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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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TheHumanCatapult · 05/07/2011 17:52

lol love it Sparkle .Though i suspect he will not send till they are requested

Well my new got through to genetics andconfirmation is there Riordan does not have type 3 Eds he has the rarer type 6 crossing into 6b .She agreed my letter did seem to imply that he had type 3 but was more marked than you would expect but paeds bobmshell letter was something else .

copy is now on my way and am completley floored

ariane5 · 06/07/2011 15:09

hello, i have been trying to have a read and a catch up, hope you are all ok.

we are not doing too well, very tired and ds on antibiotics again but hopefully things will start to improve a bit soon-i say that every time dont i!!

SparkleRainbow · 06/07/2011 18:16

Oh THC Type 6/6b this a bugger beyond belief!!! I am so sorry. I am going to google away over the next few days, so I know more than I do, just in case I can help. How are you doing too? How is the rehab going and how are you coping with everything at home.

Ariane....at some point sometime it has to get better doesn't it! How is your dad?

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TheHumanCatapult · 08/07/2011 10:20

Hi Ariane , glad to se you back bugger ds is poorly again .How is your dad doing .?

Sparkle no rehab now home am waiting for pysio but am comping pretty well now adjusted but do get tired

Sadly type 6 is one of the more scarey serious ones ;( involving arterie and progressive muscle issues and spine issues to

TheHumanCatapult · 08/07/2011 10:38

how is ds getting on has he got used to the new collar?

mummyplum · 08/07/2011 10:53

Hi there - i posted a while ago about my daughter and had lots of lovely replies. Community paed appointment determined that DD has mild to moderate hypermobility in most areas. However, the Dr is also suggesting that it is the cause of her bowel problems too. DD is in pain alot with her joints, can't walk far etc. The dr has told us, yes she will be more tired than other children BUT she does not want to medicalise it and not given us any advice on how to help DD! So where do we go from here??

TheHumanCatapult · 08/07/2011 11:08

hi mummyplum

First ofall they fo not medicate for hypermoblity other than ibruphoen/paracetmol and yes it can affect the bowels as well as the lackof collegen comes into play .Sorry not sure of how your dd bowels are affected

For the biowles if geting lots of problems ask for referal to Gastro .Also ask paed to refer youto physio for advice on excersises and ifneeds splints etc

mummyplum · 08/07/2011 12:00

Sorry that wasn't clear THC - not medication, i am aware that there is no medication. That was not what i meant. The Dr's words were that they do not like "medicalising" HMS or the connective tissue disorders and basically they will not do anything, she will be tired and in pain but most people have some degree of hypermobility, which i know is crap - i have it but know nobody else with the condition. GP is of same viewpoint,no treatment or support. We see a physio who has agreed to help on an unofficial basis. Bowels have been a problem since birth, swinging between constipation & diarrheoa with lots of pain - unknown cause. All joints affected but worse in wrists and ankles, scarring on her face, severe reflux etc etc. Im very frustrated!

TheHumanCatapult · 08/07/2011 12:07

Hmm I would push for Gastro even if it is just a one of so you can discuss things.

Ye sit has took us almost 6 years to get where we are now .And we only got to see a specialist as i persueade d genetics that we see that a definte answer was it EDsor not be usefull .

The best input is physio sadly theres not a lot else , though not sure how old dd is but once school age can ask school nurse about Ot referal espcially wristsetc with affect abilityto write

mummyplum · 08/07/2011 12:50

Yeah shes about to start school :) I knew we would need to see physio, im hoping that the physio will agree to have her at clinic more regularly (we see her every 6 months for her chest). We have a bowel and bladder nurse who said she could arrange a refferal to a gastro, so will see what she comes up with! I did wonder about the OT - she hates drawing for more than 10 minutes as it is, i thought it was boredom but it is really uncomfortable for her. Her legs are always sore especially her ankles so I can imagine that PE will be difficult at times. Thanks for your help!

Signet2012 · 08/07/2011 14:27

Hi
Im 28 and recently diagnosed with hypermobility syndrome after years of being told i had arthirtus/ clicky hips / nothing at all wrong with me / everything wrong with me. lol

I am also TTC and not sure if there is anything I need to be careful about?
I was told by the physiotherapist that i saw briefly ( in the knee replacement clinic because they "had nowhere else I would fit into") She told me that if i got pregnant I would have to be careful because the extra weight would make me in more pain and I could go into rapid labour?

She also said I am likely immune or less sensitive to anesthetic which did kind of make sense as everytime i have had a injection at the dentist it doesnt work in the slightest.

Does anyone know if this is right?

SparkleRainbow · 08/07/2011 17:26

Hi signet, Physio is a good think to have lined up, that and meds is the only thing that will help. The physio is right in some ways in terms of pregnancy. Prof Grahame, a specialist in hypermobility wrote a good little reference guide for EDS and hypermobility in preg I will hunt it out and post a link here later for you. You can get more pain when pregnant, the extra weight gain does put increased pressure on your weight bearing joints, and the relaxin hormone generated in preg can play havok with dislocations and subluxations. I spent much of my 1st preg with a dislocated knee cap! However it still manageable for most people, I have had three dc, many of the mums on here have had multiples of dc, so don't let that out you off. Yoyu are statitsically more likely to dilate quickly and give birth quickly, but again that is about being prepared. There is also a possiblity of membrane rupture in later preg, but this is pretty rare, no-one on here has said they have had that. I had three preg, all different, some increased pain, but I managed without pain meds, just rested as much as possible and was careful n ot to put on too much weight (at the time, wish that was still the case!) I had three quite quick deliveries, but no dramas at all.

20% of Ehlers Danlos Syndrome, Hypermobile type sufferers have little, shortened or no reaction to local anaesthetic, if dental ones haven't worked in the past I guess you are in that category. It will mena that epidurals will probably not work for you, but this can be tested in the back of your hand if you ever need to have syurgery under local anaesthetic. You will need to have ga if it is confirmed, but don't stress about that either it is just important to know either way so drs can plan around it.

What is TTC sorry I may be being dense, been a bit os a stressful day at this end?

Mummyplum it seems to me that you have come up against a paed who is under the mistaken belief that EDS and hypermobility is a thing you can pretend you don't have!!!!! Arghh, but not uncommon. Go back to your gp and ask for a referral to a rheumatologist, and a gastro, your dd needs both. The EDS/hypermobility may be mild, but she still needs a confident dx by a medical professional who is an expert, and a community paed is not this. This is your paed trolling out some rubbish about not wanted to "label" your child, cos they think "labelling" isn't helpful. Ask many mums on here and they will tell you labelling is extremely helpful, it allows you to talk knowledgeable and credibly to schools it gives you a framework for what to expect and it outs you in touch with other parents who are experiencing the same thing. Hypermobility is a recognised medical condition which waxes and wains in the way it affects sufferers, other symptoms seemingly unrelated seem to develop over time, and it can affect different individuals very differently, in that respect it is impossible to generalise a sufferer which surely is the only down side of a label!

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SparkleRainbow · 08/07/2011 17:33

THC I have read up about 6, what a bugger! Are you taking it all in?

Ds still hates the collar, so I am allowing him to use the old style one most of the time as long as he has the other one with him in case of severe pain, it has to be manageable for him too. He had a scary episode today where he became suddenly grey in colour, exhausted and weak on exercise, so we must get his cardio system checked out now. Can I swear? >

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TheHumanCatapult · 08/07/2011 17:37

i would swear to soswear away covers dc ears , are they going to refer Ds ? .we have been refered for cardio now and he will need them regulary for the rest of his life.amongst a load of new appointments seems paed taking serioulsy and we now going to be under London .
but not proffesor Grahams clinicSad as he does not deal with ds sort of eds

mummyplum · 08/07/2011 21:15

Thanks Sparkle and everyone for ur comments. Sparkle this is what I think too - going to have to go in and lay it all down in front of the GP very plainly, they dont seem to be listening at the moment. I know that GOSH doesn't take under 5's for HMS. I have the same condition, had to be in skin traction after severe pain episode which turned out to be a partially dislocated hip. (Don't ask. Well not that any of you need to [hgrin]) DD has alot of symptoms that don't add up but when I see some of the posts on the HMS message board it does seem to make sense!

elliejjtiny · 09/07/2011 14:25

Signet, I have mild hypermobility and dyspraxia and I've got 3 children. DS1 was born in 5.5 hours, DS2 in 1.5 hours and DS3 in 2.25 hours. I had slow labour for ages before that though. My waters broke with no contractions with DS2+3 although I was at term by then, not sure if this is what sparkle was talking about or whether she meant waters breaking prematurely.

Everyone, DS2 has just had his preschool entry plan meeting and he isn't entitled to any extra funding. Not sure whether to be pleased or scared. The HV said that he should get some extra funding but he wasn't at the meeting and didn't send a report. The preschool senco is going to keep an eye on his sitting and if he can't cope with a normal chair they will get his OT to recommend a chair with more support. The preschool staff were all lovely and seemed keen to have him but they didn't seem to have much knowledge of SN. Not sure if he needs more support than that or if I'm just being overprotective. It was quite emotional seeing him playing with the other children. I know I'm being dramatic but there were times when he was a baby when he was so poorly I didn't think we'd get this far.

Signet2012 · 09/07/2011 15:28

Hi thanks for the replies. I was just a bit concerned about what to expect when i fall pregnant, as noone seems to have any idea what HMS even is never mind what it will do, so the info im getting from professionals round here is fragmented.

Thanks everyone

:)

tranquilgardens · 10/07/2011 17:22

Hi, can I join in?

I was dx with hms as were my children a few years back. I have been dx with eds this week by Prof G. I will have to go to the gp and get the children referred now to change their dx if need be.

I have found this thread very helpfull, after spending so long reading it.

Thank you all for sharing information.

SparkleRainbow · 11/07/2011 10:56

Hi Tranquil...what a fab name! Welcome it is nice to see you here. I am glad to hear that Prof Grahame is still working, I still have my sights on my ds going back to see him again, he dx my ds when he was 19months.

Signet I am off to hunt for that eds/pregnancy link for you now....

but don't worry about being pregnant with eds/hypermobility it is fine just need to know what to expect.

I have 3 dc, one with eds. My ds was my first, I niggled for ages with him in early labour, but when I got to hospital at 3 cm dilated I then progressed to fully dilated in less than a hour. With dd2 it took about 3 hours from first niggle to deliver, she was delivered with first three contractions after fully dilated and shot out like a cannon ball Grin, and dd2 was about 5 hours of niggling, then two contractions and out, and she was 9 1/2 lbs and born at home (planned).

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SparkleRainbow · 11/07/2011 11:08

The first link it to a support group website where you can buy a little booklet about pregnancy and eds, not very expensive. have this booklet and took it to medical consulatations when I was pregnant for ignorant medics to read.
www.ehlers-danlos.org/index.php?option=com_content&task=view&id=15&Itemid=10

The second link should reassure you, written by prof grahame, who is one of the best in this field.
www.hypermobility.org/pregnancy.php

The third link is just a good site for getting sensible information, it is based in the US (I think) but they have taken their info from around the world. Remember though this site deals with all forms of EDS, including the ones which are much more serious than hypermobility type.www.ednf.org/index.php?option=com_content&task=view&id=1579&Itemid=88888988

I hope these help.

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SparkleRainbow · 11/07/2011 11:21

Oh Ellie, you are not being overly dramatic at all, it is a big thing when they get to preschool age for any parent, never mind when you have seen them be ill, or suffer or have difficulties as you have.

I would keep a close eye on what is going on at preschool, get the special chair,or a wobble cushion for your ds if it helps, make sure they are aware what to look at for, you are not being fussy or overprotective, you are being a very good mum. These things are better caught early, and supported, so they do not become big issues. If I had realsied how bad affected my ds's writing was, I could have pushed school further earlier, and not been left with his self esteem on the floor, or members of staff in his old school who though he just couldn't do the work, rather than just couldn't record it. You will have a Physical Disabilities Outreach Service, or something similar somewhere in the LA, speak to the SENCo about getting them involved earlier the better. They have been an abolsute godsend to us, and I only found out they existed, by accident, in January of this year, but they have got him into the new school, funding for support, neosmart to write with, self-esteem and gross motor skills support worker, PDSS swimming lessons in a heated pool with a specialist teacher, they are systematically changing my ds' life for the better. Grin

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tranquilitygardens · 11/07/2011 14:25

Hi, someone hacked into my email account, so I have just reregistered again, with a new name.

tranquilitygardens · 11/07/2011 14:31

Sparkle, thanks for the warm welcome, I liked the name also, that is why I used it again, as I lost the last one!

Sparkle, the handwriting thing really knocked my youngest dd's self esteem at school taking her out of class to have extra help with it, it was not great, it was legable though, and the private tutor I had working with the children felt it was unnecessary and damaging dd's self esteem focusing on it so much, she moved school and her never had a handwriting class again and her handwriting is lovely now, much better then when she was being told off about it all the time.

Ariane, I have pm'd you on the old name.

SparkleRainbow · 11/07/2011 17:26

Tranquility, I hope that the hacl hasn't caused too much "damage", it is a complete pain when people like that disrupt so much.

How old are your dc, and how are you doing with your dx and symptoms?

Ariane, I hope you are doing ok, and those antibios have worked, post when you can and let me know how you are. xx

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Signet2012 · 11/07/2011 20:44

Brilliant thanks so much :)

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