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.

it took about a month for family fund to sort my claim out, it was meant to be that they dealt directly with bsm and i would get 45 hrs of lessons plus 2 theory tests and 2 practical tests paid for, but they had a prob with bsm so they now do a package thing where theres package a-d .

first you get pack a which is £400 paid into your account and you have to find your own instuctor, take 400 worth of lessons and your theory and then after that the insructor has to write to them saying how many more lessons you need and the cost then they pay for it.following that if you need further lessons they pay for that and finally they pay for the practical test.

Iam so glad i got it as its too expensive otherwise and ive never had the money to learn despite really needing to, i just hope it makes a difference to my life as the way i feel now iam struggling every day,tired and tearful and its all too much for me.im hoping that if i can drive it might make the mornings a bit easier as currently iam up so early to do dd and ds physio and get them to school that im exhausted and even if it gave me an extra 20 mins at home in the morning id be happy!

i really hope you get the driving lessons too sounds like you desperately need it as well.

My appt at eds clinic was really long i had to take photos too and they took a lot of us when we were there as well, if you need help on the day if you have all your dcs with you let me know id be happy to sit in waiting room with any of them if you and ds have the biopsies as ours took 20mins each to do and my ex was there so he kept my dcs outside while they were doing it.anything i can do to help id be happy to its no trouble as im so near to the hospital anyway.

Ok thats alright as i have found a good instructor and was thinking about booking some lessons with him but did not want to if then i had to use a set instructor .So means once my replacement provisonal arrives I can get going.and already have the car and lol walking past it to walk to bus stop is really annoying
.

I have had one award from social fund before about 2 years or so ago .So heres hoping .

thank you at the most with have dd and ds3 with me .im being mean the others will be at school/collage there almost 17 and ds2 is 14
.My mum will stay the night before at mine and me and ds3 and maybe dd will head up into London .

Be intrested in the physio element we have no set physio to do at all .We see ours about every 4 months and she spends hr with us and says take him swimming sofat play encourage walking and lol thats sum toatl of physio.

There will be no way to fit in before school .Ds is picked up by 7.30 home about 4.30 but he has tea and is wiped out needs go to bed.Am hoping if we get pd school then i know they will do with him

hmm thinking on that i shall leave Dd here and ds can drop her into school if mum has to leave early and bless ds3 is so easy going he is used to being dragged around by me .

But if you want to meet for a cuppa day before or after give us a yell .We are staying here

www.premierinn.com/en/hotel/HARTRA/london-harrow

Now I am jealous that you guys can meet up Not really, sounds great if it can work. I know the 3rd May sounds like a long way way, but it is just the last hurdle of this particular fight for you.

Ariane ds gets cramp all the time, think it is probably condition related, not sure that is what you want to hear though.....sorry.

Ds has gone all pale and faint after school. Don't know what this is all about. He looks awful.

sparkle whwere abouts are you?.will be on yahoo later if prefer say on there

In staffs, will look nfor you later on yahoo if dc let me. [harassed emoticon needed]

Good luck with the appointment and driving lessons. I really should pluck up the courage to learn but I'm scared of running someone over, think I watch too much casualty!

DS2 has been so tired just lately since he has been walking. He doesn't go all pale and sleepy though, he has a mega strop and flings himself backwards so that if I'm carrying him I feel like I'm going to drop him. But he stuck his card with his photo on the wall when he went into preschool after only being asked once which I was quite impressed by .

ellie

its reache dpoint where i really need to drive .We are 45 mintes to a hour walk each way from nearest shop .

But i know it will amke such a differance .Had case where ds was ill at school as he got there was sick.I had to go get him and its 3 and half hrs each way on public transport by car its 40 mins max .So thats the final push plus i do that trip on weds to his school for 25 minute signing then collect him and come home same way so 7 hours of travelling im sick of it

and well done your ds2 and ye si recognis ethe stroppy tired thing to

hello, hope everybody is ok today

we are off to see the gp this morning as dd2 has been in agony with her feet/legs and wont stop screaming, she also has got a problem with her jaw and keeps dislocating/subluxing it, but on purpose, it is quite horrible to see but doesnt seem to hurt her at all. She just keeps doing it like shes learnt a new trick and i have to tell her 'no, dont do that' which then makes her cry and i feel awful but iam terrified she will do it and not be able to get it back in again and then i will have numerous hosp trips.Shes only 16mths so i dont know what to do as i cant ask her to not do it. It really makes me feel sick though, the noise it makes and how it looks is just horrendous i cant believe that it doesnt seem to hurt her at all

Hope the appointment went ok today ariane. It is weird how some disloactions hurt and others don't isn't it, I have noticed it with ds and with me too.

Ds is miserable at the moment, lots of neck pain again, he has had bearly three weeks without any, and I think he really got used to it.

Hi

Hope dd is feeling better soon Ariane and yes i can do the same with my jaw as well and hopefully little madam will soon get fed up of doing it

Sparkel sorry to hear ds is not doing well .

Think something is in the air we collected ds new dafos last week and within hr had to call arrnage take them back as every time he walked they was cutting into his feet and of course she could not look atthem to this week due to politics as she sonly in our area once a week .But she has now sent them back to company that made them and we now have to wait howe long well probbaky a month

Ds is having horrendus problems this week several falls at school including one horrendus one yesterday which has left him with a big egg cut knees , arms and hands and a scrape all up his face .And has been very tired to .Was warned when he grew he could get worse .Was thinking more when he is a teen but seems its getting worse now :( which is not going to help with trying not to use the wheelchair

on your behalf re afos. grtb4. How is ds this week?

My ds issues get signifcantly worse in growth spurts, so maybe it will settle a bit for your ds, and not stay at this level. I hope so.

No progress here apart from LA have got themselves in a major bind, lying to my MP and getting caught in it. I have given them 1 week from yesterday decide how they are going to meet ds' educational needs before I go to the press etc. Think they might actually be frightened now, have had first apology and a promise for one to one support to be in asap. Not holding breath. Still no ortho surgeon, no response from Rheumatologists and have started complaint now with PALS and PCT. God i despair I truely do, and I am so lonely.

sparkle iam so sorry you are having such a terribly hard time, it must be so frustrating. I wish i could do something to help, i really understand how lonely you must be as i get lonely everyday too.

hopefully now that the la have apologised things will start moving quickly for your ds in terms of his schooling and support that he needs.You must be exhausted though with everything you have been going through to try and get it sorted out.I really really hope things start to improve for you.It is shocking that you still have not had an appt with rheumatologist yet and def the right thing to do complaining to PALS and PCT. It seems to me that you cant get anything unless you fight for it which is so unfair and such hard, draining work especially when you have an unwell child and have enough on your plate already. I remember when i had to fight to get dd1 into the right school it was an absolute nightmare and took hours of work preparing statements, forms for a solicitor, getting doctors letters etc when the les could have and should have just given her a place but they were stubborn and unfair.

I wish you lived near to me, if you did id be round to see you with chocolate biscuits, cake and a shoulder to cry on. please dont be lonely i will try to get on the computer tomorrow to see if you are ok, take care

sorry should have said the lea not les !

same here sparkle your at top of list when learn to drive tea coffee wine and cake lots of .And yes i get the loenly im tired of forever fighting to get Ds help

.Then getting critscised by the disabled sw.Apparently ds should not see himself as disabled ,hmm cant walk properley cant run , cant talk , cant hold a pen , struggles with using cultery , has special seating .Wears Splints ...Am going to put in writing and persent with a wtf is he then if he is not disabled .Becuase i think disabled tag is better than people thinking he is just slow or lazy

.Had letter from family fund asking which package have gone for A .I am presuming that to mean that i will get it .crosses everything.

Confirmed in writing appointment on the 3rd of May at Eds clinic now just to hope pead doe snot take in her head to cancel this one .Am thinking not since its come as Gentics to the Eds gentics and includes me .Though she cancelled the Gentics at addnebrooks and went with one she had arranged from Gosh.

But she even trys to cancel I will kick up such a stink .

Sparkel here is hoping that they finally get their fingers out and provide ds with some proper help

Here i am looking at schools for junior placements and since speech units at junior level spend time in the Mainstream a lot .finally it is looking likey that the physical and neurological team are going to start getting involved becuase finally at last we have lost the Global delayed devlopment tag it is now accepted His Ld are caused by either his speech problems or his very real physical problems ..So am hoping we may get some help .though yet to convince bloddy disablity Sw of it all .We have a caf on the 15th which im going to put all in writing .Am still waiting for the Ep report but do know she scored him non verbal as within normal cognitive devlopmetal level and agrees any delays are cuased by speech and physical .

We have his statement review on the 16th of May which be intresting

I have fired off another rlound of emails reminding them they have until Monday 4th April to come up with a solution.

I have also fired a round of emails at rheumatologists and PALs, but nothing back from them yet.

Battle, battle, battle.

PDSS came for a home visit this morning they are very pleased with how he has progressed with the neosmart, but she said she thinks from watching him that ds is dyspraxic as well, physically rather than the cognitive elements. She is going to talk to a colleague about assessing him, and trial out some special seating for him, which would be good especially if it stops him falling off chairs!

I don't think your paed can cancel the appointment when she hasn't requested it, surely? Then again, nothing surprises me these days.

Thank you for your kind thoughts and words.
x

Be good if you can get better seating .Ot provide ours the nhs Ot does the school one and ss does the home stuff.

Did you give them a set time to respond to your emails ?.

I checked and becuase the appoinments for me as well no they can not.

I have bad hip and back today and despite codeine i want to cry .Ds1 has been really good though am so glad friday is a non collage day

The meeting I demanded to have on monday of this week I gave them a deadline of Monday next week. When I emailed them today to prod them along, I reminded them they had until end of the day on Monday 4th April.

We have a pct LA meeting at school on Tuesday next week, so that will be very interesting.

What has set your hip and back off today grtb4? The change of weather I think has affected me this week. It is manageable but I have quite extreme hip pain, and it has transferred into my pelvis too.

How are you doing ariane?

The orthotics are going to try a miami collar for ds now, but as with everything it has to be ordered in, then fitted. It looks a monster of a thing but hopefully it is more adjustable as so will fit him better, he is so tall but skinny that is the problem, there is just nothing to his neck, he keeps tightening the collar, tighter and tighter to try and feel the support.

Just for interest here is the link www.supports4u.com/miamij/miamij.htm

Hello everyone, I've not been on this thread for ages, but have read back through a few pages...apologies if this has been covered and I have missed it!

I wanted to ask if any of your children have had night time splints to help with pain overnight? DS's new physio has ordered some in for him to try, they are from toes to above the knee, made from kind of 'stiff foam' with Velcro straps on the fronts. Just wondering if anyone has tried these, and do they make a difference, because DS is getting his hopes up thinking it will be a miracle cure :( (haven't got them yet).
Also, has anyones children got/tried ring splints? The physio has told me all three children would benefit from these as their fingers are so flexible and they get a lot of pain and fatigue from writing etc. and DS in particular is having trouble learning guitar.

Also, wanted to add that DS gets extremely grumpy when he is exhausted by HMS symptoms and then goes pale and floppy, and literally cannot walk without falling over every other step.

For example, he has done too much this week, soft play last Friday with friends, pottering in the garden and riding his bike (well, falling off more than riding!)at the weekend for a couple of hours, with breaks, shopping Monday only quick visit to two shops, and by the time he had a guitar lesson Tuesday morning he was shattered. He has been collapsing for no reason, not tripping over, but just falling down. He has been very wobbly on his feet and keeps tripping over and hurting himself...more bruises and scrapes than usual and dreadful ankle pain. Also he has had far more severe stomach ache than usual this week, not sure why I've been up since 5am today with him in pain :(
And, the 'experts' think I should be restricting his use of the wheelchair and making him do more [hmmm]

My ds's physio doesn't want to provide splints for night time as she says it is better that they move the joints and gently build muscle as they move in this relaxed position. Ds has developed problems with fingers subluxing, so she did give us finger tubigrips, I have had to sew them to be smaller as they were too big, but they are two fingers sewn together to help keep fingers more rigid buit not completely splinted. They do seem to have helped. He is mainly dislocating his fingers at night though, rather than during the day. He is just knackered during the day.

When is he knackered he falls, I do this too, it is like my legs just disappear from under me, think it is all part of EDS/HMS

hi

Ds does have splints for night and another set for in the day ( though waiting on his new ones )Mrsvictor do we have the same specialists I get this of his lot about the wheelchair yet ds had 4 serious falls last week at school and even they are now worried .

Were of to see Dr pope in May for dx of Eds we do have one or hypermoblity syndrome .We are just reaching stage of splints for his arms for day time use and were looking at ways of holding a pen strapped to them

Hi all,

Sorry you all seem to be having such a difficult time. I hope that things get sorted out soon - I have been trying to keep up with the thread but please excuse my poor addled brain. Dd being sore, overtired and hysterical the last 2 days hasn't helped. I am really interested in the splinting mentioned above, though. Dd only has DAFO's atm.

If any of you are on Facebook, there are several HMS/EDS/LDS/Marfan groups on there. One new-ish one is a closed group, so you have to be invited to join just to keep away any problems, but there are around 56 members and are planning a meet up especially for families that are affected by connective tissue disorders.

Thanks for the replies regarding splinting. I think they are giving DS night time splints because they just don't know what else to do. He is 7 now and has been waking every single night with pain since he was 9 months. So, with the girls waking 3/4 nights a week as well, I am shattered all the time. Previous physio didn't have any other kids with HMS causing pain, more as an additional flexibility problem on top of another diagnosis. I think that is why it has taken me sooo long to get anywhere, the kids only have HMS. New physio does have others with HMS but has admitted that my three are the worst she sees, and she just doesn't know what to to do with them. I think that should back up my requesting an appointment at GOSH, but so far I have always been refused. OT's attitude is go home and get on with it, stop making a fuss. DD2 is having terrible problems with her ankles, they have been promising me an appointment with the podiatrist for over a year now, still haven't got one. No-one answers my calls, no-one does what they say they will, I am just so sick of fighting and chasing all the time. Sorry for the rant, just so tired and have spent Thursday and Friday chasing appointments and still not got anywhere.

DD1 and DS have wrist splints for writing, along with pencil grips and writing slopes I have had to buy them. This does help the pain in their wrists, but not with their fingers and elbows, and they find writing/drawing/colouring so tiring.

goingroundthebend4 do the splints help your DS with pain? Physio says that they will slightly stretch his joints, so should help. I'm not so sure.