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.
Shoe inserts from orthotics. Only thing that helps the pain.
Does any one have experience with having a child who's non verbal and hypermobility? I'm desperately confused and I want to understand and help my son but I have no idea if he's in pain? His autism means he doesn't respond to pain normally, he isn't able to point to an area if he's hurt so I'm finding this really difficult.
What I do know is, my son has lax muscles in his arms and his hands, physio said his tummy muscles are low toned. His legs and feet are slightly tight and they need exercises to strength them out. My son rests a lot of the time, he still has naps even though he's 3. He refuses to walk outside and uses a wheelchair. He needs help to climb up and down stairs. He has poor upper body strength.
My 2 year old will run round everywhere and not need a nap, where as my 3 year old sits in his chair when were out, comes home and needs a nap and a rest? It's not right. He does have lots of energy but he needs that rest everyday?
I asked about shoes for him, because he is a toe walker, only at school, but she said sometimes it makes it harder to walk because the shoes are heavy.
I want to help my son and understand the difficulties but I don't know what or if I can do anymore?
I don't have experience of non verbal, sorry.
I do have a little experience of some of the co-morbid s of spectrum with sensory processing issues, dyspraxia etc.
what we have been told by physio is that aspects such as toe walking are difficult to understand how much is hyper mobility and how much is sensory. That is with a verbal child.
Sleeping could just be exertion of accumulated issues. When life isn't straightforward for whatever reason, life takes it out of them. Again this could be sensory overload or hyper mobility. DS1 would still ask to be carried to bed even when he was nearly as tall as me.
As an adult, I could sleep anywhere,anytime, any place. Afaik, I only have EDs.
I. Suppose what I'm saying is that the cause doesn't matter. Accepting that life is more work for your eldest than your youngest, and finding ways to support him is the most important aspect.
My 2 year old DS is hypermobile. Not sure to what extent. When he gets himself off the floor, he'll push up and then perhaps at the last moment he'll put a hand on his thigh. I've posted separately about Gower's sign...but if he was hypermobile, and not particularly strong, would this be the sort of thing he'd do?
Hi ds3 was non verbal to age 5 due to verbal and oral dyspraxia and hyper mobility in jaw still struggled age 8 almost and looking at speech devices
Hard one as often children with eds/hyper mobile often live with a degree of pain that they tolerate better than adults
Toe walking hard kne to call . Boots are heavy ds3 hates his wants his splints back looks like will get them to so he be happy
Hi lemony yes ds 3 foes that even now and was concerns around MD and they still not ruled out one of the more minor types . Can you ask for federal to neuro muscular ?
quick question in case its EDS (rather than POTS) - DD2 is currently in hospital with horrendous lower right abdominal pain. It came on suddenly yesterday lunchtime (she was sitting chatting them suddenly bent over clutching her belly). It's not appendicitis, but they're currently leaving us with the possibilities (as no actual signs) of a burst ovarian cyst (they've diagnosed PCOS, but that's a stupidly named condition as the "cysts" are actually follicles which don't generally burst like an actual ovarian cyst which is a totally different thing.. sorry rant over ); or mesenteric adenitis (which she doesn't fit the exact profile for, but anyway).
So, anyone have any thoughts about if severe pain in the appendix/right ovary area (bad enough to require morphine yesterday, paracetamol and codeine alternated today) has an EDS link? I agree that the pain might not be as bad as she's experiencing for anyone else (due to faulty pain receptors, I know it hurts her as much as she says) but am not going to play that down in the hospital (same hospital as rubbish paed/horrendous time 18 months ago, so need to be careful she doesn't feel they are not taking her seriously).
So, any experiences/advice which might help?
(I'm goin to encourage her to think it's the mesenteric adenitis as there's no actual test for that, as it's an "exclude everything else" diagnosis, so that she doesn't feel fobbed off, but it would be good to know if there's a link)
Has dd had in ultrasound ? If not push for one . If dd under Dr ninis calm her secretary to let her know dd admitted she may then be able to lean on them a bit
Also have they checked for twisted bowel or intestines as remtmber it's not just the Obvious external bits that are stretchy
god, Im so stupid, it didn't occur to me to contact Dr N . We've only seen surgeons so far, I need to get a medical doctor to have a look as well I think
Hello everyone, managed to lose the thread.
midnight, your poor DD. I've had an ovarian cyst before and I have EDS but don't know if there is a link.
THC 9 stone is an amazing achievement, well done.
Little update on us, DS2 started full time school this week. I'm a bit cynical about it all and we've had some screaming on the way home today. He's also on antihistamines to see if his red, swollen and hot legs and feet are an allergy/eczema thing or something eds related. In other news, baby 4 is due in July and was diagnosed with a cleft lip 2 weeks ago. I'm feeling ok apart from the continuing morning sickness and sore hips.
I can reccomend the cleft lip and palate team from Chelmsford ds3 is under them
Will they let him try half days also call the physical disability teacher team see if they will go into school ours has been a fantastic support
Still waiting to hear panel end of this month
Midnight how Dd? And you are not stupid At all far from it . Just sadly I had more experience with dd( not eds related ) am often dialing her paed after ambulance or aa werd enroute far easier to have care manged
Pst other news I'm 5lb of making it 10 stone . But am a completly healthy weight now . That show Drs who said only option due to Wherlchair be surgery but I knew after talking that it's dangerous in eds and wheelchair user so applied every bit of stubborn to dieting and stuck with it
DD is still in loads of pain, latest suggestion is that it's muscle/ligament damage (I've posted a thread over in general health asking about inguinal ligament damage), and she's been sent off with some different painkillers and "it should start to get better in a few days". GP was reluctant to refer for a CT scan (which is the only on invasive way to get a look at ligaments apparently), and wants her to stick it out on painkillers for at least a week, while at the same time admitting that pain at the level she's reporting which lasts for nearly a month, needs to be investigated. Sigh.
Anyway, how accurately should I be taking her pain level reports? We've had several instances with sprains where her pain has been unbearable, but as soon as a doctor or nurse tells her it's "just a sprain" the pain levels drop fairly instantly. But this time she's been pretty consistent in it being 8 out of 10, dropping to 5 (at best) with painkillers (apart from morphine when she didn't care ), so this time I'm assuming it is that bad.
Probably talking out of my arse but DS CP very stiff and deafblind experienced extreme pain. Was admitted for pain study and scored high on the GOSH pain chart. They were unable to locate the pain (he would scream and back arch for hours) It was decided it was neuropathic pain and was given Propanolol 20mgs and Amitriptyline 25mgs x 2 a day. It took a while to kick in but it worked.
yeah see i don't like GOsh and rather not go near them
midnight it could be nerve pain and normal medication wont touch there's specific painkillers for that .Ds is struggling to same place same level
and little word little birdie told me seems Dr ninis will be running NHs official clinic come SEp/October time.But were going May to see her she wants ds seen by neuro muscular/gastro/dietician and endocrine specialist so wants get in system
Hello all, sorry I have been AWOL for such a long while, just struggling to manage working and all the dc, as well as des specifically.....fun fun fun, no not really, just knack erred most of the time. What is happening for everyone....fill me in on the news.
im new to this thread
my4yr old dd has hypermobility diagnosed by physio at18months
was late walking,never crawled just did a kind of commando drag!
was discharged by physio after few months as she said dd was a very determined little girl&was doing things herself but if we had any concerns to ring her&she'd reassess her&do more exercises.
shes affected mostly in hips knees&feet&wears orthotic boots&insoles.we still see orthotics regularly
last time i rang physio after giving it the6months she told us to&if still no change then she'd do the above she gave me short shrift saying there was nothing more she could do&that basically she deals with kids who cant walk at all!!she made us feel like we were being overprotective parents!!
anyway this was2yrs ago&we left it with just orthotics&we also saw a paediatrician as dd was complaining of pain,but all was normal.also saw orthopaedic ppl a yr ago who said her probs should get better with growth&would see us again in2yrs
her left foot is the worst one&is still same no change at all since she was diagnosed&the right foot had got better&was straightening up
a couple of wks ago my dp noticed that the right foot is going over again like it was before so i got straight onto orthotics who have given us an app for this thurs morn&he also suggested going back to orthopaedic ppl which i have&weve got an app with them on3rd may
im wondering also whether to try get another app with another physio&/or paediatrician or just wait&see what happens with these first two?
as she starts school in sept we're a bit worried about it&need more help.i know we can get the orthotic school shoes&trainers too i think?but she is quite slow with her walking,tho lots better than she was&finds it hard to keep up with her peers when theyre running around.shes always way behind bless her
also shes never done the beighton/brighton tests.who does it?does it have to be done?
sorry for the long post am trying not to drip feed though im sure theres something i forgot to say!lol
she also has bouts of being sick.sometimes with diarrhoea sometimes not,every couple of months or so.
dont know if its linked to hypermobility?reading through the posts some think yes others no
i get ibs myself but dont know if shes too young?
shes never had any poo accidents though,wee ones yes but not since we broke up for easter
she was late potty training
In my personal experience a rheumatologist does the beighton/Brighton tests. At least that is what has happened for both me and my ds. In fact our rheumatologists run the medical interventions for us. Having said that, this might not be the case for others, where I think paediatricians run things. Not sure that really helps much babyjane.
thanks anyway sparkle
weve never seen a rheumatologist.noones ever mentioned it
hi Sparkle long time no see .how is ds coping at school and how is work ?
Sadly ds3 is actually getting worse ;( waiting on panel for getting him into a full time Physical disability school as it stands due to combination of needs he has no placement from this September .
Also we just been contacted by Proffesor Popes team who want to see him again as wants to run some extra tests partly trial stuff due to him having one type us the rest but it may give some answers
me well i been loosing weight so big change from when met me
waiting on Dr Ninis appointment to .
we finally saw rheumotlogist when ds3 was 6.was dx by physio who carried out first beighton score
ds3 wears orthotic boots for school and he grumbles as found splints easier we are hoping to go back to them
i would ask orthopeadic about refferal to physio if they do not suggest it.And yes talk to school maybe give them some information from EDs society about it .Also maybe ask the physical disability support team if they can contact you and school
Also yes IBs type can be affected by EDS so may be linked
ok so its the physio we should ask about doing the test then?should it be the one or both or doesnt it matter?can we ask for a new physio?
what are the physical disability team&how do i contact them?
is it necessary to see a rheumatologist?
im toying with ringing the paed again as i still have her no&figure it might be easier to do it myself direct rather than go through gp!
to look at dd now shes doing her usual dancing round&'performing'that she loves to do!lol you wouldnt think owt was wrong bless her!
Hi THC, sorry ds3 is getting worse! Still waiting for Dr Ninis, that has been quite a while now. I do hope Prof Pope has something more to add. Have you heard that Prof Graham has opened a private clinic in London, am thinking of making an appointment.....still not making much progress with ds and his rheumie. Ds is a little worse again, although not as much as your ds! He is growing again and it is causing a lot of neck, shoulder pain. rheumie And paed have finally come up with a plan about using surgical stockings to restrict ds' vascular circulation in his feet, and hopefully vascular instability which causes the pain.....now we have to wait whilst the Nhs works out how it is going to organise them, as they are not available on prescription.
We have had a review with continuous care for children with complex medical needs, and they have graded ds as worsening and needing more support, therefore have agreed to fund his ta for another year, and increase funded hours to 32.5' so a full week. Good news. Physical disability support service continue to be brilliant.
Babyjane the physical disability support service, or whatever your area calls it, are a dedicated service who support children with physical disabilities both in special schools and main stream schools. Contact you LA SEN team and they should be able to put you in touch with them. We have an excellent service, I hope you are as lucky. As for seeing a rheumie, they have typically been the 'experts' in Eds and hypermobility but many on here have gone via geneticists or a paed, so there is no definite route to dx, which you can find works for you. A physio can tell you what they think, and some are knowledgeable, but they should not really be making a dx, they are not qualified, but should be able to point you to the right person to get a dx. Sorry hope that makes sense, am a bit tired.
Geneticists here are running the show as paediatrician didn't think there was anything genetically amiss with all 3 DS. They seem to be quite on the ball - but early days.
Physio are very good with DS1 and give very helpful advice on the day to day practicalities.
What I would say babyjane is that as you can see, we all have different routes and different experiences. Don't be afraid to ask for second opinions and more support from other services that have not helped. You don't know which one in your area might prove to be the one that you get support from. Genetics only became involved with us after an internet search for the nearest dept and a speculative e-mail!
ok do you have to be at a certain level with the hypermobility?whati mean is theres different severitys of it so does it have to be a certain level for the physical disability support ppl to get involved?
i really appreciate all the help youre giving me
Personally, I think that the score is not an indicator of how much pain you can be in or how extensive the hyper mobility is.
Me and the 3DSs all score 8/9 and all have very different problems.
DS2 seems only affected with IBS and poor internal muscle control.
DS1 sometimes walks as if he's a 100.
We all have difficulties, the same dx of EDs , but it affects each of us differently. That is why any care plan should be tailored to the individual.
Yup I woukd not rely on scores to much I rate a 5 now a days but then they discount my Lower half sadly eds was partial complication . In my accident but that was a very rare and unlucky one
Ds2 rates a 8 yet his problems are internal with his bowels
Dd scores 7 but her only problem slight coordination and occasional knee ( touch wood been ok
Ds1 scores 7 but no problems
The thing they all share is crap handwriting so use laptops
Ds3 9/9 but he really struggles but has lots of extra complications . ( speech as affected face muscles / growth issues that may or not be related eds
So shows scores not always good indication
Gentics are good if dc bit following or confusing ( all have type 3 bar ds3 who has type 6)hence gentics
Sparkleyes that's where we saw Ptoffessor G at private clinic worth every penny
Surgical stockings may help wonder if flight socks from chemist may ti and bleah on the growing pains
Yeah sadly she has issues on funding seeing any more on nhs but they finally given go ahead to hopefully set up eds clinic but not till sep/oct so were doing one of private get things rolling in case I need tribunal
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