain which you would suspect. All you can do is mention the existance of the condition and suggest if they felt it was appropriate they could see the gp and ask for a referral to a rheumatologist to get it checked out. I say all of this as the mum of a boy with Ehlers Danlos, and extreme form of hypermobility basically, and he was diagnosed at 16 months, it has affected his physical development since birth, I stress again he has an extreme version. Good Luck

Thanks for the input....has def firmed up my thoughts on this problem. I will mention how flexible he is and see where I go from there. You're correct in that something needs to be done for the good of the child. I don't think I'll touch on the babying issue....granny would eat me alive! Will happily leave that to the nursery staff

I'd just like to agree with SparkleRainbow, my son also has EDS, and we went all round the houses for a diagnosis, finaly getting one from Prof Grahame at GOSH.
My son was late to walk, talk, feed himself, the list goes on, but this has all been linked to EDS and the effect this has had on his body, muscles, ligaments and mental health. There is a massive lack of understanding, but do go on the Ehlers-Danlos Support group web-site, and the Benign Joint Hypermobility one for information. Any information is empowering when you either suspect something is wrong or you are going through diagnosis. Good Luck, it's hard when your child, or a child you know has a disability that is little heard of, but there are support groups, and info out there.

People might think we baby our DD as we carry her a lot and spoon feed her but its actually BECAUSE of her muscle tone that she needs carried, and she finds it hard to use a spoon.

So please don't judge too much.

Sorry to hi-jack the thread a moment, but mycars when did you last see Prof Grahame? My Gp has been trying unsuccessfully to get my ds re-referred to him since ds has developed some new major problems, but we just haven't heard back. We have always seen him at UCLH and suspected that he had finally retired, but from your response I am now wondering if he is still doing some work out of GOSH? Hope so desperately need to see someone who knows what they are talking about!

like fanjo says, dd2 is a reeeeaaaaally slow eater because of her muscle tone and general difficulties managing cutlery, so we quite often shovel a few mouthfuls in - we'd be there literally all day if we waited for her to do it, and if we need to get somewhere in a hurry and haven't got the wheelchair or a buggy with us, i have to pick her up and heft her around. she's 7 next month.

i don't use a bib. but tbh i should, because of the low tone she has poor lip closure and often wears more than she eats.

her low tone is caused by cp though, not eds. same difficulties though. and same support available.

sounds as though an assessment would be interesting.

SparkleRainbow, we saw Prof Grahame at hosp in St John's Wood last month, so he is still seeing new patients.

katek, just on seating positions - we were recommended not to let our DD sit in the 'W' position on the floor, i.e. knees bent outward to the sides.

Slow eating here too, sometimes takes half an hour to get a few spoons in. It's difficult to know how hard to push it sometimes..

In hindsight (great to have some 20 20 vision somewhere) my ds asked to be fed for ages longer than the girls needed to be. Bad mum that I am thought it was just him being lazy, but perhaps not...... I still learn things all the time about hypermobility and EDS, even though I know more than most doctors now [hmm} and I have been having to learn for the last 20 years.

Sparkle etc I am having to justify why ds needs a wheelchair why I cut his food up there as complaint went in that I'm Babying ds allowing him to see himself as disabled this despite him scoring 8 out of 9 on the scale done by physio

Roundthebend - that is ridiculous. I can sympathise though I have had the Rheumatologist tell me labels are not helpful and that we don't want ds to feel different.......ARGHHHHH I could have swung for him. Tell me he could die at any time, tell him he can't swim, he must take painkillers daily, do physio to attempt to build enough strength to prevent serious dislocation, wear a rigid collar when doing anything slightly physical, never play football, rugby, cricket, ride a horse,.... the list goes on...but don't worry he won't feel different at all

Sorry Katek - hijacked thread with raw emotion, not helpful for you

Hi Sparkle, sorry, been hectic here,my son had a knee-cap sublux through 'doing too much', meaning just playing with his friends in the park. Its so hard to know how much will be too much, until after the event. As you say, physio on 4lb weights to build the strength is OK, but its hard going all round when they need a life of a child too!
We saw Prof. G at GOSH a year ago,but he is still available there, as far as I know, if not see if you can get referred for physio with Sue Mailard also at GOSH. It took us a while to find a Paediatrician who would/could do this, but it has been worth it, for the understanding of the condition, the support, and the push to get the education system to sit up and take notice of this 'invisable disability'.
Good Luck, its a comfort to have found someone else who has a child with EDS, its hard when so little is known about this condition. School life has been hell for my son!
Again, sorry Katek, for jumping onto your thread, but as you can see this condition is not an easy one for anyone to cope with alone, so if you feel this sounds familiar then getting a diagnosis early can only be a good thing. Good luck, and thank you for allowing us to use your thread like this. x