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.

He was a very pleasant man, but his opening line was "so ds has ehlers danlos, which type?" Followed by, "right does he dislocate or subluxate joints regularly?" I basically retold him, probably not as eloquently, what I had written on the form, he had no information about ds, no concept of the condition other than that you could have read on wikki as a lay person. Ds class teacher was there, and she was brill, kept going obver all the things they have to do at school in order for ds to be intergrated, aqll the places they wish they had funds or 1 to1 to do more. He tried to examine ds, but ds became hysterical again, and wouldn't cooperate. Not sure what to do next. Wonder whether to go to GP and exaplin what has happened, and ask gp if they can write a letter to dla explaining about how this affects ds's life, and send that as supplementary material. I was left feeling guilty by the whole process, guilty for applying and guilty for not making more adaptations in the family home for ds. What do you think?

sorry to hear dla assessment didnt go well, is it really necessary for them to examine your ds as surely the most that will show is that yes his joints are very hypermobile but not the affect it has on him, to assess that theyd have to spend 24/7 with you as no 2 days are ever the same and diff problems crop up daily i know that from how my 3 suffer. its a shame the dr who saw you couldnt have done a bit more research into it before he saw you and ds.

a letter from your cons or gp would prob be a really good idea as they see your ds regularly and will have a better understanding of how he is affected day to day, with my dd1 and ds their cons wrote a huge letter for each detailing every aspect of day to day living and how it affected them and that seemed to help a lot.

you should not feel guilty at all although i understand the feeling as i delayed claiming for dd for couple of years despite being advised to. you shouldnt feel that way though as you are simply trying to do the best for your ds.

Don't feel guilty and sadly thaw the problem with dla Drs they are no more specialist than gp and they have a tick sheet to fill in.that's a big worry for lots of people

I was fotunate they wrote to ds nursery and his paed for information so if you could ge gp etc to write would help and it was good that his teacher was there to

Sorry to hear the DLA medical didn't go well. I find that a lot of dr's who aren't specialists or who have never met ds2 don't know much about EDS. Definately don't feel guilty, your DS needs the DLA and we only have a breezi chair and a SN buggy so DS2 doesn't have loads of house adaptations either. I find that there are a few critical professionals around but they don't live in the real world. I would definately go to the GP, especially if he/she sees your DS on a fairly regular basis.

Thank you everyone for the support. I am still changing my mind constantly about what to do. I don't know which consultants they asked for info from, I do know they asked someone, at least one person. I might ring his physio tomorrow and see if she was asked, but may be the gp is the way to go. If they didn't already ask the gp, do you think it is too late to get them to write something to send in, or do I need to save that in case I have to appeal. Another question as to whether I have the strength to go to appeal.

appeal a lot are turned down at first see who is up for the fight .Try phoning them and asking them i called and they told me they was waiting to hear back from Rios nursery

Does anyone know how babies with EDS handle birth? I can't find anything on the net but I remember someone saying on here that babies with EDS don't cope with birth very well.

With DS2 my waters broke and nothing happened (apparantly this is common with EDS). He was born after 90 mins of established labour. He had heartbeat decelerations at one point during contractions and he was blue at birth with an apgar score of 5. He was fine after some oxygen and suction but I wonder if I'd been in labour for longer or if I'd been induced then he would have been worse off.

DC3 is due tomorrow and they are already talking about induction if I go overdue. Both boys were born at last minute before induction so I probably have nothing to worry about.

I'm not sure what the chances of this baby having EDS is either. DH, I and DS1 have hypermobility but I don't think it counts as EDS because we don't have it bad enough. DH wears boots with insoles to stop him spraining his ankles. DS and I are just bendy, clumsy and were late walkers.

DS2 is in a different league. He doesn't walk at all at 2.5 and he is so floppy and flexible. Does anyone have any experiences or info they could share?

I dilated quickly with my ds, he was not distressed by this. His heart was stable throughout. It took me a long time to push him out, but that was about my contractions not his eds. He had an apgar of 9 when he was born and was 7lbs 14 oz at two weeks early. My dd's I again dilated quickly dd1 (7 14oz) shot out after two contrations like a lamb on all creatures great and small, dd2 needed a bit more work, three contractions but she was 9lb 8oz! Neither of my girls have eds.

EDS is autosomal dominant which means a 50/50 chance of getting it, imagine I have one dodgy gene and one good. If I give the dodgy gene they get eds no matter what my dh out into the mix. If your dh has eds too the chances are as follow (gg = good gene dg=dodgy gene)

you gg dh gg = ds3 NO eds
you dg dh gg = ds3 YES eds
you gg dh dg = ds3 YES eds
you dg dh dg = ds3 YES eds

so 75% chance. But remember eds is not the same for everyone, many people have benign joint hypermobility, with few or no ill effects and lead completely normal lifes, many also have some aches and pains, but nothing major at all (my sister for instance just has some knee pain, which she started with in her 30's, it doesn't stop her at all, in fact most of the time she doesn't notice it) very few people actually develop the issues which we all talk about on here, and that your ds2 has. Try not to worry, enjoy your baby, I am sure your labour will be fine. Good luck and I hope that helped.

Hmm ok int lot are slightly unusrual in that were all extremley hypermobile 7-9 on the Beigjton score

Ds1 gets hand ache when writing ,ds2 very flexiabld same as ds1 but not to bad .Dd yet agin shows up in handwriting but she's getting help now at 7 so making noticable difference

Ds3 well whole differnt kettle of fish he walked at 3 ish uses afos and wheelchair when walks IRS more like a toddler stumble .He also struggles holiding pencil but were working hard and seeing progress but there looking to see if underlying chromsome condtion he also has sever oral dyspraxia but that's complicated by his low muscle tone
his problems were obvious to me from birth took bit longer for proffesionals to agree that he was more than just lazy

As for births all was ok bar Dd had major problems ended in special care but that's down to a differnt condtion

i ended up having c sect with all 3 due to fetal distress with dd1 and i didnt dilate despite induction, with ds i had placenta accreta and with dd2 i was told i had to have another section, she was born with a dislocated toe and has since been diagnosed with eds as well.

I have another saga for you. I visited a different primary school this morning who will be better able to cope with ds's needs. They are offically full but I was told that as they were the designated school in the area for children with physical disabilities all I would need to do is contact the lea admissions department explain, they would contact the head and then he could admit ds. I did this and the school admission officer said "Well you can apply, and supply doctors letter, but you won't get in because physical disabiliy is pretty far down our list, we don't really care about physical disability" I then ponited out that only acring about educational needs was discrimination, and he back tracked enough to say it is not discrimination yet because you have applied and been refused yet!" Yep you read it here......that is not discrimination and surprise surprise they don't care that ds s
catchment school environment puts his life in danger every day.

"we dont really care about physical disability" i cant believe somebody said that.truly shocking.

i had similar problem getting dd1 into suitable school, very very long story had to get a solicitor in the end and take lea to court after failed appeals over the school place it was a nightmare but i won am praying now that ds gets his place there for sep now (ive moved so am relying on the sibling link).

That is terrible, Sparkle.
Sadly not dissimilar to the attitude of our council/LHA here though, whilst provision for people with ASD might be bad elsewhere in the country it seems to be OK here. There doesn't seem to be much for people with physical disabilities though, unless I'm missing something.

My dc's both go to the local (small) church school, they were very lucky to get places as we don't go to the church. I knew dd wouldn't cope at a larger school, and even this one has its moments.

Btw, school rang me at around 11am on the day they went back after the hols. Someone had tripped on their shoelace and crashed into dd's elbow, which she had subluxed a few days before. I had to collect dd and took her to hospital, nothing broken but lots of fluid around her elbow.

I have my fingers crossed for you, this is a nightmare. I am so angry. I want him to go to a good school that is suitable to meet his needs, it seems I can have a good school not suitable, a poor school not suitable (current option) but I can not have a good school that is suitable, and what is more the admissions guy said they had no record of disabled access schools to allow parental choice or information, but I could apply to the designated disabled school if I wanted, at which point I felt like screaming back......that is the one I want to apply for but it is full!

ARGHHHHHHHHHHHH

Thank you for listening

yes much more provision for asd/adhd where iam i applied for transport to school for dd1 as i dont drive and we were turned down, however next door but one to me has 2 ds both have adhd they get taken every morn by lea transport and she has a car!! obviously i dont know all their problems so im not judging maybe they were lucky when they applied but i do geta twinge of jealousy when i see them running up and down the street or on their bikes as i wonder will my ds ever get the chance to play like that and sadly i very much doubt it short of a miracle.

everything is very unfair

They just don't get EDS and they never will if they are not prepared to listen to us and talk to each other, and I include doctors, physios, teachers, "officials" in that "they".

It is unfair, and i don't know how to stop feeling desperate about it.

i really struggled with the school place situation, you should consider getting advice from a solicitor, my lea had to change their admission rules because of my daughters case, they wanted her to go to a school with lots of stairs/steps etc and told me as she wasnt statemented nobody would help her up and down the stairs so i asked for a school completely on the flat (it had been my first choice) they said no absolutely not as medical cond could only be considered for a place at the school nearest my then home even if said school was not suitable!!

in the end they gave her a place and changed their rules to say a medical condition could only be considered for a place at school nearest to the childs home except in wholly exceptional circumstances.

it took months of stress but was worth it i just hope that rule change may have helped other parents in similar situations

I think that may well be what we have to do. I have written to ds's existing head and warned him or my intentions to look for provision elsewhere. He has written back agreeing to meet me and he sounds upset that I am considering taking the dc elsewhere, but I have to look at the physical capabilities of the building to accommodate ds as well as the lackings of a few members of staff, which you know about. Even if there was money to change school buildings, which there isn't, it takes a long time to change small minded people's attitudes, as we well know.

so sorry you have to go through this it is really hard, all you want is somewhere safe and suitable for them to learn and sometimes even thats hard to come by, the lea seem to have odd rules/attitudes to things like this and they cant seem to work out what to do or say so just stick to narrow minded rules and opinions. its worth the fight though it really is i know when i send dd to school every day that they understand what her problems are and that shes safe as she can be there. i hope you can get the same for your ds you deserve some luck

iam having a terrible day, have managed to pull all the muscles around (or are they inbetween ribs?) its agony, went to gp yesterday as i really thought i had something terrible wrong with me when she pressed whwere it hurts my ribs were making a horrible grinding snappy noise and it was agony, im really low, i cant rest as when i lie down it hurts even more. i wish things were different i can almost manage when i feel well but when things like this happen i go to pieces. dd2 has her scan today to check her hernia so have to get myself motivated, somehow

that is terrible about the LEA, Sparkle, but not surprising

we had to go to appeal to get dd into school with lifts- LEA refused our application because our preferred school (the only local one with wheelchair access) was one that was not down on their list as "suitable for disabled children" and therefore they did not think dd could really be disabled, so allocated a school with not disabled access at all. When we inquired into this it turned out the corridors of our preferred school were not adapted for visually impaired. So any child who could cope with this school, was clearly not disabled... Because all disabled children are the same as one another...

at least it made for a good appeals speech

Deepbreath - I missed you post. The school your dc attend sounds just like to one i want to get my ds into, much smaller easer to move around, plus wheelchair access, no hills or slopes or steps or public highway running through the two sites like we have at present.

How is your dd? Has the fluid started to go down, so painful, and typical that that is the one that gets bumped!

Ariane - how are you doing? It sounds very sore. I hope the henia scan goes ok, what are they looking at doing for her?

Cory I am making notes for a good appeals speech. The fight is now on. I have written the application form and supporting info, the GP is one side and going to do her bit. have warned the head of ds's current school, the head of disabled access school is being supportive, I have contacted the SEN Assessment team and they are horrified and sending out a physical outreach team to suport ds and add weight to my complaint, and I am beginning to write my complaint to the Head of Educational Services. I want someone to stand in front of me and tell me that they don't care about disabled children............! Then we will see where we get to. I am running on adrenolin now!

And after that it will be fighting the DLA.

iam ok now i think i just had one of those mornings-it was either have a complete breakdown or have a good cry and then just get on with it!

scan didnt go great, she has a hernia its a loop of her bowel that has come through and they have said they will have to keep an eye on it in case it gets trapped, theyve told me to watch out for symptoms like suddenly vomiting a lot, pain when going to loo or not going at all so its just something else for me to worry about. ds has a uti and is very sore and feeling sorry for himself so it is yet another rubbish week for me.dd1 due back at school tomorrow after being terribly ill with chest infection and on lots of anti b so im hoping maybe things will start to get a teeny bit better.

im in pain but trying to just get on with everything, i dont know what else to do

Big hugs, I am sorry it is not such good news for her. I am sending you lots of good thoughts