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.

THC Damn the bad news about the scoliosis, no chance of surgery to correct it then later?They can do that can't they, or am I imagining that? How is he doing generally?

SparkleRainbow - very interesting to see that your sister only started joint pain in her 40s. I had just assumed that any pains i get in my joints now is just because i'm getting older - and was always twisting and pulling joints when i was younger - now is just the payback for that!
Any tips for managing expectations would also be gratefully received. I appreciate that managing expectations when being permanently in a wheelchair is far greater than my DS - but as an 8 year old that has been left so far behind physically than his peers, but mentally believes he can still keep up, i find it quite difficult to explain without sounding hard.

That is exactly where my ds is and he is 8 too. He started seeing an nhs clinical psychologist shortly before xmas, he has a lot of demons to deal with over this, and I think she is helping, it is a long process though, and we are only at the beginning. When you have a dx I would ask the gp to refer you to an nhs clinical paediatric psychologist. My ds is a long way behind too, his core muscles strength is very poor, his coordination is way behind his sister who is 6, he falls all the time, misjudges gaps and steps, walks into walls and door frames, falls out of bed, can't skip, ride a bike, swim, play football, but interestingly can climb rock walls really well, and his little sister taught him to swing which he can do unaided and loves. He is always last in sporting competitions, he couldn't move forward on a space hopper at school which was interesting to watch, he can't hit a ball with a bat, and can't throw a ball forward, but he is getting better, with a lot of practice at catching a big ball thrown up in the air, or buced on the floor. He now has in place a term of gross motor skills and fine motor skills work with a specialist from the local PD school, and his one to one will take this up for the rest of the year. He will also be having specialist swimming lessons at the PD school's extra warm pool. His core muscle strength of lack thereof, combined with his hypotension, means he exhausts himself so easily, and the cold water in a normal pool shuts his body down, which is scary to watch!

Sorry long one, does this kind of info help, at least you know you are not alone. My ds isn't in a wheelchair either, some days he looks so "normal". That can make difficult to deal with others comments and expectations...."why can't you do what everyone else can do" stuff

I think its when our children get to an age of acute awareness in each others abilities that self doubt creeps in. Partly its general society that is to blame. I was watching sports day at school just before term ended. KS1 sports day - where my DS2 is, the parents and children cheered on those participating with frames, 1-1s helping etc. They cheered their achievement in completing races.
KS2 sports day was completely different. DS1s peers commented on his slowness and his gait. They asked why his arms flail. There was no cheering, just a team that he was in wishing they had of had a faster teammate. This year he has an excuse - he's just recovering from a broken leg, but next year?
Interesting re the clinical paediatric psychologist. DS3 has just been referred for different reasons, I might have a word and see if there is a quick referral route.
I've always found the best support on MN. It is so different to find parents that live in the real world where they are dealing with the day to day realities that our DCs bring. Medical and Educational professionals are all well and good in explanations and advice, but unless they have personal experience, they do not have the full picture on the whole effect on the family.

That is true, unfortunately my ds is not always bl;essed with medical professionals giving any explanation, advice or understanding.....well that is my frustration coming out

My ds did two sports days this year, one at his old school in which he was made to feel a failure, and one at his new school who made changes to sports day which altered things for everyone to make ds fit in and not be shown up to be so different. It is all the attitudes of the staff that makes the difference, in my experience the kids follow the staffs or parents lead. If the staff are positive and inclusive the kids are to, it becomes an inbedded inclusion. I am so glad I have moved ds, if he had stayed where he was I think his depression would have become unmanageable.

Just back from taking ds to clinical psychologist.....I am exhausted now, and having to settle for as it is too early for . I am going to ask gp to support application for a blue disabled badge.....what do you think the chances are?

I was having a conversation with a friend about blue badges the other day. From different threads on SN there seems to be very differing experiences. Her GP would write and support, my GP would probably not. Then i suppose it depends on the council. But what's that saying "nothing ventured - nothing gained" What have you got to lose? It's not as if we're not used to 'systems', 'qualifying criteria' and 'legislative hoops'. Let us know if you get one. I always love to read the good news stories.

Good luck with the Blue Badge application, Sparkle. Dd had one a couple of years ago, which expired when her first DLA award ran out. Where we live, there aren't many car park spaces that are free to use anyway, even at the hospital - so I haven't rushed to reapply.

Hope everyone is doing OK? Just going to start reading back to update myself on how you all are. My dd completely and very painfully dislocated her knee last weekend, she was only walking through our house from one room to another (she doesn't usually need her wheelchair for that). It's wobbly, but on the mend slowly.

good morning everybody hope things are ok today for you all.

sparkle good luck with blue badge, they are really handy to have. dd1 and ds have them and it makes a real difference being able to park near to where we need to be when i get a lift from my dad or ex as otherwise it can be a bit of a struggle. i do find that i still have to pay at a lot of car parks but as it can be used for up to 3 hours on yellow lines it is well worth getting one.my gp surgery has also just put in 6 free disabled spaces right outside the surgery too so will be even better for dcs now .

it was interesting to read about your ds having trouble in cold water in pool, both dd1 and ds go white then blue then nearly purple with bright blue/purple lips after just a few mins in swimming pool, they seem to go cold as soon as we get in and have to be taken out stiff and trembling with cold and stuttering over their words as they are so cold, i thought thet just had bad circulation. they are fine in hydro pool at hosp (lovely and warm). i dont tend to take them much now to normal pool as its such a waste of money when they are only in there 3 or 4 mins.

THC is there nothing they can do for the scoliosis at all? my dd1 has it very mildly and both ds and dd try hard some days then the next are exhausted, grumpy and achy. its very very hard to find the right balance and avoid them feeling awful the next day isnt it.dd1 especially wants to do things and will sometimes push herself too much just to join in then suffer for it the next day.

dd1 was really poorly over the weekend, she suddenly got a huge pain in her head and was crying and screaming in pain then all of a sudden couldnt speak, stuttered, muddled up words completely and was talking complete nonsense, she was looking at me petrified as if to say 'i know what i want to say, what on earth is coming out of my mouth?'
after nurofen and calpol and an hr and half of her being in agony she complained of pins and needles/numbness in her right arm and right side of face so i think it must have been a migraine. i was really panicking but at least i know what im dealing with if its migraine, she was fine a few hours later, just tired it was scary though ds gets them but has never been that confused and unable to speak.

sorry, such a long post! i dont get on here often enough!

Ariane, it sounds like a migraine, and they can be related to EDS, I researched that when I started with them, fairly recently. I don't know if you can bear it, but you should probably go to the gp, and get her checked out anyway..... sorry.

I have an appt to see the gp with ds the week after next, when I will raise the circulation/heart thingy, and blue badge....and something else which escapes me right now but I have written it all down.

Deepbreath nice to see you here I hope dd is ok, I was reading up on fb that she had fallen on her poorly knee too......

A quiet day planned today, dh back at work, kids are still in their pjs at 9.30. Bit of ironing, bit of cleaning, bit of playing with the dc......gosh what an exciting life we lead.

yes, i think i will take her to the gp.ds gets migraines so do i and ex but i want to get her checked just in case as none of us have ever had the speech problem with it.

we were all in pjs till 11am im afraid! bit of a lazy day here which is nice for a change no rushing to school etc to worry about. i have been desperately searching for my provisional lic as have theory test on 19th but cant find it anywhere and am panicking! Driving lessons still going badly iam a nervous wreck about it but keep trying to tell myself itll be worth it and will help me so much so iam forcing myself to keep going with it.

I am pretty sure I remember speech problems being possible symptoms though.

Don't give up on the driving, it will make such a difference, and your confidence will grow with more and more practice, even when you have passed your test. My mum said after you have driven the first 1000 miles, you begin to feel more relaxed, and I think she is right. The prov licence will turn up, they are small things, it will have got tucked up inside something.

I have done little cleaning and no ironing, but |I have cleared out two big bag loads of magazines etc for recycling.....nearly all diy magazines from last 20 yrs of my dh buying them, or getting them from home build shows. Am hoping he has forgotten about them as will be taking them to recycling point before he comes home

ariane5 - I always find things in the first place i looked. I tend to briefly look there, then think i can't find it then hunt like a dervish everywhere else. These things always turn up though.
Good luck with the driving. I've promised a friend that i will learn soon. We have a deal. She will start learning to use and love the internet, i will learn to drive.

Gosh is it only 5.30.....can I not have some yet?

Morning Can i reccomend that you ladies pop over to skituk and become verfied memebers have just come back from the most fantastic week camping with everyone .

We took over afield and everyone had a blast .No one to stare at what your child did or did not do and loads of help when needed and a lot of fun.

Ariane sound slike could be a severe migrane when i get bad one its liek I am drunk.How is dd now?

They will montior the scolosis on ds and decide surgery wen older but becuase it is progressive surgery may not be a cure but time is on our side as he is so young and so much advances are being made

Raynuads can be linked to eds both my older two have it and same symptons with ds2 being worse .Ariane am going to continue with my lessons once find instructor that does hand controls .

Sparkel

How are you and how is ds and the rest of the dc.I would ask your gp for the blue badge support .Ds3 is really good and make a world of differnace to his ability to enjoy life

Aunteveil

Think i am fortunate that ds3 othe rproblems means he is not suffering the same anguish as your dc .Being in speech base has prottected him a lot .But do tink come year 3 where he is only in speech 50% of the time then that may be differnt story

Hi THC, Remind me Raynaulds affects the circulation doesn't it, I think dd2 was investigated for it when she was going blue.

Ds is having a lovely summer although he is bored, little pain cos he is lazing around a lot. We did take him swimming and rock climbing (thank you FIL) at a specialist centre which caters for disabled to help develop core muscle strength, but he really struggled and cried most of the time. FIL took dd1 too and she leapt up the climbing wall like a goat, she has little fear and and no eds!

I am struggling with hip and knee pain at the mo. I think the hip problem has set me knee off, cos I have been unbalanced. Think it is beginning to affect my lower spine now. Heh ho that is how it goes.

Yes sparkel it affectscircu;lation and means suffers often ave blue feet and hands even in warm weather .

Sparkle see above abou camp would really reccomend it .Mind dc want to do nothing today bar relax which is fine with me am pooped

yes think you can really see the differance between the dc ds3 is way worse than my others .

And outch on the pain and of course being summer holidays no chance of resting

I am trying to rest, and not drive anywhere, can afford to go anywhere anyway. Yesterday mn friend gave me lots of ideas for amusing ds, and we had a much better day, so I am hoping that will rub off on today too.

You see that circulation description fits dd2, she was going blue as a baby, and was admitted to hospital for days twice whilst they tried to find the cause. She did two different types of heart murmour, one innocent and one which was a pulminary stenosis, which they tell me has rectified itself. But her circulation is still terrible, she chooses to wear thick jumpers owhen everyone else is in shorts as she feels cold, and she has a patch on her leg/shin which is permenantly mottled and blue as no proper blood flow there.

I did get her checked out by the paed for EDS and she said that she was less flexible than me, but having said that she has started telling me that her knees hurt........

Went to gp and she thinks it was a migraine, told us not to worry but if it keeps happening to see them again. apparently it can affect speech like that so iam very relieved! dd seems fine now and is back to her usual self.

found my provisional licence so i can do my theory test next week, have a lesson tomorrow that im not looking forward to but i am being positive a nd telling myself to keep going with it.

I have had a couple of rubbish days just feeling really tired and achy, especially my neck and oddly all the joints in my feet are terribly painful. my mum and sister have been round every day helping with the dcs, tidying up a bit for me and helping with appts etc i really couldnt manage without them.

i know what you mean about not being able to afford to go anywhere sparkle- we are having a 'making' day today (homemade pizzas for lunch and now an arty crafty type afternoon making cards for dcs dads bday on saturday).yesterday was a lego and duplo day, its hard to keep them occupied for long though! dd keeps asking to go to cinema but the hassle of getting there coupled with the extortionate cost has meant its a no unfortunately.

we all have bad circulation, i go blue easily and once im cold im cold for hours, blue nails/lips and shivery even in weather everybody else is warm in,dd and ds go white a nd get blue/puple lips if swimming. ds also has a varicose vein on back of his leg behind his knee now, its a big one too i cried when i noticed it last week, he is only four poor little thing.

When he next goes in to see dr, get them to check the vein, he is awfully young to get that. They can ache too, I know mine do.

I am glad you found your licence, try to think positively about the driving.

I am sorry you are having an achy time, my hip and knee have been painful today, but actually feel a little better at the moment as I have actually tried to rest it a bit today.

bump

yes will def be getting somebody to have a look at ds vein its very noticeable if hes hot or standing then at other times i can hardly see it.

hope everybody is ok today, iam having a bit of a rubbish day, lots of housework to do and ds is whinging and moaning and fidgeting constantly he keeps crying and saying hes hungry constantly and just wont sit still. its such hard work wjhen he is like this he must be so uncomfortable

Ariane -Poor ds, hope today is a better day for him.

Took ds to the gp yesterday, he listened to his heart and couldn't hear anything abnormal, but told me to get the paed to check it out when we see her in Sept. He gave me a copy of one of the ortho letters, the last he had, so my records are nearly up to date, and told me to keep chasing the ortho for the follow up appt. He also said he would be supportive of applying for a bkue badge, so will press ahead with that. Brief up date, hope everyone is ok, must go and through myself in thr shower whilst all dc are quiet and occupied with the TV

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hello,sparkle- glad your ds heart was ok when checked by gp but its still good idea to get it checked by hospital like gp said just in case, but fingers crossed itll all be ok.

I passed my theory test on friday (only just-got the minimum amount of questions right and only just scraped through on hazard perception bit), have another lesson tomorrow at 9am, i still dread it iam hoping that one day it just all clicks and i cn do it.

things have been really bad for me the last week or so ,i started getting very upset every evening, bizarrely always around 9pm and end up in floods of tears then it progressed to being in the daytime too and i feel constantly tearful and on edge it is horrible.iam really hoping a big part of it is pmt as otherwise im worried iam losing my mind