hypermobility in a young child

[alandkim1]

hi there. have just found this site and joined. my grand daughter who is 18 months is not walking yet. the health visitor has told my daughter she thinks she has hypermobility. my daughter rang the doctor to make an appointment for her to see a specialist but the earliest one was mid august. as for her symptoms when she is sitting with her legs outstretched her left foot drops. also when my daughter holds her arms and walks she walks on the right foot and drags the left one. she also drags her left foot in the walker. she can also turn her feet inwards and put them behind her head. we then decided it might be better to go private as she would be seen quicker although just for a consultation for now. just wanted to know if anybody has had a child who had similar problems and what did they do. also waiting the four months for the nhs specialist would this make us loose four months of anything that we should be doing now. also only being 18 months old she will not be able to be told to do exercises herself but is there something my daughter could do with her legs on a daily basis. anybody with any answers would be most appreciated.

[Tillyray]

Hi .. I hope someone with a young child will be able to offer you further advice as I can only relay my experiences....I have been recently diagnosed with hypermobility ehlers danlos syndrome and so has my son who is now 21..

With regards to your query about NHS consultant waiting times.. I developed unprovoked ankle tendonitis, tenosynovitis which caused months of agony and disability. I waited six months to see a rheumatologist who 'mentioned' hypermobility - but did not make any diagnosis- and other conditions. I was sent for various tests that proved negative for the particular things they were looking for.I then waited over six months to be seen again, and discharged! Still in agony, disabled and ill..much worse and with a drop-foot!!..

I had spoken about my son - who has similar symptoms to me- to the rheumatologist who did say that he would also be affected with hypermobility...The consultants letter that followed - weeks later- spoke a lot of me having Hypermobility, but no recommendations or any other help..With this piece of information I did my own research which brought me to the EDS and HMSA sites and here, where I received great help and support.. I learned a general rheumatologist can not diagnose the EDS conditions, it is only a Hypermobility, EDS specialist who will recognise the added complications of hypermobility and then implement any necessary referrals to other consultants and physio etc..

My son and I both went to the private Hypermobility unit in London to see Dr Hakim alanhakim.com and I can not rate him highly enough. But I think he sees 16 years and over? Yet there may be other consultants there who do see children?..

Dr Hakim recommends Dr Pauline Ho on the NHS at Manchester Royal Hospital... If your granddaughter is going to be referred to an nhs rheumatologist, I would advise you ask to be referred to Dr Ho using the choose and book system if you live out of the area...Good luck, and very best wishes to you and your family xx

[alandkim1 in reply to Tillyray]

thankyou for everybody who responded to my question about hypermobility. my daughter has now received an appointment so will see how that goes. last week we spent a long time with a baby walker on her and she has now showed signs of walking with it unaided by us which has helped in lowering our fears of hypermobility. will still pursue a course of action though to see if the experts can diagnose her severity. thanks again

[cyberbarn]

Hypermobility can be a feature of many things, not just EDS. For instance those with Downs Syndrome are also hypermobile. And a foot drop can be muscular, neurological or anatomical, so until someone has examined her you won't know what is going on.

Would it be possible for your daughter to ring the secretary of the consultant that she has been referred to? Sometimes they run a cancellation list that she might be able to get on.

[Jay66]

Hypermobility is very common in children - in an average class of 30 in Years 1 and 2, 5 children would usually show hypermobility on a par with me. In most instances it is not a symptom of anything; children are supposed to have flexible joints, and they usually grow out of it. It can be very useful if they want to pursue certain hobbies. The best child gymnasts/dancers I ever knew were from 2 families with hypermobile children. They all had to keep working very hard to maintain that flexibility as they grew older.

Hypermobility is linked to a bit of clumsiness and delays in walking, and later on to some fatigue and 'growing pains'. Only a few hypermobile children go on to show EDS or systemic problems.

The best thing for your grandchild is that she gets plenty of exercise with others of her age to build up her muscle strength and stamina and improve stability. Can she be enrolled in dancing, gymnastics, trampolining or swimming for toddlers? Does she have nearby indoor and outdoor activity play areas she can go to, ideally with others of a similar age?

See this site for further info:

hypermobility.org/help-advi...