Here some suggested organisations that offer expert advice on SN.
EDS Hypermobility 3(826 Posts)
Not sure how to start this off so I'll just copy and paste sparkle's opening post from the last thread and hope I've spelt hypermobility right in my thread title .
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.
that's a long time I think things should be done faster not fair all the waiting
I wish they could be. I may ring the paediatrician's secretary in a week to see if I can have the results over the phone. I think they like you to wait so things can be explained fully, any questions be answered and the next steps identified but I'm just impatient.
There are no specific blood tests for eds hypermobile type, however there have been some studies indicating low vit d levels for some with eds. Other blood tests will be done as part of a differential dx during which they rule out other conditions.
The wait for results and general confusion over dx is normal for eds I afraid.
But there are super people on here to hold your hand whilst you are waiting.
Thank you. It's hard work as ds1 is going through an asd assessment alongside ds2's eds assessment so I'm generally fed up, stressed and frustrated
I must remember that we're lucky compared to a lot of parents and families as my boys may have a few more issues than the majority, they have a lot less issues and less severe issues than many.
Perspective always helps, but it would still be nice if we could get more constructive and faster help!
Hahaha, took DD to the GP today, saw the new one we're "training up" who it turns out did a stint in paeds at the local hospital. I asked for a referral to there as per Dr Ns last letter (as current meds are hospital only) and explained why we never wanted to see Rubbish Paed again. GP smiled knowingly and nodded thoughout and said "yes, I know ALL the doctors there AND the issues" . So we now have a GP who will keep Rubbish Paed away as she agrees that he's rubbish .
How is everyone enjoying the holidays? We're off on a cruise next week which seems like the ideal way for a POTSey person to tour - different places but your own bed for naps. It's a bit port intensive (6 ports in 12 nights) and we lose three hours on the way out, but will hopefully be worth it. Umming and aahing about taking the crutches
which haven't quite made it back to the hospital just in case as I don't fancy having to navigate Russian A&E to get some if there's a problem . Can't decide if it's a bit tempting fate to pack them.
Good news about the gp Midnight!
Take the crutches you might be jinxing it if you don't!
Hi! We had Physio today and she's very happy ds2 is crawling. She is referring us to orthotics now even though he's "many many many months away from walking". What should I expect?
Do you know what she is expecting orthotics to do? Orthotics are not just foot/walking related.....my ds has splints and cervical collars from orthotics too.
Seeing dr Ninis next week, fabulous news!
I think primarily ankle support but not totally sure.
They can get those nice little boots with ankle supports.
Hello everyone - bit quiet on here!
Holiday was great (didn't take crutches in the end), DD managed everything bar the last port day (Amsterdam) as her knee "clunked" so walking was painful, and only had a couple of afternoon naps.
We're off to see Dr N tomorrow - need to discuss how we manage exams next May/stress levels/what to do about brain fog, as well as DDs -pretty nonexistent--sleeping. Also how we manage repeat prescriptions till the new local paed referral is accepted, as I don't fancy trekking up to London if I don't need to.
Bit of a plug for anyone with POTS - the STARS Patient Day on 20th October has Dr Blair Grubb (top POTS specialist from the States) speaking - I heard hi nurse practitioner a couple of years ago, and she was v good indeed, expecting even better from him!
DS1 (6) has EDS, though luckily quite mildly - he reached early milestones ok and is mobile. He has a Beighton score of 6, plus marked hypotonia in his spine and abdominal muscles, hyperextends and locks various joints. He has chronic back pain, "growing pains", struggles to sit in a chair for long periods in class, fine motor difficulties and poor body awareness.
But because he's mobile, doesn't look physically disabled (if you are a lay person with no specific knowledge or training) and doesn't often talk about the pain (because its normal for him), school just don't get it. They alternate between not believing he has anything up at all, and saying "well if he occasionally needs to sit on a beanbag to rest his back his needs can't be met in a mainstream school".
Right now he has severe back pain and they won't even let him sit on a sit and move cushion (they've lost it) or take movement breaks.
How on earth can I get them to
- believe in EDS
- actually follow advice from OT and Physio (private ones, local community ones won't accept the referrals)
- be kind to a 6 yr old in pain
We saw general paed consultant and apparently he doesn't have EDS because his thumbs don't bend backwards and he's short.
His gastro consultant was amazed that a kid as flexible as him reached ordinary motor milestones. DH and I both meet diagnostic criteria, though his more about massive flexibility and I make it in based on secondary criteria about pain.
DS1 does not therefore officially have it, which is part of our problem.
Hi, am I in the right place? Awfully quiet in here. Popped in to introduce myself but I'm all alone.
My friends little girl gets extra support for something else entirely but apparently you don't need a diagnosis- just a report of the child's needs. Our local physios took referrals for both of ours without a formal diagnosis. Sorry you're having a bad experience.
I have a 3 year old who is refusing to walk anywhere all of the time and says it hurts. My dad, nan and a cousin all have eds and I am pretty hypermobil (I have never been assessed as dont have contact with that side of the family but have ongoing hip issues as well as various joint pain, regular pins and needles in hands and feet, really bad posture etc). I am wondering if my son might have EDS and if so who the best person to talk to would be? my doctors always look at me like I'm wasting their time despite us hardly ever going to the doctor (hence my hip issue not being resolved as they did blood tests which came back negative and I havent been back since). I have made a double appointment for myself and my son for next week but wondering the best approach to actually be heard rather than them saying 'oh its nothing to worry about' which seems to be their default response to everything.
Hi, I have just found out about Hypermobility from my (6)DS referral to the podiatrist, he has given the diagnosis of HMS and flat feet which is causing him great pain in he calves, mostly a night. He is going back Friday to have insoles fitted, which I hope will help with his walking.
My 13 year old is still awaiting her referral, she is a lot worse, can bearly walk and has been bullied to such a degree (by pupils and one teacher!) that she has developed school phobia and depressed. I am relieved in a way as after 12 years of being fobbed off by doctors and paediatricians, I can finally say, told you I was right when they dismissed me again and again.
Are there any excersices that can help my 13 year old? Her pain is mainly in the hips. Her main problem is walking, it's painful and her feet cross over to such an extent, she repeatedly trips over herself and people think its fine to comment, call her names (spastic is the most common one ) and family think shouting at her will magically make her walk 'normally' !
I want to get her back into living in the world, not hiding herself away from people that think the can comment and tease her for the way she walks.
Message withdrawn at poster's request.
as expected dr said 'oh its nothing to worry about' with my son and fobbed me off by saying oi have an imflamed hip joint and gave me anti inflamatries but has no interest in investigating why it is inflamed! argh!!
Hello hope no one minds me jumping on this thread?
My Ds 8 has recently been to a podiatrist due to flat feet and left foot turning in. He has been complaining of pains in his ankles, knees, hips, and back (also wrist, hand, and fingers)for sometime now. We took him to the GP months ago but he just told us to be sure he has correct posture while watching tv or on the computer .
Anyways the podiatrist noted hypermobility and has also referred to pediatrics due to DH having rheumatoid arthritis since he was young. He was unsure though because DS has no swelling but displays all the day/night time symptoms of arthritis.
Can I just ask? When DS was asked to walk on his heels and then his toes the podiatrist noted that he didn't mirror his feet with his hands while he did it? Does anyone know why this may be? I know it may be a silly question but as the podiatrist was assessing DS this was something he quickly made a note of on his form while most other things he didn't seem too bothered by.
Oh my word, I have completely killed this thread!
What do you mean by mirroring his feet with his hands? Do you mean swinging forward the right hand when the left foot goes forwards? Or do you mean he was supposed to tip his hand up when on his heels and down when on his toes?! (Which would be a very odd thing to do, imo...).
Hi rabbit. The podiatrist demonstrated/talked me through how he should of done it but didn't go into detail as to why he should of IYSWIM, so when he walked in a line on his heels he should of had his palms facing behind him and swung his arms as he did each step. Then when walking on the sides of his feet his palms should of been facing in towards his body etc. he only noted a very brief 'mirroring' with the left hand throughout all of the tests. If he hadn't of shown me I would not of known what he was talking about.
TBH I was still none the wiser as to whether it was the swinging of the arms or the palms (or both) that he was looking for .....I must learn to ask more questions when in appointments
Hello, I have just got DS's report from the podiatrist. It was the Fogg's test (which mentions mirroring) It says negative, I am guessing from what info I can find that's a good thing?? so the little bit of mirroring in the left hand was nothing to worry about....trust me
DS was negative for the pGALS, Gower's and Romberg's tests also negative.
Gait examination revealed forefoot slap and a toe heel gait pattern, he was tight in the calf muscles which would account for DS's toe walking. In general DS is hypermobile (Beighton 8/9). Lower limb symptoms are likely due to Benign hypermobility, but due to family history of arthritis a referral for a Rheumatology consultation is necessary.
As always the mention of other referrals e.g physio due to gross motor skills being somewhat delayed although still in the average bracket has vanished without a trace?!
I can stop confusing everyone now
Is this the latest thread or is there a 4? Dd may have marfans but I'm hoping it's EDS (I'm in denial about myself so focussing on her)
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