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.

Hope you're all OK?

That's good news at last, grtb4

Sparkle, I put something on your other post. Sorry they're being so difficult.

Ariane, hope the rheumy appt goes OK.

Ellie, I went to the Kidz in the Middle exhibition and in one of the brochures I was given, there are 2 supportive liners for buggies, Seat 2 Go and Back 2 Go - the company is called Joncare.

Thank you

Grtb4 so vascular type is the front runner then. When do you expect an appointment with genetics?

Still feel unable to appeal at the moment, but I am prepared to admit this is a knee jerk reaction to yet another let down. I should ring them up and ask for details of the rejection, and ask how I actually appeal, but just feel myself fall apart at the propect.

He had kidney and bladder scans today. The scans have to be properly checked by the consultant, but the registrar thought everything looked normal. She was so plaesed to tell me this, bless her, actually dh and I wanted to hear the opposite as then we could rest a bit more easily about spinal pressure, but no such joy, probably is pressure on the spinal cord.

But don't worry DWP say he is fine.

sparkle ds got turned down the first time i applied as apparentley he was normal as a 3 year old when applied for motor ablity this was a child that wa snot even walking it was only when i appealed did someone look at it properley and was awareded even befor eit got to appeal stage .

yes it is the concern or one of the more rarer ones as it is unusrual to be born with it apparentley hmm should steer drs on here.Though part oif the reason is ds has scome skeletal abnormalites as well .

As apparently so do I which the Mri scan i ahd done of my hips has shown up

grtb4 I have yahoo messengered you.

Did you go through the reconsideration stage separately, or did you go straight to appeal?

One of ds' problems with this is that unlike your dc he scoresw relatively low on both the Beighton and Brighton scales as it so happens that the joints they measure are not his most hypermobile on the whole. He can't do the thumb to wrist flex or hands on the floor, however he can rotate his hip through nearly 360 degrees I can not even quantify the degrees by which he can move his shoulders.

bump

hi have left you message did you not get it?

and yes i asked for reconsideration first then filled for appeal and even before the appeal i got letter back saying hat hey awarded it .

hmm thats a pita but then saying that though ds scores highly its not any notice taken of by proffesionals on the whole .Think hypermoblity is just seen as being flexiable

yes it was harrow grtb4 luckily i live in harrow so didnt have to go far, we have all been seen there a lot over the last few years they are really good there and very thorough. we have had appts that are hours long.

we have gosh appt this thurs for ds (he is in a terrible state back pain worse than ever) dd1 got an appt through for gosh cardiac surgery clinic on 5 may so i think they are going to want to do her chest op soon which worries me a bit although i know it needs to be done.

i will try and get back on later as am ina bit of a rush as have gp appt today and nobody is ready yet!

I found your message grtb4, it isn't appearing properly though, or I am being inept which is quite likely. I have replied.

Good luck Ariane for thurs let us know what happens.

I am thinking of you ariane

hope its all gone ok today

Couldnt go to gosh appt, ds was terribly unwell last night had to go to gp this morn and he has got antibiotics for a chest and throat infection. The next gosh appt is 12 may so now i have to wait all that time and i was so worried about his back

I really couldnt have got him there though he is shaking and shivering and cant even sit up he is so unwell (after being told for the last 2 weeks by doctors that it was 'just a virus')

Iam so fed up

im sorry to hear it.hope he feels better soon .and no sometimes you just have to wait and i agree thats the hardest part the waiting

Oh ariane I am so sorry, you had to postpone it though, he couldn't have gone like that. I hope he feels better soon. Waiting is the hardest part I agree. Big hugs

Ariane when we get a date for the Eds clinic you want to meet for a brew if you like .And sparkle we need to meet to

That would be so lovely to meet up.

We have a date 3rd May for the clinic arghh seems so long to wait but guess compared to the 3 years we have waited

Am booking into premier inn night before as to far to do one day with all the changes and a 9am start

that would be lovely to meet up grtb4 i will keep 3 may free!

What doctor are you seeing? We saw dr vandersteen at the eds clinic and he was really lovely,listened to all my concerns,was really thorough when examining the dcs and put me at ease even though i was terrified about the biopsies.he was also one of the few doctors who wasnt scathing about ds still using a buggy he said that its better for him to do what he can and then rest if his legs/back hurt than to force him to walk more and cause him more pain. we also saw a genetic counsellor and prof pope,they were all really nice.They did change our beighton scores though from the last time we went, i now have 7 and dd1 and ds are now both 9.dd1 also has developed mild scoliosis but they said not to worry they will keep an eye on it.

hope you are all ok today.its a lovely day here but we are stuck in ex is on a fishing weekend so he wont have his visit which means i dont get any help either, im just planning on getting some tidying up done as the house is a horrendous mess!

ds is a bit better today but exhausted he has had 7 courses of antibiotics since nov and is just run down, has lost weight and is generally grumpy and fed up, he has spent all morning crying and im at my wits end.

dd2 has been unwell the last few nights she keeps screaming and grabbing her legs and trying to put her feet in my face and crying and saying 'leg legs toe toes' untill i rub her legs and gently squeeze her feet, she seems to be in pain but i cant for the life of me work out why she is suddenly so bad with it,as soon as i rub them she seems to calm down then goes to sleep.the gp has upped her laxatives again as she has been in agony with constipation and bleeding every time she goes and is obviously in agony.

I do have some good news! i got my letter from the family fund thay are going to pay for my driving lessons! iam so pleased as couldnt have done it otherwise and it means that hopefully my life might get slighty easier

hope you all have a lovely day.

Sorry, I know nothing about hypermobility, but your last post sounded do much like your DD was getting cramp. Do you think her medication might be causing a lack of absorption of essential minerals (like salt) which can cause severe cramp? Sorry if that's really obvious.

I hadnt even considered cramp, she is on movicol paediatric powders (laxative) so i suppose it could be that. it only seems to be in the evening that shes getting the pain but its very sudden and severe, she is only 15mths so its hard to tell as i cant get her to describe the pain,she just screams about her legs and toes.

I think i might go to the gp again and mention it as cramp does seem the most likely explanation, thankyou ellenjane

ariane, my hypermobile dd's muscles go into spasms when she tenses up or is tired; as far as I know it is related to the conditon and not due to any deficiency

hope your lo feels better soon

thankyou cory, i am just so worried my other 2 have eds and never had such severe pain at sucha young age she literally suddenly goes mad with pain and i really dont know what has suddenly caused it.

I am def going to have to see the doctor and get them to check her over as something is wrong not sure if it is cramp/spasms/pins and needles but it really hurts her poor little thing

Glad Cory could advise you better. Worth seeing the GP in any case.

araine good l8uck with driving lessons thats what im waitng to hear back from the family fund about to.How long did they take to answer you and did they give you list of instructors etc wher e they pay direct no clue how it works?.So any tips greatly recevied .If for what ever reason we dont get it im going to find the money and have them .It will amke the biggest differance to our lives for me to be able to drive

sorry about dd not doing well and heres hoping ds continues to improve.

Not sure exactly who im going to be seeing know Proffesor pope name was on the paperwork .Waiting for the date in writing they phoned it through.I been told to expect biopsis for both me and ds .Were coming up on the 2nd be me and ds and maybe dd all depends what my mums working whether i send dd or keep her of .I have to take pictures of the other dc and of my parents for them to