EDS Hypermobility No. 2

[SparkleRainbow]

We reached 1001 threads, so here we go with a new thread. This thread was originally started so we could get together and share experiences and expertise in Ehlers Danlos Syndrome, Marfans, Benign Joint Hypermobility, and any other medical conditions including connective tissue disorders which cause joint hypermobility, pain and all the associated symptoms.

I do hope everyone finds the new thread.

THC when I collected ds from school today, he just stood there at the door sobbing. Nothing had happened he was and is just exhausted. He seems a little better now I have got him home.

Couldn't gosh even tell you what was possible, or whether it was possible to accomodate you, seems a simple enough question to me?!

THC - the bookings all seem to come in a block - although they are running through the year. The house-keeping team are very good, and there will be others on your floor who I am sure will help you. You get a fridge in your room - supposed to be for meds, but most of us kept our wine stash there to be honest!
We sorted breakfast out ourselves at the patient hotel and the rest of the childrens meals could be taken at the hospital, if you wanted. The vouchers are just for 'food', so we would use them for snacks if my son wasn't hungry. The nearby Brunswick Centre has a Waitrose, Starbucks, Carluucios, and Giraffe restaurant [print off Giraffe vouchers before you go!]. There are also mini Sainsburys and Tesco nearby. - hope that helps. We stay here fairly often due to appts, and it has always been a blessing.
SR - that sounds so familiar, school was hell for my son, and until we get a management programe sorted after the next bout of GOSH and Northwick Park I will Home Ed. I was talking to NP about the struggle we had with school, and they said it was more common that they had ever imagined, and that it was unacceptable. It's not easy is it?
Love and hugs.xx

Hi all, I haven't posted on here before but am a regular on SN children so here goes.

My Dd3[8] has hypemobile joints, she is extremely floppy and uncoordinated, her motor skills were assessed by OT last year as being on the 16th percentile.

She has been having physio recently after I nagged the GP for a referral due to her continually falling due to twisting her ankles.

I hadn't realised how loose her joints were until she started physio but it seems each time we go they are focussing on a different joint and giving us new exersises. She has about 10 different ones now plus some from OT.

TBH, I need some advice, I have asked the physios to do a written report today about what they think is going on with her joints so that I can go back to the GP and see what he thinks we should do next and also so that the school can help with some of the exersizes[they are v,helpful].

Dd3 is also being assessed for Aspergers so I don't know if the floppy joints are related to this.

I have real difficulty in getting her to cooperate with doing the exersises, although she has recently begun to see the benefits of strengthening her ankles.

Hope someone can help.

I'm going to try to keep up with this thread, this time. DS2 has hypermobility, which I've mentioned frequently around the SN topic. After finally seeing a rheumatologist about my own rapidly worsening joint pain and the fact that I'm starting to completely lose movement in a few joints due to osteoarthritis at the tender age of 41, I've very recently been given my own diagnosis of benign joint hypermobility syndrome. I'd already diagnosed myself by the time i got there, so it was good to be asked "have you ever been particularly bendy?" because that led straight into "funny you should say that"! Anyhow, I have a "rehabilitation" appointment in a couple of weeks, so we'll see what comes of that

Ineedalife: If there's a common bit of advice I've had for myself and DS2, it's the importance of as much low impact exercise as can be tolerated to build up muscle tone, since good muscle tone is needed to support otherwise weak joints. (DS2 has ASD, by the way - I do suspect a link.) DS2 is younger than your DD, but his 1:1 at school took him to use the surestart softplay equipment every day and that has really helped to build up his strength. We live near the coast, so DS2's physio suggested walks on the beach and of course swimming. We don't take him swimming, since I can't swim and i certainly can't look after both boys in the pool, but that might be good for your DD if she enjoys it. And of course, painful as it is, walking. (I hurt more if i don;t walk a couple of miles or more a day, oddly enough)

Does your DD have any supportive footwear? Having Piedro boots with inserts has made a huge difference to DS2. I envy him them, to be honest - I have really wide feet and foot pain is my biggest problem, even when all my other joints are being nice to me.

Thanx ouryve, Dd3 walks to school and back nearly a mile each way every day, she swims at least once a week and does other kinds of exercise when we can ie, going to the park, ice skating, outdoory type stuff[I am a guider].

She will do her physio but just makes a lot of fuss and often ends up shouting at me, I can handle this but it is draining. She loves soft play and I still take her to our local one when I can, she also has a gym ball in the house which she loves.

She is being seen by a podiatrist next friday, with the view to having orthotics but we are finding it really hard to find sensible girls school shoes for her, she is a size 4 so they are all stupid ballet pumps or mary janes.

I found today confusing because last time we had a physio session we were told to stop one exercise becuase her hips are not stable enough and she was twisting her back and then today we were told that she must do i to strengthen her shouldres because the weakness there is afftecting her arms.

Am off to bed now but will check back tomorrow.

I sympathise with the shoes - mine either support my feet or don't hurt my feet (I have really wide duck feet). I've found absolutely nothing that does both jobs (and since square toes went out of fashion, nothing at all that does the latter).

And I also get the thing with stuff helping some joints and not others, too. My old mattress was getting saggy and i was waking up with really painful, stiff feet and shoulders. I bought a new, firmer one and my feet and shoulders improved almost instantly, but my hips seized up. After a week of no sleep, I'm back to being able to walk again (rather essential) but my shoulders and neck feel like they need some serious untangling.

Just to ad (damn the no edit function) that after a week of no sleep, I forked out more money for a memory foam mattress topper!

Hi, another one with a DC with hypermobility who is also being assessed for ASD. DS3 is 2.10, is particularly floppy in his lower body, and has only been walking since April (I still can't believe it as thought we'd never get there :)). He is big for his age and I just wondered whether anyone had any tips for helping him learn to climb stairs (just learned to come down them on his bottom) as he still has to be carried a lot?

ds1 is 7.5, has EDS hypermobility type and a diagnosis of aspergers. All I can say is, the stronger and more co-ordinated he has become, through physio and quite intensive practice at the things he finds tricky, the less aspergery he has become (he's still obviously quirky, but in a nicely eccentric and rather endearing way rather than in a socially isolating way), so it's worth perservering with the physio. He is so much more happy, confident and outgoing now that he is more physically capable of joining in with his peers. It took a year of quite intensive physio to get his strength up to a reasonable point, but since then he hasn't lost strength because he is able to be generally more active in his daily life now that his joints are better supported, despite dropping right back on the physio, and has made great gains from it. Learning the piano has also been brilliant - it made a colossal difference to the strength of his hands and is a good thing for getting a child to see the difference that perserverance makes, because the gains come pretty quickly. Far from being a child who shies away from anything he perceives to be difficult, he will now engage with difficulty and gets great pleasure out of his achievements. Basically, his self esteem has rocketed.

ps we had to do all the physio... the physio gave us lots of exercises and would send us away for a few months to work on them, etc, etc. It wasn't fun at first, as ds1 was initially very resistant so lots of time was wasted trying to find ways to get him to co-operate!!!! Ds1 also used to have piedro boots, then normal shoes for a while which didn't support his pronating ankles sufficiently. Now he has inserts in his shoes (called Sohlis, made by Thamert) which he feels make a big difference and they certainly made his running style look more normal - there's more of a spring to his step, now.

Ty cars

Will be back later but wanted share some good news totally of topic Got call yesterday evening from housing there's meeting next week and good chance I will be moving in January some time into a new build fully wheelchair accessible house

So cross everything please even has thru floor lift as Ot did not want stair lift as worried that my eds will be aggravated in my shoulders

Wow thanks all, it does seem like there is a link between hypermobility and the autistic spectrum doesn't it.

Rabbitstew... Dd3 has only just become aware that she can't do the things that others can and it came as a big shock to her. However since her school move she has made many friends who are wheelchair users so this is great for her as she doesn't stand out as clumsy and of course it fits in really well with her wheelchair obsession. Although her legs are covered in bruises from tripping over/walking into wheelchairs.

I am considering putting her into black velcro trainers for the winter while she is wearing trousers for school and then tackling the shoe issue again later. Am going to talk to the podiatist on friday.

Will keep on with the exercises as I can see a difference, I have motivated her with a trip to the ice rink this week which has worked qute well.

Zen1 - we very gradually built DS2 up, starting with kerbs, then small shallow staircases (plenty of those at school and his 1:1 used any excuse to make him walk them with her as his ability improved). It's been a long haul, though. He's finally steady on stairs at the tender age of 5, though we still have to supervise him, since he has no sense of danger and will practice his other new skill of jumping up and down, right in the middle of the staircase. He has also finally learnt to negotiate some stairs with alternating feet, though I think his recent growth spurt has helped with that.

Thanks ouryve. He can just about manage an inch or so raised above a flat service without help, so I guess it's just a matter of building on this. I wasn't sure whether to start teaching him to go upstairs on his bottom pushing up one step at a time as he negotiates single steps by sitting down on them and swinging his legs round before standing up. Carrying him around is doing my back in!

I added these research paper collections links to the first extra long thread, which may help explain some the genetics etc.
Ehlers-Danlos syndrome (EDS)
Joint Hypermobility Syndrome
Marfan syndrome
and two specific papers Joint hypermobility syndrome in childhood. A not so benign multisystem disorder? and The genetic basis of the joint hypermobility syndromes

Sparkle how is Ds

Hope everyone else got of to a ok Monday morning

Fingers crossed if I say... ds is having a good day today .....

It is lovely to see you have found the new thread, and we have some new posters....welcome. I will be back on later I just wanted top say fab news about the accomodation in January THC, and zen1 I would indeed teach him to "bump" up the stairs, or crawl up the stairs to save your back and build his independence and muscle tone, but I would also practicce the skill of lifting his feet to work towards being able to climb up the stairs as well....if that makes sense.

Be back later.....

No official recognised link is noted between EDS/BJHS and ASD....but watching the sen thread, mums' would asnwer that very differently I think!!!

Hope everyone is ok.
xx

THC fab news about the house, have fingers crossed for you. SR - when we were at Northwick Park they said that many EDS children get dx with ASD but the degree of which is hard to set in stone as so many EDS symptoms mirror ASD - confusion, low self esteam, poor co-ordination and an inability to sit still - due to unstable and painful joints, amongst aothers. I found this really interesting as we are also being looked at for AS but the findings are still incloncusive and 'grey area'. .....more tests on the way for that now!
Has any one any experience of Video Urodynamic testing - it's been on the cards for a few years and the procedure is now booked. My son has to have a GA - but becomes tachycardic with this, and the combo seems fairly daunting to be honest. He's 7.

My ds definitely has the low self esteem, poor coordination and inability to sit still, but he is definitely not on the spectrum, we are very lucky in that respect, becasue it is more than enough to handle what he has already.

Ineedalife - The rheumie suggested for my ds that we looked at ankle boot type shoes, as you might find at clarks or the like. So far his ankles have actually not caused too much trouble, and so I have stuck to leather velcro styles, which he can manage independently most of the time. I know that others have afos and similar though. He ds is v. hypermobile in his ankles, but only in a flex and extension, not in a twisting actions,so he turns his ankle less often than other will, and the right "normal" shoe/boot seems to be enough at the mo.

I asked the physios to do a written report when I was there on friday as we have nothing in writing about her joints. We are seeing the podiatrist this friday about orthotics and I have found some trainer type shoes which will hope fully give her a bit more support than she is getting at the moment.

She was finally Dx'ed with ASD yesterday so hopefully we will be able to move forward with getting her some more help.

Also wondering if we should get a referral to a Rheumatologist as my mum and niece both have serious immune system disorders and am wondering if there is a link to Dd3.

Trainers can be very supportive and comfortable, so it sounds like a good plan to me.

I would go for a referral to a rheumie, it was the first place I went to and my ds went to as well, from there they can refer out to other specialist consultants. I do wionder whether you need to see the geneticists as well though....... Just out of interest there are auto immune disorders in my family too....makes you wonder.

Sorry meant to say I am glad you have got a confirmed dx for ASD, but I am sorry, because I know that having it confirmed is a mixed blessing... big hugs.

Hi sparkle how is ds ?

Ariane hope you and dc and your dad are all ok .

Yes there is a fair few dc with asd and hypermoblity though no proven link .

Zen I would go with crawling Ds used to go up like a bear as time went on on his feet and hands ,Even now he still needs handrail and 2 feet per stair .

Ineed kickers or high top boots are often what they reccopmend as a first line in support infact sadly lots of hospitals do not give piedros any more

hmm see ds does not fit that pattern ,No asd but he does have poor cordination , no real low self esteem he is quite laid back though has the odd moment when he is sad that he cant keep up

I have had Video Urodynamic not for eds but it confirmed that my bladder does not empty send signals to tell me that i need to go and only sign is stre4ss incontineace where overflow leaks I self cath now at time I had 2 and bit litres sat in it

THC the clinic at Evelina are interested as to a link with EDS and bladder/bowel issues. My son over-fills with his bladder and has little sensation that he needs to go, and is becoming incontinent now. The bladder they say stretches [like the rest of him!], and like an over blown up balloon, isn't resuming it's natural size. He also has fast bowel transit. Looks like catheter may be needed, but they are concerned that his skin is fragile and may get damaged - we have used meds, but they aren't great. How do you manage now, if you don't mind my asking. xx