EDS Hypermobility No. 2

[SparkleRainbow]

We reached 1001 threads, so here we go with a new thread. This thread was originally started so we could get together and share experiences and expertise in Ehlers Danlos Syndrome, Marfans, Benign Joint Hypermobility, and any other medical conditions including connective tissue disorders which cause joint hypermobility, pain and all the associated symptoms.

HELLO new best friends.....got school choice we wanted so feeling gooood..no post had to ask school!!!

ReindeerBollocks would love to go through check list with you..nice to know he is not the only one

Are you refering to his x table ???

Thats fab news bizzey, congratulations.

Congrtusltions bizzy

The normal is excersices plus also help with handwriting allowing laptop and find high school are better about use if them that primary

Occasionally orthtics are prescribed though normally they say a good firm shoe .

They tend to be more relaxed on under 5 as they point out all under 5 are more flexible . Unless it is screamingly obvious that they are nowhere near normal

At 2.5 first time we saw physio she was like yes he'd not walking will monitor him come back 6 months was no help at all .

But to be fair Herts have been more helpful in seeing physios/Ot and think sone of that come because thanks to here I am far more informed

Ds3 wheelchair arrived other day means that long as have someone with me then when ge is tired ge can ride . Other times he rides on my lap ( luckily he us tiny)

congratulations bizzey, it's nice knowing that the next stage is (relatively) settled.

We've made some progress re the vomiting - after DD had a bit of a brain melt yesterday (she doesn't cope at all when she feels doctors aren't doing anything, and the final straw was the GP saying that there was nothing he could do to get her seen sooner - thankfully the only physical damage is a sprained ankle) we went through to A&E, both of us cried at the doctor we'd seen the previous week, and he put his arse into gear and is calling a case conference of consultants (including rubbish paed) on Monday morning, and they'll decide amongst themselves what to do. There ought to be at least two gastros in the meeting as well.

I got the feeling that A&E/Paed are panicking a bit about the possible EDS and don't want to either get it wrong, or step on the toes of the new hospital, which is why they've not pushed for more investigation so far.

So till Monday morning she needs to eat and rink as normally as she can, take regular paracetamol for her stomach pain, and then see what they decide.

Midnight sounds like things are slowly moving forward, I'll be thinking of you on monday.

The assessor was from the physical impairment and medical support team. We got a copy of the report today. It went on about how he doesn't have learning difficulties and he can use a cup with a lid on his own and then said he can walk and run (I wouldn't call it runnning) with some difficulty and listed all my concerns about him starting school and misquoted me a couple of times. When I picked him up later he went straight to sleep and slept for 2 hours but the assessor didn't see that. The report also said that he was able to keep up with the other children but some of those children were a lot younger. I'm going to have a talk with the SENCO I think because she seems a lot more understanding of my worries about him.

bizzey it was your description of your DS on page 17, even down to the hairy back! You have described my DS perfectly, and he also struggles with his times tables, he can grasp them, but then won't recollect learning them a week later.

midnight glad to hear your local hospital are listening, I would mention possible stomach acid as from where you describe the pain sounds too high to be faecal impaction. I could be wrong, but hopefully you'll get some answers tomorrow.

thehuman thanks for letting us know what is likely to happen, his primary school seem quite amenable to a laptop so I'll suggest it at parents evening later this week.

ellie sorry to hear the assessor was so unsupportive, that really is annoying when they won't recognise any of his symptoms. I hope the SENCO is more supportive and can push for another referral to a different assessor.

I have to say I feel less alone because of this thread. I always knew DS had his little quirks and although I've been worried about his progress I feel much better at pushing to access the right support for him.

I filmed ds3 running other week but don't think there is a way to share it on here , will try when back home

midnight thinking of you tomorow/today...

riendeer soon hairy backs might become hairy chests..ha ha

appointment at childrens outpatient dept tomorrow lunchtime - DH took the phone call so didn't think to ask which speciality it was with [sigh]. DD much happier .

midnight good luck ! for tomorrow...remember ..knowing something is better than not knowing anything at all...hope things get better and you get answers which is all you want

goog luck midnight

Hi everyone, sorry I have been awol, but have been struck down with a stinky cold, and not felt like coming on the computer and staring at the screen. Anyway I might have infected you all

THC - Dh is doing ok with his new job thank you. He is still suffering from anxiety and self doubt about having lost his job in the first place, but actually I think it will be a good job when he gets his head around it. Ds and the rheumie...well what can I say....I have a letter from the rheumie to the gp after our consultation last week, it says, he looks like he has healing chilblains, but acknowledges that he has none of other symptoms of chilblains, and it wasn't cold when it happened (and two gps and ractice nurse saw his feet at their worst and I am sure they could recognise chilblains), but it does look like it is healing so he can't be bothered to do anything about it is leaving it....no follow up, no explanation, no care advice.....he is a complete and utter **er. The truth is they know it is vascular in origin, but they don'e know what it is, I would have thought blood tests for vasculitis would have been in order, or rheumatoid factor but the rheumie couldn't be bothered. Ds's feet are looking much better at the moment, but I think that is because he hasn't walked anywhere for more than a couple of mins, and if I took him out for a walk or to the shops it would flair up again.

Bizzey - fantastic news about the school, well done.

Midnight - I am thinking of you, I do hope you get some answers and some advice today

Ellie - the outreach worker from PSDD who came to assess ds actually talked to me for over an hour first, that was her main source of assessment of needs, in her words, she is not a medical professional, it is an unusual condition, she talks to the parents about what the issues are and then assess how to help. She even overroad the arsey headteacher about access to disabled toliets, as he spun some line about not needing them and she agreed with me that he always needed to have access to them because we never knew when he was going to have an accident. I am so glad she got ds to another school it is so much better now. Having said that ds had a melt down on friday, lay down on the classroom carpet and sobbed saying he couldn't do anything and wished he wasn't alive anymore...so we have a long way to go. We have started a star chart for positive attitude days, 60 days = new game for the wii, so I have to start saving now.

reindeer - you are not being hopelessly optimistic about physio, it is a long slow slog, it is hard to fit in and be consistent, but if you keep at it it does help I think, with the dc, not so much help with adults I think, maybe it is helpful because of the growing dc do. Anyway physio is basically what we've got, and all that we've got, so it is important for that reason alone.

Hi everyone, hope all ok. Hope everything goes well today midnight.

Just had glorious weekend away with my mum and the dcs. Now back to earth and real life - yuck!

Feeling smug though as made dh make some phone calls for ds and school. He has come off phone ranting about how horrid they are and completely uninterested (muttering I told you so, under my breath now - tee hee). He even agrees with me that yes there is something definitely unconventional about ds and that we need to know full picture. Hopefully will give him a kick up the bum and get him on side now, (dh works in legal so really need him to threaten lea, so we can get what I want).

Hope you feeling better sparkle and that ds happier this week.

Thank you spiderman..tis only a head cold but they can make you feel right groggy can't they. We can tick off another positive day for ds at school, thankfully!

spiderman, threaten away....if I can help let me know I write quite a good lea threatening letter these days...and eventually it did work for ds.

Hi Sparkle - not been here for about a year - life hectic!

Do read through though. Have they checked your sons feet for piezogenic papules - my son has these and autonomic nervous system dysfunction [with all the other EDS stuff!] and this makes his feet itch, hurt, and the lumps only come up when he puts weight on his feet. The problem was noted at the EDS Diagnostic Center when we saw Prof. Pope.
I posted a thread earlier about CIC but have had no relpy, but if anyone here has any advice I'd be really grateful. Hope everyone is ok - sorry we have been absent but things gone from bad to bloody awful this past 12 months, ho hum! xx

bizzey so pleased for you and the whole family for getting your DS to the school you wanted . Only just got back on MN as spent the weekend making bridesmaid dresses - for a friend.
Hopefully midnight will have something good to report about after today too. We need some sunshine in our lives with this cold weather.
I'm going to the school PTA meeting this week. I know its going to be olympics this, olympics that. Although I have 2 DS that are sporty, I will be flying the flag for all those who find this constant sportiness either impossible, or difficult. I'm already getting prepared for the usual frosty looks when I suggest ways of making all activities accessible . We have a local paralympian - so I hope to use the paralympics as a tool for inclusivity.

auntevil - you go and fight for accessible activities...I am behind you, am sick of some school's attitude to "inclusion". Dc new school is fab though, so some places and professionals do get it!

cars - hiya, long time no see, nice to have you back. I have not heard of piezogenic papules, so am off to google now....thank you. I will go an hnt for your CIC thread too. Please tell what has been happening in the last 12months, even if we can't help, it is good to vent.

Vent coming up......ds neck pain last night, urinary incontinence in the night......again! Shall I bother to tell drs who don't give a damn, and don't do anything anyway....nope thought not. Am going to keep a diary all the time now, not that I think it will really help, but when we see the ortho surgeons at the royal ortho hopsital in birmingham at Easter, they may actually help....maybe...probably not though.

Hello, is it ok for me to sneak in?

I have just found this thread, as recommended by Sparkle on my thread asking for advice about ds2.

I'm not sure I belong here really, as we haven't even got as far as the GPs yet and ds2 is only mildly affected - I think.

I have piezogenic papules [proud] although they aren't sore or itchy at all. I'd never especially thought about them till I started investigating EDS, they're just there.

Anyway, yesterday's appointment went mostly OK, new doctor is nice, actually listened, and told us what he was prepared to do (not get involved with the fainting, not get involved with the possible EDS, but would do his best to get the vomiting and tummy pain stopped). But the hospital admin is shocking - the referral letter from three weeks ago wasn't in her file, no-one had any paperwork from the conference meeting on Monday, doctor didn't know about that even .

But, new medication (omeprazole and movicol) for the next month, see how that goes, and we have the doctor's secretary's direct phone number and are to ring if there's no improvement in a few days, or if we are at all worried before the follow up appointment in three months. Partly also he doesn't want to order an endoscopy as that cant be done at that hospital, and needs us to go to a different one, and he would rather leave that to the rhuemy clinic to arrange if they feel the need to (budgets anyone?)

The main thing is that DD is happy with him, we no longer need to see rubbish paed (who we bumped into in the corridor - he wished DD "all the best for the future", she glared at him ), and it's only 7 weeks till the clinic appointment. Plus she's not being sick at the moment and has gone back to school today, complete with crutches (will need to take her to minor injuries I think to get her foot looked at as she still can't bear weight on it, and the bruising is looking quite horrid).

Thanks for all the hand holding throughout this everyone!

Glad to hear you have made progress Midnight. Well done you for pushing for another appointment, it's a shame you had to do it but hopefully it sounds like you have a better outcome. Movicol is great, takes a couple of days to work and when used in conjunction with the omeprazole, it helps keep their digestive systems working. DS has had years of digestive problems but we have been on both medications for a year now and it seems to be working, I hope it works for you daughter too.

Welcome Moose - our DS has an unofficial diagnosis from various nurses and teachers but no official diagnosis either. We start physio tomorrow though so I'm hopeful that I can ask the physio on the best way for a dx.

DS has been very upset over pains in his ankles yesterday. It's a new pain, and he has good fitting shoes so we gave some paracetamol and I gave him some basic massage on his ankles/legs.

Sparkle - sorry to hear you DS is in pain too, is night time incontinence another sign? I should do more reading up on the different types of hypermobility and the symptoms when I get the time HA! hope you are feeling better now too.

Bizzey - congratulations on getting your DS into the school of your choice.

Hi again everyone - Sparkle you'll probably wished you hadn't asked, but for once have a spare 30 seconds.........!!

Still Home Ed-ing as can't find a school to take our son - too many 'co-morbid conditions' for mainstream to cope with despite 'inclusion' - but we all know this means nothing. All our special schools are either ASD or physical, but only specialise in profound cases. Have a band D, but they only want the money - not the child as they know they need all this money plus extra. There is one school, but we'll have to go to tribunal to get there - so that's next, as its £5,547 a term..........

Have had the fun of EDS Diagnostics at Northwick Park with Prof Pope, plus skin cells taken as he has too many other indicators to be 'just type 3' - all very well being an interesting case, but not so much fun when you live with it! Now 'officially' 8 out of 9 on beighton, with dx from Profs Pope and Grahame.
Have been dx with autonomic nervous system dysfunction - POTS and vasovagual faints - at Evelina.

Just recently back from GOSH and physio rehab, having done this 18 months ago, and been told that his muscles aren't growing enough and we're not maintaining strength despite doing all the physio at home.

Been to Evelina to have uerodynamics - result being that he has bladder dysfunction and now will need catheters every 2 hours plus meds to manage, for the rest of his life.

Plus the usual subluxes every day and going into shock each night due to the pain etc, etc.... Oh and the delight that was finally doing the DLA form that I had put off as it is so hidious to fill out with all the 'how many times a day, how many minutes, how many hours, how often', and then the same question asked dozens of times in a different way to catch you out.

It's all so bloody depressing isn't it, and I know that we are all in the same boat, and everybody here has the same worries, concerns and lack of support. It's crazy.

It's been a tough year and we're still not finished - back to GOSH next week for neurological investigations, it just zaps your will to live to be honest, but you put 'the face' on and just get through it. I get to the point when I just can't bear to look at the EDS sites or this one, just because I understand so well what everyone is going through, and it it gets a bit much. We all need understanding and support, and you are all great at this, I just wish the various 'systems' were the same.

Love and hugs to everyone xx

Hi

Sparkle sorry to read ds has more pain .Wish there get a spinal team involed at least.

Cars that what PRoffesor Pope said with ds3 .Were of to GOsh in April for rehab clinic and not impressed so far , They have not informed anyone of dates so good job i phoned Them so i know.As letters not going out for a week or two .Talk about last minute

But I dont think rehab will offer what the expect as ds not fitting normal boundries

Cars if ds needing catherters google Mitrofanoff procedure .Im waiting to have this done as makes cthing easier

Ds seems better today, which is good, and am doing a star chart for "trying" to reduce the melt downs at school, he seems much happier, but am having to do working towards a wii game and extra nightmare trips to the play park to keep it going...it is just not sustainable really, so I am going to ring his clinical psych tomorrow, he has his next appt week after next, and fiull her in on what is going on, and see if I can get some advice.

reindeer - my ds's urinary incontinence and sometime fecal incontinecne is related to his neck. He regularly subluxes and has even dislocated vertebrea c2 and c3 in his cervical spine. When his happens his muscles go into spasm and the vertebrae and the muscles put pressure on the spinal column, he then gets the incontinence, and cold numb feet, loss of strength in his hands and upper bosy etc. It is very scary, and very dangerous, except for rheumie who is in denial! Urinary incontinence and fecal incotnience can happen because of eds though, that collegen gets everywhere.

Midnight- that sounds positive really. I know you have no answers, but having a phone number which is direct, and not having to go through a&e again...hopefully, is very positive. Maybe if the eds dx is made, he will be able to be even more proactive. Budgets get us every time though don't they! I would get her ankle looked at, could it have subluxed and not reduced (gone back) yet?

Mycars - you have been having a time of it! (and I don't regret asking ) When will you get the results from the skin cell samples? I know it is tough to deal with it all, plus the drs being so crap ('cuse language ) but you can always come on here and vent!

Dh is being blardy moody, and rather like a child, bit fed up as quite frankly have enough to deal with!

cars - not sure if he has piezogenic papules, going to check himtonight as he is only every examined sitting down but that is not what is causing the problem in his toes..imagine bright pink, with blue patches, swollen, and slightly hot little toes joints both sides similtaneously, the rheumie says it is vascular...and it looks like it, like the veins and or arteries in his little toes are compromised and have leaked into his toe and foot, including under his toe nails which streaked with blood.

cars what day/s you up at GOSH next week? We're seeing psychologist on Tuesday - if you fancy a ? - DS3 not DS1 though. I'm keeping my fingers crossed that my neighbour will do school pick up for me and give them tea as DH will be out of the country for a while again