EDS Hypermobility

[SparkleRainbow]

I thought I would start a thread to see how many of you are out there, fighting the battles I am fighting. I have EDS myself, had genetic counselling and even though mine is quite severe I was told no problems with having children. I have three dc, the eldest my ds is the only one believed to have inherited it. He was diagnosed by Prof Grahame at 19 months, and has always had pain, but it wasn't until September last year that he dislocated vertebrae in his neck C2 and C3 by turning his head to talk to me. He has been in recovery ever since. In the last 11 months he has dislocated or subluxated his neck twice, his knee cap three times, his left shoulder three time and the fingers of his left hand once. He has missed so much school, he is in pain almost constantly, he has a health plan and risk assessment to be in school, he is depressed and frightened and he doesn't know at all how serious his neck problem is. I am constantly fighting with some of the Consultants, and school, but there are also some wonderful people too. I would love to hear others stories, very selfishly to know I am not alone and neither is my precious ds.

Hm pain wise im not sure .We have day times ones to help him walk and prevent more damamge to his knees and hips and stop him going over on his feet or we would if they could sort them out still waiting for them to come back .

Ds has pencil grip and slope we have been lucky in that the speech unti and the head in Ms side have been a great help and purchased thins .

We have been fotunate that Ot and physio reliase just how much problem it is and becuase of ds having other problems we are under genetics who have now refered him to see if he and me have EDS were off to harrow in May and then maybe to Gosh from there

had a bad few days, really really fed up.

dd2 in agony every evening and night (930pm till 2am last night) with leg and foot pain screaming and calpol/nurofen dont help.

gp thinks its her attention seeking and is 'learned behaviour to get attention from me' .

this is a child who was born with a dislocated toe, still hasnt got shoes as she screams if anything is on her feet, even a babygro. she is well behaved the rest of the time, she is really very good he wont refer her to see anybody he said i need to sort her routine out!!!!!! I want to scream iam so frustrated its obvious she is in pain, she isnt attention seeking shes is a baby who needs somebody to help her. he made me feel awful as if its my fault im a useless mother with no routine etc etc.

just know that something is wrong with her feet, her toes dont look right when she puts weight on her feet they twist and she hates having her feet held to trim nails she winces and cries .I am so frustrated.

I hope everybody else is ok today sorry for the rant, i went to gp expecting help not to be fobbed off and pretty much told that theres nothing wrong except my lack of routine and boundaries

Rant away it is so frustrating when no one will listern help our kids .Can you not get her seen when take ds just drop into the conversation

afraid few problems here more me ATM seems my hypermoblity has led to verterbrate moving in my back and has trapped my sciatic nerve inbetween them if no better needc MRI in 2 weeks but the painkillers might as well be smarties

am going to pay try osterpath tomorrow this is bad enough can hardly walk without sobbing just going from kitchen to lounge failing that back to gp for more painkillers

oh good news from letter through defintley 3rd may to see Dr pope and I got the family fund driving lessons now if only could stand up or sit down could start

hope you are feeling better today grtb4 that must be so painful i really hope it improves with seeing the osteopath.

sparkle hope you are ok today too and everybody else

good news! ds got into my first choice primary iam so pleased as dd1 goes there and i was worried as id moved since she started that i wouldnt get in but we did, i know he will be happy there and they will know how to help him

Hi, that's good news about the school Ariane.

Grtb4, I have nerve pain from my neck so I know how painful that is. I seem to pinch a nerve and free it, but the pain lasts days. There is never anything to see when I go to the Dr's (apart from me not being able to move my head!) Painkillers don't help much with this sort of pain.

Hi to MrsVictor and to Sparkle, too.

Hi everyone.

I am so sorry Ariane, your gp sounds so arrogant, and unhelpful. I would ask them to examine dd2 when you take ds to the hospital for his appointments. I did this with my dd2 and got them to rule out EDS and she didn't even have any symptoms, I just said would you have a look at her and see if she has it too. The Paed examined her quite happily. Really good news about the school though.

Grtb4 I hope you are all right. Thinking of you.

Hope today is an ok day for everyone. I am off to the hospital with ds later for a new collar fitting! He will not be impressed.

hello everybody hope today was a good day for everybody.

sparkle hope it went ok at the hospital getting the new collar.

grtb4 hope you are feeling a bit better today and that the osteopath helped with your back.

hello deepbreath and mrsv hope you are both ok too.

I didnt have a good day today, sadly found out yesterday that my dad has cancer so didnt really sleep last night and felt miserable all day. the dcs dont know but obviously picked up on the atmosphere so they all played up a bit and dd1 was refusing to get ready for school and got very grumpy then tearful.

dd2 was miserable all day as well, still grabbing at her legs and feet i will definately mention it when ds has his appt i hope they do have a look at her as its really bothering me and i dont like the way the gp dismissed it as bad behaviour on dds part or bad parenting on mine.

Im feeling really low tonight, unhappy and lonely and cant stop eating, i always comfort eat when im stressed and then i feel bad for being so unhealthy.i cant wait for the easter holidays iam so exhausted

Oh Ariane! I am so sorry, it just doesn't stop does it. Big hugs, I hope the prognosis for your dad is good.

Love x

he is booked for tests and an urgent mri, its an agressive type of prostate cancer and couple of years ago he decided not to have the biopsy i think he was nervous so things might not be too good, he is in his seventies too. iam really worried but can only wait and see what happens.really fed up

hope everybody is ok today

My father in law had prostate cancer last year. He had targetted radiotherapy, and it has been very successful. He is in his 70's too. I hope your dad gets some positive feedback about outcomes. I am thinking of you. x

I am crashing your thread; even tho' I am not a child and I only have hyper mobility

I am struggling somewhat with my diagnosis (& I am only about a third of the way through your thread)

I appear to have 3 conditions
CFS which may cause:
Tiredness
Pain
Confusion
Lack of concentration
Visual disturbances

Fibromyalgia which may cause:
Tiredness
Pain
Confusion
Lack of concentration
Mouth ulcers
Pressure points (all of them)

& Hyper mobility Syndrome which may cause:
Pain
No dislocations (apart from clicky hip, which can be voluntary or involuntary)
7/9 (not sure what I missed)
Double jointed as a child
Clicky hips
3 Miscarriages (?)
Pelvic floor collapse
Short sighted
IBS
Bad handwriting
Inability to run

Can you tell I am confused?

Hi, hope you don't mind me posting on 'your' thread everyone - some of you gave me great advice when we were going through getting DD (20 months) diagnosed.

Tomorrow is out first paediatric review since she received the Hypermobility dx before xmas. WE have yet to have a single physio app. though are on the waiting list and the opthalmologist has yet to call us up for her 6 month review (divergent squint) despite it being overdue and my reservations about a 6 month rather than 3 month re-assessment phase...

Just wondering if there is anything you guys think we should be asking about. DD has since become able to stand and now very recently walk - she pronates hugely but apaprently this is normal. She is in her first shoes and we used our non medical judgement to decide on proper shoes rather than first walkers to try and help support her ankles.

Feeling very unsopported by the HCPs right now.

Also should we apply for any DLA or similar? I have enrolled at the local swimming pool and envisage other expenses which I can ill-afford sadly as ex husband has lost his job and thus I'm receiving no maintenance payments currently. I'm really struggling and feel like I'm not supporting DD as well as I would like.

We've had blood tests which were all negative but I think they were looking for Marfan's - not sure what else though out of the several possibilities.

Hi Katymac, I am glad you joined us......sorry you are only 1/3 the way through the thread, we do occasionally rabbit away . Others will be along soon, holidays tend to make our posts slightly more patchy, well they do in my case anyway!
Not everyone on here has EDS, some have HMS, some have Marfans, some have other conditions as well, such as cp, and both dc and parents are on here with the conditions.

In the case of the symptoms that over lap between the dx you have, to be honest tiredness, lack of concentration, mouth ulcers and even confusion can be caused by living with chronic pain and being run down as a result, that is something that most posters on here would recognise. I am not saying that the other dx are incorrect by any means, just that living with pain is bound to run your body down. Your 7/9 score, are you referring to the Beighton or Brighton scales.....? Be a bit wary here as they are recognised as being a useful tool by the professionals but not necessary demonstrably helpful as they both miss most major joinmts in their assessment, and your hypermobility could be better or worse than these scales numerically indicate. Come and sit a while with us, ask some questions of the others when they surface. Welcome.

Hi Hobbgoblin, welcome back, our thread is your thread I hope I have answered in time before your appointment today, good luck with it.

At 20 months with a dx of hypermobility and walking she is doing very well. I would ask about the shoes you have chosen when you go. Has she had episodes of turning over ankles over? If her ankles are particularly hypermobile the a more supportive shoes is a real benefir. My ds has this but only in an upwards downwards flex, so his feet are well enough supported by regular Clarkes shoes, and especially little ankle boot styles. Others on here have needed more specific orthotic support with afos etc.
You need to tell them abouit any episodes of specific pain, or if you think she has had any subluxations or dislocations. You may need to ask them about pain management too, in terms of medicvation, warm or cold compresses etc.
Gsh I wish the others were around, can;t think what \I am mikssing out. .....Try and get them to put some pressure on the physio department to get some support, a good physio is so helpful.

As for DLA I am the wrong person to ask. I have applied for my ds and been turned down despite all his mobility and care issues, and he is nearly 8. However opthers on here have applied and been successful, so I would at least order the forms and have alook at what is involved. You won't get mobility allowance as she is so young, but you might get the care component.

Hobgoblin - my son, who has diagnosis of EDS Hypermobility is just about to turn three and we have only just got him some physio support. He was seen by a physio at around 22mths and they told us that there was little they could do with him from a practical level until he was nearer three years old. Their reasoning was that it can be very difficult to get a child of that age to do structured exercise of any sort and that if we "forced" him into it, we might do more harm than good. About three months ago, he started seeing a physio who specialises in rheumatological disorders and it has made a difference. I think we sometimes have to be patient, no matter how hard it can be.

As for DLA - we applied and got it awarded with no difficulties whatsoever (care component only as he's still young). We've also had great support from his paediatrician and from occupational therapy - so, there is help and support out there if you persevere! Good luck.

Hi

Ariane I am so sorry to hear your news about your dad .ibfound that we don't expect our dads to get I'll .myself I always thought of my dad as being so strong my dad my hero ( anyone tell I was A daddys girl.Hope treatment goes well.and fingers crossed help comes soon for dd

Sparkle how is ds Coping with his new collar ?you filed for that second stage appeal yet?.

Hi Katymac eds/hms is wide ranging and sympotns seem to confuse the so called proffesionals.

Hobgoblin ask to be refered to podiatrist/orthtics they may well look at small insert in shoe

now mynewss in anutshell .bad musclar back pain dx by gp erm well was not . Short story (lingers ones in health Called I can't pee

Was infact slipped disc turnedinto emergency surgery walked into AandE unable to pee and. Was seen by oncall orthpeadic dr who was on the ball( rare I know) who didnot like what was seeing called queens in London .

Cue urgent Mri consulant neurologist saw my results at3pm as out of theatre.3.30 pm I was in theatre suffering from a rather rare syndrome called cauda equina.disc had shot into all nerves base of my spine .as disc removed sadly it had become embeded in spincal cord so experinced tear init.

Good news is I should walk again canmove my toes ( bad news no one sure how much permant damage .also was told hypermoblity played part init as part reason disc moved he was admant it is Eds

After googling name I know just how lucky was that this time nhs on the ball.

But am fed up of staring at hospital ceilings.

Now finally in place with signal I'm back

Oh my........

I have been so worried about you, and rightly so it seems. How much sensation do you have? How are you coping with the dc? I wish I was close enough to do something to help.

hi have pm you but its not good and yup hypermobility has lot to do with it.The fears we all have ,have become real

but just nt the hypermoblity there has been some bad luck and some good the good being that the neuro had learnt of the CE syndrme theres rughly only 100 cases a year

I have pm you. Only 100 cases a year is not many to gain experience, so you were lucky to find a neuro with experience.

Bumping

Hope everyones enjoying th hot weather

How is everyone doing. dc back at school today..... ds is lots of pain, so I am just waiting for the call from school!

I have pm and instant messaged you Jcmg. Hope you are all right.

How are you doing Ariane, how is your dad?

ug is it the weather changes .?.How is he finding the new neck collar?

Not all schools back here ds1 and ds2 back today ds3 tomorrow and dd only in Thursday

Katymac how are you.
Ariane you holding up ok?

Think it is being so active in the last few days, plus we have been trying to do a little work on his gross motor skills, balls games and stuff, and it all just takes it's toll. having said that weather cahnges do make a huge difference, so it could be that!

dd only in on thursday.....your mum must be grinning through gritted teeth!