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.

Ds flat on back with neck pain....or is it avoidance tactic for physio and touch typing practice..have accused him of this and he looked hurt and said "No it really hurts"....

no sparke that makes you a good mum , sady for our dc is they stop when something pops they will never do an6ything

Local team pretty much leaveing me to it now which truth i prefer as for Gosh once we done this course they are going to be told to feck of and feck of again

I suggest waterprrof sheets have them not o much for bed wetting but for the hurling hoping you can save it

I have washable mattress toppers, thinner but can get them in the machine.

I would be putting bells on that "feck off" to GOSH, if I were you. Can you conntact the local team and get a good response if you need support?

I have heard from ds' physio, she has made a space for him in her clinic on Monday afternoon, not sure she will be able to help, but she will get him to see the rheumie faster than I can.

All washed now - well the top of it is - off to buy waterproof covers tomorrow. Will need them soon anyway but ds still in nappies on a night and probably will be for a long time - thank goodness he's skinny.

Thats good news on the physio sparkle.

Sorry GOSH are being so obstructive thc.

sparkle

We dont have any physios locally at the moment one left one on maternity leave so succession of locum

Hope goes well on Monday Sparkle

spider

Glad you got it washed

Would settle for any answer about his feet at this point. We will see what she comes up with on Monday. She is lovely and very supportive, so I know she will help if she can.

THC - a series of locum physios leaves no real continuity of care. It is pct's trying to save money by not replacing staff who leave. There is someone who goes to our local toddler group who is a paed physio in Birmingham, she can't get a job up here as pct is not hiring staff, even though I know that staffing has been cut in ds' physio team. She is having to work away from home three days a week, just to continue working in birmingham.

Things I thought I'd never say. Tonight to ds - 'will you please stop picking your nose with your toe'. How did he even think to do this let alone try it

Wow. I just came on here to ask a question about hypermobilty and learning/behavioural disabilities (sorry, new at this, don't know the correct lingo)....

DS i think has ADHD, also a bunch of tics and dyslexia. All relatively mild but att 8 he is starting to feel different to his peers and I am belatedly realising that is more than just free spiritedness.

This morning he was talking to me about his differences (many of which he is quite happy with), listing them. One thing he mentioned was his double jointedness (fingers, toes), which I'd never thought of as being part of the same cluster of unusual things about him.

So I came on here to ask if ADHD and bendiness are associated? It sounds like informally yes?

Sorry if this is a bit long. I wonder if anyone knows if ulcerative colitis can be 'caused' by EDS? My daughter is 26 and was diagnosed with UC about 2 years ago after about 5 years of being misdiagnosed as having IBS. She has since been hospitalised 3 times with flare-ups and has had to have IV steroids. She also has incredibly hyper-mobile joints (she can do the splits easily and can put her hands behind her back with both palms placed together pointing upwards) bend her thumb down onto her wrist. She gets really bad back and leg pains and had heel pain for years as a child. She also gets incredibly tired. She works full time and just falls asleep when she gets home. These symptoms get worse when she has a flare up of colitis. She has seen a rheumatologist who diagnosed hypermobile joints but when I looked into both conditions online I wonder if the bowel and joint pain problems could be linked and whether both could be caused by EDS. When DD mentioned this to the gastroenterologist he said there was no point investigating it because even if she does have it the treatment she receives for both sets of problems would be no different. As she is hoping to start a family in a few years time I wonder if anyone has any opinions as to whether she would benefit from getting an official diagnosis of EDS both for herself and in terms of possible genetic counselling? And if so, could any general hospital test for it? Thanks

tunaday

ds2 has eds and crohns and yes quite often gastro problems cna run alongside .the Uc treatement wont change what ever the cause .

but maybe some physio excersis may help with the pain and tiredness which may be caused by working hard and joints

eds can be gentic but it can also just be mild .Have 4 dc , ds1 raynuard and eds , ds eds physically no problems but crohns and gastro

dd eds except handwriting your never know .There is not a actuall genetic test for eds3/hypermobiled

Ds3 well he got the lot he has somehow got a completey differnt form to the rest of us

Thanks for that. It was the consultant who diagnosed DDs hypermobility who thought she may have EDS. She said she'd never seen anyone so 'bendy'. And when I looked EDS up (had never heard of it before) she def has velvety, stretchy skin that bruises and scars easily. I also was diagnosed with fibromalgia but since all this came up, I'd say I have EDS also and reckon my brother and my late Mum also. I didn't realise gastro could be part of it but it would seem logical that in DDs case all this goes together. I am worried that when she tries to start a family that with the skin being so stretchy generally that she may have problems in pregnancy which is why I wondered if a proper diagnosis may help medics supervise her better.

tunaday I have hypermobility and very stretchy skin. The only differences it made to me in pregnancy was that I had a LOT of stretchmarks. I had 6 with my first pregnancy that only got to 12 weeks, 64 with ds1 and about another 20 with ds2. I also had labours that took ages to get going and then really quick when I started established labour. The midwife I had with DS3 was convinced I'd be in labour for ages after spending the whole day stuck at 3cm. I told her he'd be out in 2 hours and I was only 15 minutes out lol.

Tunaday - Hi, I am very much a person who believes a dx is an important and even enpowering thing. I have met many medical professionals and educational ones come to that, who say things like labels aren't helpful. In my experience a dx is very helpful, especially with a relatively unknown condition like eds, a dx only becomes a label when small minded people use it as an excuse to exclude or excuse their own behaviour.

I have eds and have had three successful pregnancies. I have also had at least one early miscarriage. I have nearly as many stretchmarks as ellie...(Ellie girl I am impressed with your patience to count them , I had series of dislocations when I was pregnant with ds (my first) and suffered from very loose and sore pelvis with dd1. Ds and dd1 were a little early. All my deliveries were fast, but I have to say there were no big problems with any of them. I had my third, dd2, as a planned home delivery, so that tells you there were no worries. If your dd has eds hypermobile type then she may have more joint pain during pregnancy, may have increased chance of premature membrane rupture, will almost certainly have a multitude of stretchmarks, but equally the professionals say increased risks are small. Eds is autosomal dominant, which means if a parent has it there is a 50/50 chance of passing it on, but many people have eds and are not really troubled by it at all. Does that help?

spiderman - he is a boy, what can I say, he did it because he can!!!

himilaya - Hi nice to meet you. There is no apparent link between eds and ADHA as such, in that is you have eds I don't think you are statastically any more linkly to have ADHA, however if you have ADHA there does seem to be, anecdotally anyway, more of a chance of being hypermobile....I think...what do others think? Has he got pain in his fingers and toes, and does he dislocate or sublux (partially dislocate) them or any other joints?

Oo also Tunaday - I was dx by one idiot less than knowedgeable rheumatologist as having fibro too, haven't got it and never had.

Hi everyone, it's our half term this week so busy, busy, busy. Just want it over already.

Himalaya - We are new to everything but I am aware that hypermobility and dyspraxia often go together, and also that dyspraxia and ADHD often go together.

Ah spiderman, I am recovering from halfterm last week! Hope you have a good relaxing week with them.

Thank you so much for sharing your pregnancy/EDS experiences. I am so pleased all went well for you (despite the abundance of stretchmarks). It prob sounds daft but I was worried that if DDs skin is so stretchy that her womb wouldn't hold a baby and that it would stretch like chewing gum!! She is so desperate to start a family and I think she's worried whether the condition will affect fertility/pregnancy. Good to know about the likelihood of back/hip pain. She has a lot of pain at the best of times and at one point was put on morphine patches!!!!! She also walks with crutches when it flares up so I think if it IS EDS that she has it quite badly. I would like her to have a DX because if there are any advances in treatment in the future then she would be better equipt to know about them. It's tricky with an adult 'child' though, because I'm very keen not to interfere or advise unless she asks me. Hard whatever their age not to be concerned though. Your messages really give me hope that pregnancy/birth doesn't necessarily present more risk/problems. Also interesting to read about dyspraxia and EDS. DD has always had dreadful hand/eye co-ordination. Any sport involving a ball/bat/racket combo is completely beyond her. Her PE teachers always thought she was being deliberately useless but it wasn't a case of not trying. She just couldn't get it together. Saying that though, if she ever wanted a job at Circque du Soleil, I reckon she'd have no trouble with the audition!!!!! Thanks again.

It's amazing how now looking back DD had so many weird and wonderful health things (both physical and behavioural) going on as a kid and how neither myself or any medic ever thought to investigate if they might all link up as part of anything more global. It's only now reading what you all describe/question, that I am beginning to put things together and say 'aha'!!!! I wish MN had been around back then. And Google! I suppose finally being able to say that DD almost definitely has EDS at age 26 is better late than never. And also explains why I've always been convinced I've never had fibromyalgia and why my back seems to pop out of place if i sit on the floor and lean forward! It's good that there's now more awareness of the condition and that your kids are getting help with their EDS.

tunaday

adly though more awareness does ot translate to help.Ds3 has a statement mainly becuase of his other needs so have been able to tack the eds onto it

THC is right, we still have to fight daily to get support for our dc, but it is better than it was. Ds gets must more understanding and support than I did. I appreciate it is difficult Tuna, for you to discuss these things with you dd, and that you don't want to be interferring. We are here if we can help.

I can believe that there's not as much help as there should be. That seems to have been a problem with SNs since my DD was little. I remember parents then still going through hoops and having to fight and fight for every little bit of extra support. Sounds like not a lot has changed :( It's good to know that there are others who know about EDS and have some experience because up to a year ago I'd not even heard of it and I feel so sad for DD that since her colitis started to be a problem a couple of years ago, her life has changed so much. As a kid and in her teens she was full of energy - her evenings out started at 9/10pm. Now she's in bed at that time and is so tired out all the time and after a day at work she's totally done in. Because she's not had a DX and because its not a well known condition anyhow, I worry that she's not getting all the treatment available.

Interestingly I've just come off the phone with DDs psychiatrist (long story, she's seen him a couple of times because the rubbish paed thinks she has some "deep rooted trauma"; neither the psych, the Brompton doctor, nor Dd think he can be of any help whatsoever, but that's not stopping the paed , anyway...) and was filling him in on how's things have been since we saw him last, and he reckons there's a bit of a buzz about EDS in medical circles at the moment, so maybe that will filter down to GP level. He'd certainly heard of it, and knew it was a connective tissue problem, and he doesn't have a medical degree (psychiatrists can qualify by a different route apparently). Maybe things are changing?

I wonder what that is about. I have heard it mentioned on the telly a couple of times recently too!

Wow what a week. Our consultant (not a hypermobile consultant) initially told us that he could be of no help. This was disappointing especially after thinking some things were connected to DS's others medical condition.

However, we spoke directly to DS's personal physio today (lung physio) and asked her what we could do re leg pains and if physio could help. She has made an appointment for us to see another physio in the hospital to help his hypermobility! Plus it is a physio who used to do DS's lung physio so he will already be comfortable with her. Am pleased as punch that we can now help his aching legs.

Fingers crossed things start to change within the medical profession so that our children can get the help and support they need sooner.

be intresting find why such a buzz I may dig a little and chat with Proffesors pope when get a chance .He wants a muscle biopsy of Rio at some point was waiting if any planned GA but nothing so far so may go ahead .

Reindeer glad you can get to see a physio , dd is under the brompton for lung issues