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.

Misdee - Most athetes who excel in a field which requires some degree of flexibilty have hypermobility, without pain and with few complications. Colin Jackson must have had hypermobile hips to get over those high hurdles like that! I did athletics when I was young, until I reached 16, when the pain started. The doctors now say I did a lot of damage to my knees.
I think it is a balance, both the teacher and your dd need to be aware of limitations and potential issues, but equally she may be fine. Sorry am not much help.

rtb4 - I have got some questions about bowel and bladder control too, am thinking I will have to trawl the net again. I am wondering whether ds's incontinence has to be spinal related or whether it could be eds, am aware my sister, who also has it but much more mildly, only affecting her knees intermittently, has never been able to tell if her need to go to the toilet is for one thing or the other, or both.

Just found the halloween smileys and wanted to send you all a [hgrin]

Baby has a vomiting bug, am on third load of washing today, Ofsted in ds's and dd1's school - I expresssed my opinion forcefully on questionnaire. Feel I need another [hgrin]

sparkel was the reg i saw that aleerted me to bowel issues came abput becuase i was vomiting while in and they though had bowel obstruction cue xray which showed dilated bowel so had emergenct Ct scan and turned out bowel not obstructed ju7st floppy due to the Eds .

Reg explained Eds suffers often can be constipated or the other way and suffer with incontinece

we have all had bowel trouble here-dd was constantly constipated as a toddler-would scream and scream, hold on for days and used to be in agony, she went through a lot of lactulose and despite having a healthy diet it didnt help-lots of tummy aches too.

ds gets tummy pain a lot and seems to always suddenly need the toilet and has to go right away, he doesnt seem to know he has to go, suddenly its just an urgent rush to bathroom, he never asks to go to do either i have to always ask him he doesnt seem to get the message.

i get a lot of nasty tummy pain but i had never really put any of our troubles with all this down to eds, i thought it was due to allergies or that i had ibs as sometimes my pain is really quite bad almost like my intestines are being squeezed and pulled its a horrible sensation, maybe it is the eds and i hadnt realised.

just seems to be another uncomfy thing to put up with

sparkle-hope the baby is better

Baby is on the mend, but got called up to school yesterday, as they had to call an ambulance. Ds fell off his stool in ICT, had mid back pain, neck pain and neurology symptoms. Spent over 2 hours sratpped to back board before a&e found enough qualified people to log roll him onto bed! [hangry]

By the time they examined him, 3 hours after accident, they symptoms had started to fade. He has had them since, but I have't bothered with the drs, what is the point. I have just put his collar on and monitored him. They are apparently "chasing" Mr Marks Ortho surgeon in Birm to accept ds's referral.

Got the dla forms today, hae had my first cry over the forms (there will be more) can fill in all the sections from point of view of average week, but think I will do it from this week and last week, as have no-one can tell me if it will get better than this for him. For the supporting statement from someone else, should I ask the GP, physio, or my first reaction the TA at school who is his main carer, helps me set up the school systems, went to hospitak with him yesterday in the ambulance etc. What do you think?

A and E informally diagnosed him with neurally mediated hypotension yesterday, not that they are going to do anything, but that would definitely explain the sweating, going woozy in a hot environment, feeling dizzy etc.

Glad babys doing better sparkle but oh nk on ds can not believe took them that long to check ds out hmm infact anything luke my local I can

Ds had sppoinment with orthtics today and scarey how badly his walking has detoriated in few weeks of not wearing splints ,Nhs team shut physio up by saying that private guy was right and that ds should not been left the 3 months gad to wait because nhs physio wanted nhs referal opion

sadly she admitted on nhs ds could not be case fir splints for 3-4 months then another 8-10 weeks after to collect so with her support and understanding I'm going back to private company another £650 to find

But she warned me as ds grows walking going to get harder as hid balance more of he is already walking in a crouched leg postion

And been warned his core stablity probably won't improve I'm going yo demand that referal to gosh though been warned since ds has other issues we might not get seen by him

Sparkle do the dla it helps

Have started filling in the dla. Have approached one of his classteachers who has experience of filling them in, I went to ask her if she would be the named person in section 25 (?), thought she has a good handle on what it means for ds. She said of course, and then gave me a big hug, and said she was so sorry, that meant so much to me cos sometimes I feel like we are just an inconvienience for certain members of staff. She is going to sit down with me after half term and go through the form, make sure we have covered everything. I spoke with gp too today about it, he supported me but said I should write it from point of view of averages, bearing in mind good days can be really good, but still have to control falling and dislocation risks,(ie. constant supervision outside etc) and bad days are complete and total disability - bed ridden etc...that is quite a challenge! As for the questions about how long I am up with him in the night.....well every night is different. Still have begun to cobble something together! I have health plan and risk assessment from school, thought I could include a diary of the last two weeks as "evidence" under the additional info section, am I missing anything else? You are my dla gurus (hgrin)
Trying to be positive.
Can you claim the £650 back from the NHS as they are not able to provide what they have identifies as essential equipment within a reasonable time frame? They palm people off the private hospitals to cut down waiting lists! Not sure who you would ask.
I think a referral to gosh is the way to go, you are rapidily exhausting everone's expertise at your local trust.

no becuase appliances dont come under same rulling why you have people waiting 3 months for urgent wheelchair problems .

Truth the casting is done by a big company the moulds then mad eup by anothe rthen fitted by someone else .and often ther badly made

I rather pay for it and no he has the right stuff .Ye stoday she said hes far beyond her scope even the phsyio could not believe the distance orthitcs had some experiance and warned me ds is going to get worse especialy as not sure what else is going on

theres talk of maybing alycra suit so want to talk to gosh if i can

God you must be so worried. It is so frustrating that he can't be bumped up a waiting list as he is at an important developmental stage, bit if they are so badly made on thr NHS it sounds like you will be better with private ones.

Who are you thinking will be the best to refer you to gosh?

hmm going to chase genetics tomorrow and maybe once physio reporte4d back to paed after todays meeting talk to her

and truth i been arguing on the benfit cut thread most the night was already bad mood so decided to go stomp over there on a few nasty posters

Had I known I would have joined you. Sat with a good friend with experience of sen children today, and went through the dla form with her,cried and said the whole process made me feel like a sponger on the state...she was so supportive, but nasty posters who have no idea what they are talking about can be so damaging! [hangry]

Did you have any success with genetics yesterday?

We have had a rubbish two weeks now, so much pain, urinary incontinence, depression for ds, hospitalisation.... My dh who has clinical depression is on the verge of another breakdown I think, certainly is on a downward spiral, and dd1 has started complaining of hip pain. She dislocated her hip last weekend I think, by lifting up her foot to smell it! Have to smile at that [hsmile], ds's paed said get gp to refer her too, thought she was fine, maybe she is.

Tell me what does a lycra suit do for your ds?

Hi the Lycra suit can help improve core stablity also depending on style can help with joint stablity to

It's used very sucessfully for dc with cp also seen it used on dc with ds

but know of a child with eds that has one and have spike to other parents of dc with cp and they said after a while wearing the core stablity improoved so much no longer need to wear and ds core stablity affets him a lot

But yet again our physio is crap so knows nothing !! Won't refer so it's all on if can get referal ,did talk to genetics and there refering ds but warned me from conversations they had proffesor Graham is likely turn him down for clinic as he has to many other issued going on and not pure EDS which is what he prefers

So ds is going be in no mans land get no help because he was unlucky to have other problems I cried after that phonecall ;(

Hi, a child from Hinckley that has EDS got a charity donation from the Lions (I think) to buy a lycra suit. The story was on the news, as the parents were disgusted that there is equipment out there that can really make a difference but their local NHS won't pay for it. In some areas, kids with CP can get them. Again, it seems to be because so little is known about connective tissue disorders.

The article said that the suits last about a year or so, depending on growth. The little girl that had one went from being unable to weight bear to being able to walk - it really did make that much difference. The lycra is so strong that it prevents all the subluxes especially around the hips and makes the joints work properly.

Story here

yeha i know her from another baord differnac eis she has glsh backing her and a decent phsyio , where ours is crap she did not even know what eds is and felt Rio did not need splints boots be better , but intresting the orthics disagrred with her when saw him walking so did feel like going told ya so

hello, have not been on here for a while as have been having awful time again- ds back has been really bad he spent half the day yest crying and screaming in pain iam at my wits end it took ages to help him, nurofen,calpol, rubbing his back,lying him down and in the end he wanted to just curl up on his front with pillows under his tummy.it has been a hard week.

dd legs are really painful at mo and she has a chest infection and i have what i think is sciatica (numb/pins and needles back and shooting pain down leg) and my arm hurts,went to physio sat and he pulled my elbow around,it made horrible clicking/crunching sound hurt like hell and i very embarrasingly nearly threw up as the sensation was the most horrible thing ever!

im hoping this week is bit better couldnt cope with a bad one again im just so exhausted and hate to see kids in pain so much

had bad night (again) am going to try my best today to get out for a bit of fresh air depending on how dd is and if we can manage to get anywhere,even if its just to the shop to get a newspaper i just need to get out as am spending every day stuck in moping about.

Sorry your having a bad week Ariane.Have you talked to drs about differ5nt pain options there is codeine liquid for when its really bad also another one that is used is Gabapentin have heard good reports on this

Worth asking becuase nowadays no one should be in pain with so many drug options

ug on the leg ache mind google snapping hip thats causes sciatia like pain also worth thought if that could be some cause of ds pain as it can go upwards in the back or down in the leg

And yes i get stir crazy if indoors to long as well

The news here is proffesor Graham wont take referal to ds as theres to much going on with him and its not just Eds so yet again were left in nomans land without any help

No one wants to take responsiablity for ds as hes a complicated little boy there words and yet with no medical training im meant to just get on and deal with it .

We did learn that after all the hassle of waiting and the physio sayiing that ds probably doe snot need afos etc ignore private you must see ours i agreed and she was like hmm can see why they been prescibed and yes he is right but we cant do on nhs for long time so with her understanding were back to private guy and 2 fingers to the physio who luckily enough was in the room to hear it

i dont know what has happened in the last couple of weeks i just feel worse than ever i think things started to go rapidly downhill when i was pg with dd2 (she is 1 in nov) i think my body just cant cope anymore and it worries me as it isnt just myself i have to look after.

doesnt help being on my own and having nobody to help with the sleepless nights etc etc i feel like there are not enough hours in the day and everything takes longer to do when im in pain.i have regular physio but doesnt seem to work much, he does ultrasound on my arm and tells me to try and rest, the exercises made it worse but have to keep trying i guess.

Worst of all i got letter from physio the other day-copy of ds review she had put in it that him being in a buggy still was making his problems worse and that i should stop using it with immediate effect????

how the hell do i then manage with a child who never walks more than a few steps without falling and dislocating thumbs/fingers, screams in agony with back pain, gets knackered by lunchtime every day and i dont drive so basically i would never get anywhere and i cant carry him if he gets unwell and i havnt got his buggy, i was so angry.

sorry to hear you couldnt get ref to prof grahame, i hope you manage to sort something else out, such a struggle isnt it

yeah we had this at one stage saying if allowed ds to use his wheelchair he will neve rbuild up strenth or his core muscles .im like wtf am i meant to do never go out then !!becuase at 5 i sure cant carry him

Thopugh she got told to shut it also got rubbished at by the orthtics who knew something about Eds

yeah im sp to and i dont have half as much pain as you and my dc are older

yes it was he so called great man himself who has refused ds while acknowledging that for ds it is a very major problem and will carry on being so but he sorry wtf sorry going to help not but becuase ds is to comlex he can not help baqsically does not wnat to help or even try

ds has exercises to try and help core muscles but in all honestly making him walk just results in dislocations and then he doesnt do physio for a while till soreness and swelling has gone down and he gets such a bad back id rather what little exercise he gets is physio in a safe environment where he can strengthen up a bit (hopefully) without ending up in a +e with fingers flapping about!

i do get help from my ex when he can and my mum and sis are brilliant too but at end of day they all have to go home and its always the nights that are the hardest, i really need my rest and sleep but its impossible, thats life though i guess.

theres a national eds specialist centre at my local hosp northwick park in harrow, maybe they would see you if you could get ref, am not sure how ref works for there we only got passed onto them as clinic we used to go to was closed and dd2 needs formal dx even though i know she def has eds have to get it done officially. might be worth a try otherwise you seem to be just getting passed around when you need the help right away.

Ty will try though am fed up with the well he's a complicated dc we can't really help you as he dies not fit our clinics

am tired if fighting trying to find where he fits instead of cordinating clinics and drs and services and no one talking to each other or pass the buck

Am waiting really in see what genetics come back with the chromosome stuff then might get somewhere

and yes were struggling with physio ge us just to tired after school pick up is 7,30 home about 4,15 he comes in sits down 2o mins so computer while I cook dinner then has dinner,then bath then he us do tired it's cuddles and story and bed

I have two boys who both have hypermobility (not sure if it's the same as EDS). My husband and I have it too. Our 4 year old also has aspergers/asd and our 2 year old has hypotonia. Currently trying to potty train 4 year old with not much success but not sure if this is because of the aspergers/asd or the hypermobility. DH wasn't fully "trained" until his teens so I'm thinking there could be a long road of wet pants and washing sofa cushions ahead of us.