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EDS Hypermobility

1000 replies

SparkleRainbow · 13/08/2010 17:12

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.

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tranquilitygardens · 11/07/2011 23:20

yes that is a whole other post!

2000 and 1998!

I started a thread on parents with disabilities I think it is called regarding eds. I am emotionally ok about the dx of eds, no surprise at all, physically well... we are all in the same boat aren't we! Mentally, I was a little down after a bad injury and reduced mobility, mobility is getting better so I am not feeling down now, but having motivation issues!

SparkleRainbow · 12/07/2011 11:16

I will go and look for your other thread tranquility!

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TheHumanCatapult · 15/07/2011 13:55

ok i admit im more than bit worried only got dx week or 2 ago and al of a suddern we npw have flurry of appointments arriving to see various speciallist .Pleased but kinda worried nhs does not normally move this fast

SparkleRainbow · 15/07/2011 18:11

Confused What kind of appointments have they given him?

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TheHumanCatapult · 15/07/2011 20:36

rheumtology , cardio , Vascular , orthpeadic, neurologists , eye team neuro muscular team .specialist physio ditto Ot.ad thats just for starters

TheHumanCatapult · 15/07/2011 20:37

all based at Gosh al within next 2 months .bloody good job am near enough to travel in to london

TheHumanCatapult · 15/07/2011 20:38

am hoping its becuase it is rare they are all curious .There is only around 200 known cases in the uk and approxmitley 200 hundred thousand in the world which sounds a lot but not when you think how many people are in the world

SparkleRainbow · 17/07/2011 10:03

THC I am sure it is because it is very very rare, that they all want to see him, but also because I believe in those people down there and I am sure they want to help him. See I haven't lost all my cynisism.

You will be bombarded with a lot of info, can your mum go with you and help with ds whilst you listen to the info they are giving you?

Ds saw the orthopaedic spinal surgeons at Royal Ortho Hospital yesterday. We had to leave home at 7 am to get there! They had reviewed all his xrays and scans including the mri, and could confidently say that at present he has no scar tissue or damage to the spinal cord or discs. This is fantastic news. He also currentlt has a good width of spinal canal surrounding the column, so although that in itself doesn't make him any less likely to sublux it does mean at present he has a bit of leaway before the vertebrae damage the nerves. It means that the urinary stuff is almost certainly just EDS, he couldn't explain the numbness and pins and needles. He said there is evidence of minor sublux on the xrays but as no flex and extension xrays have ever been taken when ds is in extreme pain it is difficult to be definitive but greater sublux is most likely. The general chronic neck pain is most likely to be soft tissue injury as the muscles and ligaments etc work to keep his head and neck in place because the skeletal structure is not stable. He stressed this is the position today, and things will change as he grows, but I told him I would happily take today! They will continue to monitor him, and see him in 9 months for a full scan and xray to examine spinal column again and check for scolilosis. I know that ds has many challenges ahead with this, but it brings tears to my eyes to know just now as things stand today, the risks for him are lower than we feared.

No change in physio, or use of collar, or pain meds, but I got a stamp of approval for what we are doing.

Sorry a long one.

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SparkleRainbow · 18/07/2011 17:27

bump

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SparkleRainbow · 20/07/2011 17:02

How are you all doing?

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ariane5 · 22/07/2011 11:24

I have finally managed to get a chance to get on the computer after a really rubbish and very busy couple of weeks!

hope everybody is ok iam going to try and have a read so that i can catch up but thought id post first in case i had to suddenly get off the computer as something usually happens or one of the dcs needs me every few mins.

We are just about coping at the moment, ive had a lot of appts the past few weeks and have quite a few over the holidays too so its always a rush which is hard as iam so tired.

Ds has been really exhausted and extra fidgety recently and is very hard work at the moment, he starts school in september and they were lovely when i went to see them, they have given him morning sessions to begin with as by 2pm he is normally flagging and will just go to sleep if i let him so im hoping he will get used to school bit by bit and if he builds up his time there gradually it might be easier for him. He still uses the buggy everywhere and iam hoping the other kids dont say anything as towards the end of pre school he got a few "youre a baby in a pram" comments from the other little boys and he looked crestfallen. Itried a couple of times walking him but he fell, cried, legs and back hurt and just couldnt do it which then ruined his morning as he felt in too much pain to join in and play, Id rather push him there spare him the pain and tiredness so that he feels well when he goes in and has the ability to join in. Its ever so hard to find the right balance at the moment.

I have been in a complete state, ive been stressed and unhappy, iam struggling with the driving lessons i panic terribly and spend the hours before a lesson crying and wanting to cancel. I find the 2 hours a complete nightmare i think i hold my breath for most of the time iam driving i have to concentrate so hard and i panic so much. i feel like such an idiot!

ive just been diagnosed with a stomach ulcer too after spending 3 days in absolute agony the gp has given me omeprazole and iam hoping it helps as the pain has been awful. they said it is just due to stress as i dont drink at all or even really eat spicy food which she said can cause it so theyve given me tablets for 4 weeks and told me to try to relax, easier said than done!

sorry, such a long post and so much moaning!

SparkleRainbow · 22/07/2011 18:44

Oh Ariane.....a stomach ulcer on top of everything. Are you taking NSAIDs they will do it to you, stop rtaking them now if you are. You can move to Volterol suppositries if you need the antiinflam. NSAIDs are much more likely than drink or spicy food, even more likely than stress, which you have plenty of.

Ds's school sound good, and supportive, fingers crossed for sept. Who are you seeing appt wise over the summer?

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ariane5 · 24/07/2011 15:23

yes, i do take quite a lot of nurofen so that could be a factor as most days i take some just to get through.

ds has appts for physio and gastroenterologist and dietician about his allergies.

hope everybody is ok today Smile

SparkleRainbow · 26/07/2011 11:51

Ariane have you stopped taking the NSAIDs? You must go back to the gp, and get NSAIDs a different way. Your ulcer will never improve if you continue taking them, I know I was in the same situation 15 years ago. I had to move to suppositries, and then I developed an anaphalatic (sp?) reaction to all NSAIDs anyway. Sorry to nag you Ariane, but I am worried about you xx

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ariane5 · 26/07/2011 14:07

yes i have stopped taking them the gp also has suggested that i stop my antidepressants gradually over the next 2 weeks (citalopram) as she said they can sometimes aggravate an ulcer. the omeprazole seems to be working, Iam seeing gp again friday they might give me some antibiotics (didnt know they could help ulcers?).

Gp said i can take paracetamol based painkillers and said that if my neck pain gets severe again she might give me diazepam?sp. every so often i wake up not able to move my head and in agony down one side of my neck and back and with my left arm numb and tingly and painful in places.

I feel a bit like im verging on a breakdown at the moment, its the school hols so things not as hectic but iam really struggling with tiredness and iam in pain and thats just making me grumpy, i can just about cope normally but i feel lately that im getting weaker and in more pain, thinner and i just looked completely drained Sad

The dcs are being good, they have all been unwell again and on antibiotics so they are tired but no appts today so iam having a sit down while the baby has her nap .

SparkleRainbow · 26/07/2011 18:02

I am glad you have stopped them. I know supposits for NSAIDs sounds awful but it does mean you can still get the anti-inflam without damaging your stomach lining. I guess the antobios are in case you have a secondary infection. You can ask about Zantac, which I took for a year to heal my stomach lining. It is sold at reduce strength over the counter as an indigestion aid, but it was actually developed as a drug to heal ulcers and it worked for me, you have to take it for a while, but I had no side effects at all. Omeprazole is good my dh takes that too.
You could also ask about getting a tens machine for easing things like spasms in your neck. I found my usful when I lost my disc and I was in so much pain.

Try and rest as much as possible whilst you don't have to do school runs on top of everything else. By next week the dc will be feeling a bit less tired and that will help I am sure. Big hugs.

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ariane5 · 28/07/2011 09:54

idid try zantac first i got some from the pharmacist before i knew it was an ulcer i wonder if i could take it again once ive finished the 4 weeks of omeprazole? I saw gp again yesterday, had to make an emergency appt and call my mum over at 8am as i was in agony. gp doubled my daily dose of omeprazole to 40mg so im hoping it helps but am sitting here in quite a lot of pain again (everytime i eat i get terrible pain)i am considering getting some of those milkshake type drinks with all the vitamins in and just trying those cold to see if i can tolerate them as eating has got such a struggle and i have been having to force myself and then suffering for it, even bland foods are not helpingSad this was really the last thing i needed.

ds is not happy today, had a bad night with back pain so he is extra fidgety and tired now and hard work.Im going to my mums as soon as the pain subsides a bit and i can get ready as i cant face a day stuck in on my own its just too hard to manage when i feel so ghastly. my ex had to come round again last night untill about 9pm to help getting them to bed etc and i feel like such a burden to everybody.

auntevil · 28/07/2011 12:00

I've often thought about lurking on this thread, but OT confirmed hypermobility in DS yesterday - so now I have plenty of questions! The main one being genetics. I have 3 DS - it is the eldest with dx. What are the likelihoods of the other 2 exhibiting any problems? All have gastroenterological problems, from a little research (very little Blush ) there seems to be some links between hypermobility and gastro issues. Has anyone else found this. If so, how do you go about getting a link accepted between hypermobility rather than a dx of IBS - which they all currently have?
Also any general advice welcome. What should a newbie know?

TheHumanCatapult · 28/07/2011 13:51

Have just caught up has been bit manic here but Sparkle that is fantastic news well you know wat i mean ,so pleased that it was and even mor ethat they will now keep proper eye on ds.and 2 fingers to the other guy

ariane

The amount of stress you are under im not sprised stomach ulcer but yes sadly ibrupoen does cuase /aggravate to .i would call your gp in soem cases teh ulcer can bleed .So may need to get it checked out .sorry ds not good either

Aunteveil

Geentic wise well I have ds1 ds2 and dd and myself with eds type 3 and ds3 who has EDs type 6 .type 3 is a domant gene and type6 is recessive so cropped up on him as seems i carry the recessive gene for it.

and yes ds2 has bowel problems linked to eds as it is connective tissue disorder and the bowle is a tissue . ds1 and ds2 both have raynauards which is alos linked

Hypermboblity though physio cna dx it ~ideally you need to see rheumotolgist for eds type dx and would reccoemnd Proffesor Pope he is fab

Our news well now used to the dx now and am trotting here there and everywhere and am back to GOSH in Septmeber for dr C Pilkingon clinic rather than proffesor Grahams due to the dx .But relieved we now now what is going on well sort of as information in very short supply but even the local proffesionals are struggling.Ds3 is doing pretty well touch wood and we just been to Monkey world and then peppa pig world curtsey of the dream team charity

of camping with SKITUk next week so shoudl be fun if not kackering

SparkleRainbow · 28/07/2011 17:35

Auntevil I agree with THC you need to see a rheumatologist now to get the dx confirmed, and on the books of the experts. If it is Benign Joint Hypermobility Syndrome, or Ehlers Danlos Syndrome Hypermobile type, then it is an autosomal dominant gene, which means you do not need to have genetic input from both parents, and if you have the gene you have the condition, there is no such thing as a carrier. It is considered to be a 50/50 chance of passing it on. I have three dc, and so far we believe that only my ds (eldest dc) has it.

Physio and pain meds are the ways of managing the condition, OT support and support within school can be invaluable too. There are apparent links to gastro issues. Just flicking through this thread you will see it again and again. It is recopgnised on some support groups, but my and my ds' consulatants are a bit less helpful about understanding the links, but maybe we are unlucky. My ds has food allergies by the way, and struggles to gain weight, others are affected much more severely. Some of his food allergies I would describe as intolerances, rather than allergies. His reaction is to get stomach pain, cramps, constipation or the opposite, lethargy..... sounds like IBS symptoms to me, but I know it is all related.

General advice.....things will occur to me after I have posted this but for now....pain means stop, there is no benefit in pushing through the pain, only damage (Prof Grahame told me that), subluxes and disloactions will happen easily, they will also often reduce easily (go back in) , but they still hurt.....a lot! Beware unnecessary x-rays, many x-rays will need to be taken so if not necessary don't have them. Soft tissue injury around the jointsd is common, warm and cold compresses can help. Watch out for poor kinesthetic awareness, falling regularly, poor gross motor skills, probelms with handwriting, problems with sitting still, building muscle strength around affected joints is important, asthma, gastro, cardiac issues can also occur. Don't panic, most poeple with EDS or hypermobility have little problems and live long happy active lives.

THC I am glad you are feeling better able to cope with the dx, I guess the appointments will help too, because you are actually going somewhere in getting him the support he needs. How is he doing, and how is DD too?

Ariane, I would go back to the gp and ask about zantac. The dose you can get over the counter is a fraction of what they gave me fr healing my ulcer. I sympathise, I can remember how awful I felt, but you will get over this and be all right, I made it, so can you. Big big big hugs. I think i was told small meals often to help reeduce the amount of time my stomach was empty, it helped reduce the sickness too. But don't take that as gospel, it was a long time ago and advice may have changed, perhaps another thing you could ask the gp?

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SparkleRainbow · 28/07/2011 17:37

Oh and I found out on the last day of term that the local authority have agreed to allow ds' school to accept dd1 too, even though it pushes them over numbers. Wow hoo only one school run, no unnecessary walking for ds, ds will no longer be late for school every day, and can fully integrate. Dd1 is thrilled, and so is ds, when she told him he dropped all his bags and hugged her Grin

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ariane5 · 29/07/2011 08:49

that is great news sparkle about the school, it will definately make things a bit easier with just the one school run iam really pleased for you all Smile

auntevil iam not sure exactly how it all works with the genetics of eds and how it is passed on (but i think sparkle put down about it being 50/50 chance and about it being an autosomal dominant gene)I have eds hypermobility type, as does my ex partner and all 3 of our dcs have it but ds seems to be the most affected in terms of his joints and dislocations whereas dd1 has other complications related to it (pectus excavatum and POTS).

All 3 dcs and myself have mild gastro problems, all 3 of them have suffered with stomach cramps and constipation (dd2 quite badly and has movical laxative to help with this) ds has quite significant issues but i think it is more to do with allergies than eds.

myself and my ex had skin biopsies taken at eds clinic to make sure the diagnosis for us and dcs was correct as my ex has quite severe symptoms and they wanted to check everything thoroughly.

hope everybody else is ok today,thc both ds and dd1 seen in dr pilkingtons clinic and also see sue maillard the physio at gosh they are really good

auntevil · 29/07/2011 15:38

Me and DH played the 'blame game' last night - although it is really just a game - of course he gets his good looks from me Grin . I do not know anything about my natural family, but me and the 3 DS have IBS - food intolerances and are very atopic in general. Over the years I have had a few problems with knee ankle and foot joints, but nothing that i would say was out of the ordinary. But DH's family are not without issues of asthma, back and knee problems. I know my FIL had quite pioneering back surgery a decade or so ago - it looks like he's been filleted. My MIL has knee ligament issues - surgery on one of the next week and the other when she's recovered from the first one! So perhaps there has been mild elements on both sides?
Lots to think about - thank you. I should get the full report back from OT soon, so I will take to the GP and ask for referral to Rheumatologist. School are already on board. He has OT each day to keep his fingers working to keep up with the writing Sad , and he already sees a gastroenterologist, but i will chat at his next appt. re any possible links.
Sparkle - Grin for the school run. Not only good for your DD and DS - but also for you. Less stress, hassle, extra time in the morning etc - and also only 1 set of school letters! Result!
ariane - I love GOSH too. DS3 attends for different reasons, but i would love all children's hospitals to be run in the same way.

SparkleRainbow · 31/07/2011 08:03

It is so difficult to see where I got it from in my family too, and I know it is only me and not dh. We think I must have got the gene from my dad, he is deceased, but it isn't clear. The thing about these conditions seems to be that you can be slightly or greatly affected. My dad never seemed to have any problems, my sister and I just twisted lots of ankles wehn we were young kids, I didn't start with proper joint pain until I was 16, my sis didn't start until she was nearly 40! My ds was born with pain and the problems he has, which are much more diverse than mine. They still can't explain some of my ds' symptoms convincingly, or at all it some cases. That is why I find being on here so helpful, because there is such an overlap of dc symptoms on here.

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TheHumanCatapult · 31/07/2011 08:20

good news on the school runs .And with 2 in should mean youngets gets a place when old enough.

Aunteveil

Iblamed myself for along time as pretty obvious i was the main party to it as all 4 ofmine have Eds and older 2 have differnt dad to the younger 2.And ialso passed on another geentic condtion to dd .

3 and myself have type 3 which is dominat ds3 has completleydiffernt kind and is a recessive gene .It is just one of those things apparentley .And he is defintley more affected than any of my others .

Ds is doing well struggling with some of the excersices as he jjust can not balance on his side .Sadly they are mostly for lower body but course he is affected right through .Am hoping Gosh can help us .

But was confimed ds3 does have start of scolios wich will need to e monitored and sadly chances are by time he reaches 20/30 he willbe in a chair f/t.

Ironic as we worked so hard to get him out of using his .he does well samina wise but gait and pace is a problem and next day he is wiped

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