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.

hi not seen her yet we go on the 21st and yeah she has come across a few cases hence why when it came out what he had she grabbed him .

Think proff Graham like sthe more case where it is just hypermoblity not added extras as menas that his excersise plan will not work

yeah where ds is struggling hence the need for even better chair in school .But to be fair ds3 is such a happy little thing your never really know

Hi, Just had a look at your last few posts. I was seen by Prof Gaham, and told he didn't see children when they were referred to see if they have EDS.

TheHuman, asked me to come along and post on here with you guys, I have previously spoken on here.

to get them to look at EDS you need a referal to proffesor pope as he can make the dx /.His main out area is at sheffie;d but does also do a edx clinic in London and may do others .Gp can refer .

Ye sproff GRaham seem to mainly deal with hypermoblity and only if has signifcant affect will not deal if dc have other issue or anything other than type 3

Have they said what type of EDs you all have just when you said about eye problems more common in some forms than others

My ds and I have EDS hypermobile type, dx by Prof Grahame 20 years ago for me, and when ds was about 19 months. I am seen every 6 months by an excellent rheumatologist, quite young called Dr. Price at UHNorth Staffs, she specialises in connective tissue diseases, and is great for me. She keeps me going. My ds is more complicated, he has Dr. Packham Rheumatologist and Dr. Tabor Paed Rheumatologist, Dr. Jasani Ortho Surgeon and Dr Reynolds Paed all at UHNS, he also now sees Drs at Mr Marks clinic at Royal Ortho Hospital in Birmingham/children's hospital. He als has physio, PDSS support in school and clinical psyc who is fab.

We don't have any eye involvement, but btw me and ds we have unstable spines, urinary and bowel incontience (ds) cardiac involvement (me) asthma (me) poor core muscle strength, coordination, kinesthetic awareness, migraines (me) neurally mediated hypotension......more I am sure but that is what comes to mind.

Remind me tranquility where you are in terms of dx, and issues

Well have filled in the blue badge form, and spoken to lady at the LA who helps process them, she was quite reassuring, but we shall see, should know by the end of next week!

fingers crossed how did first day at school go ?

I had struggle get blue badge a smy dla was only a year so did nto get automatic while appelaing my claim but Gp has filled it in so fingers crossed

Your dla is only for a year? Why pray tell did they do that? My gp said he has never known a blue badge request be turned down when supported by a gp. So I am sure you will be fine. Unfortunately are LA has just changed the way they do it, and no longer ask GPs for the comments as they don't want to have to pay them, so may nmot be as straight forward. Trying to remain optimistic.

Frist day today for ds and dd1, so we will see. Ds was awake a lot last night, he dislocated his shoulder in nbed and so lay screaming in pain for over an hour.. Despite being very organised we still had a mad rush to school, but we made it!

How about for you?

Rio went back todya should gone back yesteday but came down with sickness bug on Sunday .

Hope school has gone ok

And just checked our county now makes its own mind up on blue badge But Dr will help me if needs

Adn yeha apprentley someone with no training thinks may recover but its happeing a lot due to the proposed changes in dla

After I spoke to the people at my council you will not have a problem getting blue badge at all. I would fill in the section confirming dla award, and the following sections on diffiuclties walking, state on the form that you have the full support of your dr, they won't go against that, ever!

I am a bit nervous today, the phone has been ringing constantly, and keep leaping to it in case it is school, but hasn't been so far....just paranoid I guess.

Sparkle - its one of life's mysteries. When you want the phone to ring - it never does. When you don't want the phone to ring - it goes constantly!
I spoke to someone in the council recently about blue badges - not for me but a friend. Our council are very tight at the moment and whereas a few years ago the DRs input would guarantee it, it's not always the case now.
I think each council has its own view. We live in london - where there is always a parking problem - and a lot of abuse of disabled bays. There are always complaints in the local paper. Maybe that's why they are so tight?

yeah maybe but am going to kick up stink if I am refused

Hoping ds home now and ok Sparkel

Aunt yeha im in the surburbs so sim ilar issues here

You see in rural staffordshire congestion means getting stuck behind a tractor for a couple of miles.......hopefully ds will get his blue badge!!

I would love to see that conversation between you THC and your council, when you go in in your wheelchair and ask them to explain how you are not disabled....you could roll over their feet on the way in and on the way out!!!

Ds is home, he has had a lovely day, been very smiley apparently. He has taken care of dd1 too, who has had a good day.

im gla ds and dd had a good day back an really hope the school are more undertsanding of ds needs .

Sparkle here you could get stuck behind a tractor though i amy blast past in my chair lol

Funnily enough my FIL asked me about a particular country road junction on the way to the school and asked me how long I get held up here as his sat nav says it is a congestion blackspot. I offended him greatly by laughing a lot and saying I think everything is relative, so far this "blackspot" has never taken more than 1 min to get through!!!!

Ds woke up again with a dislocated shoulder this morning, same one the right again. He went off to school happy enough though, so that is good. I spent hours awake last night stressing about ds' rheumie, I don't kn ow why as I know there is nothing else that can really be done, just the physio and the pain relief, but I know we go next week, and I just want to shout at his arrogant face re ds' flex and extension xrays showing true sublux in normal motion.......Actually \I want to stick two fingers up at him and say I told you so, but I will refrain and keep to a certain level of decorum!

lol i had same thought when it came back with EDS ,Not as much decorum as you I did actually say well it only took you proffesionals 4 years to catch up with what i knew .

And am intrested in what they say at GOSH on 21st but ekk can not get transport for this tripas has to be authorised by local pead so am going to have to get train first time after that they cna book it

That is going to be a bit of a challenge, can you get help with negotiating the stations in the chair, and will your mum go with you to help with Ds?

no can not ask mum she has to juggle enough as it is and will need her to do picks up for dd .Luckily lomg as the ramps I can mange with my chair but will take the power one so he can ride on my lap

But be intresting to see what they say

Ds is hating his physio program as were doing before school he was asleep at 4,40 last night right through to 6am

My Ds is very tired doing his too, even after only two days at school. I had to wake him this morning at 7.15, he was shattered, then in pain, so couldn't do physio anyway!

Will he sit still enough on your knee?

I had a letter from one of ds' Consultants, and had to ring GP, who came straight to the phone to discuss it with me...(what would I do without him I do not know) There is good news, but also so frustrating, upsetting etc I just sat and sobbed holding the baby on my knee. What do we know...well they clearly know nothing at all, my gp has helped me to understand what they are saying which is...

1. space around ds' spinal cord is good, appropriate for age,
2. no permenant damage to spinal cord as yet, but this can and probably will change.
3. no idea what is causing pins and needles and numbness in lower limbs
4. no idea what is cauing incontinence
5. no need for spinal surgery at moment, therefore spinal surgeons don't care...gp said if they can't crack you open they aren't interested in you anymore
6. three different letters from same Dr saying yes dislocation and sublux of spine, yes again, and now everything ok.
7. he is subluxing under normal movement it will show up in mri, oh no mri was blurry but it didn't show up...we don't know what this means.

Gp said to me he knows I want answers but the reality is they have absolutely no idea of how ds' spine is moving, no idea what is happening, no idea how much danger he is in, and no idea what to do. What do I do, what action do I take when he is doubled up with pain, screaming, incontinent with lost feeling in his legs and strength in his hands.....

I hate this condition, I hate EDS, I hate it.

hmm google cauda equine syndrome as that can come and go in early stages and take slong time to dx normally unless it goes completley tits up which is unsurual

But symptons could fit but good that plenty room round spinal cord

Thank you for that I will.....some good news his blue badge arrive today!!!!! Only three days after posting, I am so relieved and surprised, no fight this time, just straight granting of it. Phew makes a change.

Great news that you got the blue badge, how are you getting on with it?

I have posted on disabled adults EDS/hms thread in special needs, if any eds parents around want to chat on there x

It is fantastic, I didn't now what a difference it would make, and we have to go to the hopsital with him tomorrow, for a marathon consult, and we won't have to pay, and he won't have to walk miles from the car. Just a little thing like that makes it so much easier.

He had one of his funny turns this morning, went white, sweaty, dizzy and felt sick and cried. In the end I went and collected him. He lay down in bed for an hour and is nw on the sofa, he says he is feeling better now, although still looks very pale. Is this EDS, or is this something else? Who knows....clearly not the doctors.

I went pale yesterday due to extreme pain, do you think that could be what made him weak and pale? poor kid!

He does do that too when his pain is bad, but he said he had no pain to speak of this morning.....I am wondering if he is developing cardiac symptoms...hopefully I am just being negative