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.

thankyou it really means a lot, iam so glad i have somewhere to talk to people who understand it really helps

Everyone is having such a bad time of it right now - I don't often get the chance to catch up with this thread, but I really feel for you all. We had the school issue - thats why Home Ed has been such a welcome relief. We all had Swine Flu over Christmas with my son on yet more meds, he has had fluid on the lung twice in 3 months. He looks so pale and poorly still, its so hard to know what to do. When an illness hits it just makes all the other EDS symptoms so much harder for him to cope with.
We are back to the hospital for yet more tests, feel like we live there at the moment. Now being referred to the Dental Dept, it seems my son hasn't any adult teeth, has anyone heard of this with EDS before?
Sending love and hugs to everyone xx

sorry to hear you have all been unwell mycarscallednev, hope you all get better soon.

my ds is only 4 but has dental problems (extra baby teeth) but have not heard of anybody with eds having no adult teeth, i really hope they can sort it out for him .

Hi mycars you really are having an awful time. How did you organise Home Education? I am seriously considering it for both school age dc.

My ds starting getting his adult teeth at 4, and had his first eight new ones by 5 1/2, so EDS has affected that. I will do a bit of a google search through my favourite EDS sites and see if I can find out more for you.

Ds subluxated his neck vertebrae last night when we were doing physio. He was in so much pain I could get his collar on him, and had to stabilise his neck with cushions and pillows each side. Bad night, lots of pain, knackered again, and bless him everytime I was with him he just kept saying I am so sorry mum you will be really tired tomorrow. No school today, although it has finally gone back in, I didn't take him to hospital.....what is the point!

Hi Sparkle, your poor Ds that's dreadful, it's just awful to see them suffer, we had, and still do have nights like this, but with Home Ed it takes the pressure off for the next day - if we learn in our PJ's then who cares?!
I took my son from school due to the total lack of understanding, care and belief in EDS, even when presented with arm fulls of reports and offers of training and information from GOSH. My son was left to get on with life, resulting in anxious behaviour, increased pain levels,and his education just left by the way-side, despite us repeatedly asking school how he was doing and how we could support him. All this after the nightmare of getting a full SSEN, a nightmare that I have put on various MN threads, as it made me SO angry!!
Home Ed is amazing, I wish I had done it from the start - my son is 6 - 7 this year.

He left school last July having been given a Pre-school grade in everything. [ He should have had OT - his fingers bend every which way and sublux - but the school refused to buy the kit, and resented her telling them what they should be doing!].

During the summer I researched DDA and read the Lamb Enquiry report and decided that enough was enough, and if after two years of school this was the best that they could do then I couldn't do a worse job, and knew that I could very possibly do a lot better.

I wrote to the SEN team documenting my reasons and giving examples of the failure of the school to care for my son. I sent copies to the OT, and to the 'Case Worker' for my sons Statement, and advised her that I no longer wished to speak to the school regarding my son without her present and an independant witness. [ The school, and the Head had a history of unanswered phone calls, e-mails and appointments with both us, the OT and the Consultants at GOSH].

I told them that Home Ed was a situation that I had no other option than to take, as at that time I didn't realise how he would thrive, and how we wouldn't look back - it was a despirate measure. They tried to tell me that I couldn't/shouldn't do it - but it's legal and you have no obligation to prove or show anyone anything that your child does at home. - We do, as I also think that they should know just how well a child can do when it is approached in the right way, with someone who gives a toss!

I bought books - Home Education by Deborah Durbin published by Teach Yourself is excellent, if you're looking for one.
The internet is fantastic - SEN Teacher, Parents In Touch, ichild are all well worth it, as are the BBC sites.
We read, learn spellings/new words, do worksheets, use the computer, bake, garden, through the first part of the week. The second part is for 'out and about' - we've learnt all about the Normans by visiting a local castle, we've learnt about weather and then coastal erosion by visiting the sea-side. Food and where it comes from - anything that interests him. Most of this is sparked through chatting - he is interested in Dinosaurs - so it's maths worksheets with a Dinosaur theme, reading Dinosaur Cove books and visiting the museums.

Its great, it works around the EDS and all the hospital, OT, Physio etc. On bad days we may do less, good days a bit more. They say a child only learns at school for a max of 2 to 3 hours, well at home everything is learning. From the science of baking a cake to the hand eye co-ordination skills needed to use the wii [something GOSH reccomended!], it all goes in the pot. The best is that my son now reads, writes, and actively enjoys his learning. His progress has surprised everyone - with GOSH saying that they could have ASD tested him last June and he would have showed similar symptoms/signs that he was somewhere on the spectrum. Now they say it's more akin to PTSD from school, and any further tests will be far more representitive of what is really going on now.

I had no idea that my son's life and his ability to cope would change so much. We used to have regular meltdowns where he just couldn't take any more. Now when life gets tough or he has to do something he doesn't like - physio for example, or even simple - get ready to go out - its OK, he accepts and the job gets done. It has made a difference to us as a family, and I truely recommend it.
[As you can see without spell check I'm rubbish, but it's not stopped me - or made a difference to his learning - just made me more aware!
Good luck, and I hope things get better for you. No one understands better than us who are going through similar situations. It's so heartbreaking, but we're thinking of you xxx

My cars - You are awe inspiring and I really mean that. I have read your post with tears in my eyes, it sounds like you describing my ds, except we have been lucky in that the school does accept his dx, thankfully. But they don't have the facilities or infrastructure to support him, and many staff members don't have the will, they see him and his needs as at best an inconvienience and more likely to be an irritation which they take out on him. His selfesteem is on the floor. We spent time working together today and he blistered through his work, academically he is able, he needs to achieve his potential academically because he will never achieve in a phsyical environment and he knows it. His 2 sisters at 2 and 5 are more physically capable and coordinated than he is. Interesting what you say about the wii, I let his grandfather buy him and the dds one for xmas and he loves it and has been practicing his balance on the wii fit board. I hope it might help him to improve in a fun way, you have gievn me that hope. Thank you

Thanks ladies. DS3 was born yesterday and thanks to the labour ward being busy I managed to avoid induction as by the time a bed was free I had gone into labour on my own.

An over cautious midwife decided he must have EDS because his temperature was low so we ended up in the childrens ward for 3 hours while I kept saying his temperature was only low because I'd just changed his nappy and his clothes. Seeing the paed next week so hopefully we will get a useful opinion then.

DH is nervous about DS2's failure to thrive so he's trying to get me to feed whether DS3 is hungry or not despite me saying that he will probably only feed for short times before my milk comes in and it's all normal.

Sorry to hear that so many of you are having school problems although I can't say I'm surprised as I often find there is more support around for children with learning difficulties than physical ones.

Congratulations and well done

Why on earth would having a low temperature be related to EDS! Sometimes a little knowledge causes more problems than no knowledge at all.

I have to say that my ds was the opposite of failure to thrive......big fat baby he was, and grew huge! I know why your dh is worrying, but keep saying all is normal and I am sure dh will relax a bit. Good you are seeing a paed so soon, don't think they will dx either way yet, but good to get them thinking.

Have fun enjoying your new baby. Sending new baby hugs.

Thanks Sparkle. Anything that they both have in common gets the clueless people panicking and DS2 used to have temperature issues when he was tiny. DS2 is on the chubby side now, mainly because he keeps saying "I think I like some cake" with a hopeful look on his face that people find irrisistable! I didn't think they could dx a tiny baby with EDS but at least this paed is sensible and will keep an eye on him.

congrtualotions on the new baby.Its possiable there keeping eyes on hips a scould be a indication

Im sorry your all having such a tough time with school.Ds luckily is in a speech unit and with the Ot support and the teacher onboard he is doing really well.He is afirt for them a child with sever speech problems as well as Pd.

Its all in the air where ds will go next .As it affecting ablity to write etc .It is possiable he will go to a ss thats for children with normalish levels cognitive but Pd

Physio is now thinking that this is good as we can get with Ds physically .He can walk but in his own style and his own pace .But does need wheelchair for distance .

Still waiting on his afos have casting next month then another 6-8 week for collection.

Can't believe it is abother 6-8 weeks before collection! I really don't want my ds to go to a ss for PD, I am burying my head about that one I know!

My ds was sent to the hip clinic because of my EDS when he was a new born. They scanned him and kept an eye on him for a few months, but typical EDS his hips looked normal under ultrasound. When they discharged him from the hip clinic I asked my gp to refer him to Prof Grahame, which he did and dx ds as having eds with extremely hypermobile hips, neck, shoulders, and ankles. Oh how right he was! Ds was 20 months then and prof g said he had never dx anyone so young, and was still a bit tentative, but all medics since have said, yep he got it absolutely right!

I think the most important thing when they are so young is that we keep ourselves up to date with developments medically and keep a watchful eye. I can't help believing after talking with all you wonderful mums that we know alot more than they do!

sparkle the wait for casting is 16 weeks and im hoping its only 6-8 weeks could be longer.Ds has now been without Afos for 6 months!!! and there has been detrioation in his gait physio agree and orthtics.

Sparkle

The Ss for pd is likely to happen her ei know ds just can not move at the pace of the other dc but it also affects him writing etc , eating sitting though we now have specialised seating in school and special cultery to try help

Congratulations on your baby - that's lovely, if it wasn't for the lack of sleep, the IVF that we have to have.......no must stop thinking about it!! Big hugs and x's tho xx

My little boy is suffering now with pain and clicks and grinds in his neck - I'm wondering if we need to look at chairs and tables again. He's in a Breezie right now, anyone have any suggestions at all?

We're off to Centre Parcs with friends this weekend as Christmas was such a nightmare - am packing lots of pain relief - long with lots of wine!! It's lovely to go away, especially as we're going with friends who understand and support his EDS.
I do worry about subluxes and pain - it's hard to avoid the 'boom and bust' and monitor just how much he does when he is having fun. Just go prepared I suppose!

Pack some gelpacks too, the hot and cold kind, they are always a good stand by. Have a fanastic time. I haven't got any advice about chairs and tables really, I am just handling my ds by encouraging good sitting positions, sitting straight etc so he doesn't strain his neck, but really very successful I have to say. Sorry.

Great idea, we do have a selection stuffed in the freezer, I'll make sure I take them - and the hot water bottle, that's a good one too - thanks for reminding me - brain fog moment!! xx

Very have lots of fun, I will keep my fingers crossed for no dislocations or subluxations.....

Enjoy centre parcs. I'm going to try and persuade dh to take us there if/when I look presentable in a swimming costume again (although maybe after 3 dc's it will have to be a long sleeved long legged wetsuit with a lot of lycra lol).

DS3 had lost 16% of his birthweight yesterday so we were back in hospital yesterday. It will be NG tube feeding if he hasn't put any back on today so I've been expressing and cup feeding him as he's struggling to breastfeed. DS2's problems started like this which worries me.

hope things inmore ellie

mycarscallednev

Enjoy Centre parcs my dc love it

as for seating does your ds have any support in the Breezie chair .Ds school one has pelvic supports and is higher backed

Cheers everyone, think I'm coming back from CP pickled, my friend has just told me she's bought a bottle each, for each night!

The Breezie chair has just the back support, we had the pommel for the front but that was getting uncomfortable for him, we also have the little Teezie Breezie from when he was at school [we bought it, and I was giving them nothing after how they treated him!] Maybe I could google Breezie and see what add-on's they do for the chairs.

Your poor little baby, ellie, I hope things get better for you all. My little boy had trouble feeding but we did get there in the end. He still struggles with things like open cups - mostly he wears his drinks unless we use a sports bottle!

Hi,
My son is 5 and has hypermobility grade 9 and has dislocated his hip and shoulder and broke his wrist but he seems to be going through a good phase right now, nothing for the last year touch wood! Was reading the comment from sparkle rainbow about the sweating and the smell of vinegar, my son does sweat a lot, but I was forever at the hospital with his brother who is 9 months for stomach problems and he sweated a lot and I was always saying how strongly he smelt of vinegar! It turned out he is allergic to milk and since he has been on soya milk, the smell has completely gone. I wonder if the smell of vinegar is a sign that he has an allergy? Might be worth checking out anyway.

hello weekirkie my ds has a lot of allergies (milk,egg,nuts,fish and shellfish) and he too used to smell like that as a baby untill all the offending foods were cut out of his diet, at his worst when he was very sick before i found out he literally oozed a nasty vinegary smell especially from his scalp, must be something to do with the allergies very odd though maybe its the bodys way of trying to get rid of what makes it unwell (my ds also ended up covered in huge boils and got a blood disorder due to the allergies-it was a horrible time)

Hi Weekirkie thank you for that. An allergy causing the vinegar smell has never occurred to me. It would be a shame because ds loves milk. I am seeing the rheumatologist on Thursday, so I will add it to my long list to raise with them.

Ellie, I am thinking of you. My dd2 struggled to gain weight and to grow for about the first year, they spent so much time investigating her I was so worried she was poorly. It turns out she was just going to be small, despite being my biggest baby by miles. Try not to panic, it doesn't mean he has eds, it could just be an immaturity issue, or just finding his own level. Taking him in is just as a precaution. I know exactly how you feel and that you will be so worried, I am sending all my best thoughts to you.

So Rheumatologist on Thursday, I could do with your opinions. To review, ds was dropped by existing ortho surgeon after head to head in which I pointed oput he didn't know what he was doing, and surgeon agreed. Rheumatologists persuaded me that they could up their game, find him a good ortho surgeon in Birmingham, we are btw Stoke and Staff, and they could manage ds better than GOSH. So far despite me chasing 4 times, and my gp 2 times we still have not been accepted by ortho surgeon in brum, so ds still has no support. Had to make a complaint re emergency services handling of ds in Nov, was told by Rheum that she would be handling investigation, have heard nothing. Ds constantly plagued by neurology symptoms, needs orth surgeon asap, still dislocating or subluxating neck vertebrae regularly. Taking pain relief regularly to get through day, regular urinary incontinence, small amounts though. Physio remains excellent, jury out on clinical psychologist as yet.
I am thinking I need to go in and demand the following :
1.Results of emergency incident investigation, including how going to ensure doesn't happen again.
2.Evidence of referral letter having been sent to Birm Ortho surgeon

1. Referral to GOSH asap, all letter copied to me directly.
2. Evidence of their support of DLA claim

What I need out of this is:

1. A better management strategy for emergencies
2. An ortho surgeon to advise on neurology asap.Like yesterday not still waiting four months later!!!!!
3. Referral to GOSH specialist unit, in EDS and paediatrics, who will accept referral asap.
4. Clear management plan for me to report dislocations, subluxations, pain management, physio successes and failures, and get their input between visits.

What do you think? Be critical, tell me what I have missed, what I am getting on my soap box about. I am prepared to be polite but firm with them, so shoot from the hip for me.

A woman on a mission, they'd better watch out - good for you, if you don't fight an be a total pain in the arse they leave you, and focus on those that are! Get all letters copied to you, find out the names and contact numbers of the consultants secretaries and call them once the letter is sent, with a 'I'm just seeing if the letter has reached you'. I have done this many times, and was offered a cancellation at GOSH and as we could go - we're in Sussex, we went much earlier. You have to be ruthless and not take no for an answer. It makes you into a harder person, but when it's for your children you do anything. Make notes of dates of phone calls and get the name of everyone you speak to, to avoid the 'who told you we could/would do that' and then forgetting. Its a bloody nightmare, but I know you will get through this. We're all here to support each other and help where we can. Good luck,xxx

I am waiting for a diagnosis from GOSH for my D. She has hypermobility, DDH and radial ulnar synostosis and recently lost movement in her hips which has had an impact in her walking ability...So fed up with numerous hospital appoints and no conclusive diagnosis.