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.

THC We have a geneticist who mentioned the DDD thing. She said at the appointment that she would get us on it but then in the follow up letter she said that we needed to see the neurologist first. Maybe she meant that by the time the DDD thing starts we will have seen the neurologist.

Sparkle hope you're ok.

Moose enjoy legoland. We went last year and it was brilliant.

Just wondering if anyone else found that when their dc's get tired are they just sleepy or do they go through a monster stage? When DS2 gets tired he just wants to lie on the sofa and watch tv but if he is encouraged to push himself when he is tired he turns into a destroying monster with a temper if things don't go his own way. I don't normally let him get to this stage but with his birthday being on friday and DS1 and DH encouraging him to open pressies and play with balloons when what he needed was a day of chilling and an early night the monster was unleashed. He only did half a day at preschool on thursday but he was still like that. DS1 tends to be a monster when he is tired but he doesn't have that tired and floppy stage in between like DS2 does.

Having my usual panic that I do when he's tired about how he'll cope with school and getting the usual response of he'll be fine from people who know nothing about EDS. We now have 2 occupational therapists and still no appointment with wheelchair services.

elliejjinty OH YES...!!!! I know excactly what you mean !!! bed time has a very small window from ready to settle with book and sleep OR an absolute hyper- monster where i know it has gone bejond "telling him off"

He can come home from school exhausted and any thing can set him off in a tantrum...he storms off to his room and stays there....then a while later comes down as if nothing has happened !!....till someone says the wrong thing to him ...useually me by saying "i think you need an early night tonight"...and then it starts again...."no i am not!!"and lots more shouting and storming off !!

I wonder if this wave of tireness they get is just to over welming for them to cope with

Phew, glad it's not just DS2. I always thought physically disabled children were smiley placid children until I had DS2 who shouts "I is not a baby, I is 4" at random strangers who see the double buggy and say something about me having 2 babies.

The tiredness must be so hard for them to cope with. DS2 is meant to be going part time for most if not all of his reception year although nothing has been formally decided yet.

I think very few adults who live solely in the NT world realise that for some DC they have to put in twice (or more) as much effort to do the same activity - whether it be writing, PE or just sitting still. Its no wonder they get shattered so easily.
Even as a parent I sometimes forget how much effort DS1 puts in to do some activities - but I still expect the same as his NT brother - so I'm just as bad

Sorry guys, sorry have been awol. Everything is ok. Ds is having really bad urinary incontinence issues again, twice on Friday, 3 times on Saturday, five times yesterday and once before school this morning...don't know anymore yet! have told him to do double voiding and go every hour to reduce likelyhood of it happening. He hasn't got really bad neck pain though, although C1 is very tender especially on the right hand side, his neck movments are reduced on the left hand side, and his feet are very cold, like blocks of ice, which is very unusual for him. He is quite chipper though, so sent him in and we will see, and comtemplating taking him to gp, so they can do the reflex tests etc....but not taking him to hospital, what is the point!
Poorly dog update! Nikki doggie developed progressive retinal atrophy about 4 years ago, she went blind quite quickly, then as a result she developed cataracts. All potter on for a while, then about two weeks ago the cataracts finally blocked the drainage ducts of the eye, shedeveloped and infection and bleeding into the eye, then glaucoma as a result, despite everything they could throw at it, the glaurcoma got worse, she was in terrible pain, so they removed the eye about 10 days ago. It was horrific, such pain, awful awful awful. She is looking much better now, stcitches out on friday hopefully, then she can be our pirate dog!

Moosemama I am [shocked] at last years teacher, and the fact that the senco obviously didn't report him/her for such unprofessional behaviour to the Head!!! Shocking, that should never happen. I am not hopeful for you in terms of them understanding ds....I have been there so I know how frustrating and it is. It is not good enough,they have a duty of care, and they should listen to you as a parent. Have you tried giving them a copy of the US guide for schools I posted a link to, maybe that would make them realsie they havbe to take notice! Hope your dog is ok and they know more about it.....frequent wee trips or accidents is not much fun for anyone!
Glad to hear my anti boys pro horse plan worked for you Congrats on 25 years, dh and I are 19 years this Nov....has been a slog at times but glad we are here iyswim

Bizzey - ds' bloods ahave always come back normal. I have some idiocyncracies in mine....I always come up with a postive PANCA, ANCA result which indictate inflamation, but always have normal sedimentation rates, which indicate no inflamation. As far as I know my coags are always normal. I would do just a little googling, re the different blolod results, what a normal score is, and connections with connective tissue disorders and arthritis....but that is just me.

THC I am glad they are being procative about ds2, maybe it is because info about ds3 has fed through the nhs system!!!!!! About time. So are you going to genetics at Cambridge then?

Simpson - sorry you have to wait again for a proper assessment! I have a freind who is a physio manager, and she says 45 mins minimum is needed for the first session....which always tallys with what has happened for my ds. It is good that she has recognised the hypermobility though. I would still push for a rheumatology referral too. Flat feet and over pronating feet and supinating feet are certainly not uncommon in eds/hypermobility. My ds has over pronating and some arch collapse. He is breaking in new orthtic lifts and arch supports as we speak! We have never seena an OT by the way, have another friend who is a community OT, and she always says she has nothing to offer ds and not enough knowledge to be helpful. Now is the right time to mention an IEP to school. In theory she doesn't need an IEP unless she has issues with learning, my ds isn't even on the sen register. What she needs is a health plan deailing the condition, she specific needs etc and a care plan, so everyone know what to do if she has an emergency. Having said that there is no worry about and IEP if that is the way the school want to go and you are comfortable with it. Her needs are covered by discrimination legistlation and National Curriculum access legislation though, not SEN legislation. Moosemama think what they paed siad is a bit rubbish, they look at arch stability when the foot is at rest more than they do when stepping.....ask the gp for a referral to podiitrist

THC - Florida !!! They are so going to love that!

Ellie - ds gets very floppy and tearful when he is tired, which is a lot at the moment. Tiredness is a real unseen (by medics and school) disability of this condition.

Auntevil _ I too find myself saying things to ds, which I should know better!! ike please use your knife and fork, or sit up straight....then catch myself and have to back track and apologise. Poor ds

......and Sparkle wins the prize for the longest post!

sparkle Glad to have you back on board again !! Cant type much as i have got to rinse hair dye out now or i will end up a "strange" colour...Got a big event this Saturday and green hair is soooo going to clash with my outfit !!!!!!!

What is happening on Saturday? Hope your hair is not green!!!

Hi, we're back .... and finally dried out!

Legoland was good, but very wet. Fortunately we were all armed with good quality raincoats with rainponchos over the top, so it didn't bother us at all. The hotel screwed up a couple of times, no prize in the safe for the boys' treasure hunt, ds1's coeliac meal not there despite being pre-arranged and then the head chef suggested he had the tagliatelle! They also lost our suitcase when we were ready to leave. BUT the dcs had a blast, ds1 coped well with the 4d cinema and ds2 managed to cope with all the walking (although is obviously exhausted) so that's what matters really.

Sadly, ds1 coped less well with having to leave and spent the whole journey back all the whole time before school this morning sobbing his heart out.

Sparkle, is your dog a collie by any chance? Poor girl, sounds like one of the worst cases of PRA I've ever heard of. Hope she recovers well from her op. It seems like such a drastic step, but has to be worth it to stop all that pain and distress.

My bloods are always a bit odd as well. I always have raised ESR and white cells but no sign of infection.

Thanks for the heads up about arch stability - I will follow that up.

Ellie, ds2 is the sweetest natured, most patient boy - honestly such a sweetheart, but when he's tired he's a force to be reckoned with. He is like a completely different child when he's exhausted.

Moosemama....sounds a fanastic time, despite the rain. Bless ds1 for sobbing all the way home. He must have had a great time. Think that Head Chef must have a really really interesting understanding of coeliac's disease

Nikki dog is a chocolate lab! Destined for greatness....I mean destined to get everything coming! Her parents were supposedly screen for PRA .....someone was a greedy breeder I think.

Yes, er, ahem ... he said he would take dh and ds1 around and talk them through everything that was coeliac safe, then pointed out everything that had pastry or pasta in it! In the end a lovely waitress whose sister has coeliacs offered to help and got the kitchens to make him a stir fry in a clean pan. He was very disappointed though, as when we phoned to arrange it, we spoke to the restaurant directly and they took his name, dietary requirements and anything he doesn't like and were told he has autism. They said they'd prepare something specially so he didn't feel left out, because his siblings would be able to use the children's all you can eat buffet, but they literally had nothing.

Ah, a chocolate lab. I've known three other dogs with PRA over the past few years and all three were border collies. It's so difficult to be certain about health testing, when there's no standard system - you can ask and even look at the paperwork - but there's no way of knowing whether or not it's genuine. I think the KC is managing some results - eg hip dysplasia - through their offices these days and are building up a database of the most common genetic illnesses for each breed, so hopefully it will get easier.

Chocolate lab - ditto. No wonder mine was sending the vibes out

I was just looking on the KC site.....I see her breeder is accredited, but the sire (who comes from the biggest beeder in the west midlands) doesnot appear on kc site.....

at choccie vibes! She has spent the morning lying in the sun on the terrace....she is so much better, if I had a working camera I would stick up a photo of pirate dog!

There was a chocolate lab at the puppy classes I went to with my Soft Coated Wheaten Terrier many moons ago. Naughtiest pup on the block he was, but soooo ridiculously cute you could forgive him anything!

Well, I have just got back from collecting the boys and been basically told by ds2's teacher that they don't want to have a meeting with me, because they have no concerns about him. Apparently they've already got together to discuss this and decided he's fine. So, ended up trying to explain hypermobility to the teacher in the playground.

Why am I so hopeless at confrontation?

Had a chat with ds2 when we got in and he said the maths teacher said the week before the holidays that some of his class are moving up to the next set - but not specifically who. This is where he got the idea that he is moving up and got all stressed about it, as they moved him up a year ago to try a level 3 SAT paper, then moved him down again the next day. He's been convinced ever since that it was because he's simply not good enough and it's really knocked his confidence. In actual fact, the day they moved him up he had a cough, temperature and was desperate for the toilet, but they wouldn't let him go and shouted at him when he asked (he doesn't handle shouting well, especially off teachers etc it makes him really shaky and panicky).

Not sure what my next move should be. Two options I suppose - go up a level and complain that I was denied the chance to speak to them in private when I specifically asked for a meeting OR go back and stand my ground (not hopeful I am brave enough to do that face to face though and haven't helped myself by being crap useless and compliant this afternoon).

I think you need to go and have a conversation with the Head teacher, explain what has happened. Ask for a meeting with Head, Senco, class teacher and school nurse (who will be useless but at least will stress the point that this is a medical condition and not up to the "teachers" to decide their is no problem!!!!!!) I could help you draft a letter for the Head if it would help, I don't mind being confrontational when stupid attitudes like this get my back up! I get flustered at the drs!

Couldn't help myself, I pmed you with a draft letter.....just wanted to give you some options and help you to feel supported, not wanting to interfere!

moose I really feel for you..school really dont understand how tiring H/M is in a child and if your ds is like mine which i think he is...age/quiet/demure/nervous/shy...they can quite easily be"lost" in the school system.

I am very lucky to have a wonderful SENCO and school and i think you do need an app with all who sparkle said to explain it to them.....It dosen't need to be confrontational just information of your sons condition/situation ..remember you know more about it than them .BTW sparkle would LOVE to know what was in the letter !!!!!!!!.

I haven't got green hair but did go a bit overboard on how many strands of hair i pulled through the high-lighting cap [oops] when will i ever learn ...LESS IS BEST !!!!!1

It is ds 3(dx) 1st Holy Communion on Saturday so it will be a big family affair....i keep checking weather forcast. Ds1 had tonsolitis last week and this morning ds2 woke up with a sore throat !!!! I think i will keep ds3 isolated till sat so he does not catch any thing!!

bizzey Just imagining your hair if it had of been green, at 1st Holy Communion
moose - ditto the others - SENco, HT a must. Also find out who is governor for H&S, safeguarding, child welfare or whatever title your school gives it, and copy letters to them. You don't need to get heavy handed, you can send them a copy for their information. It just sets the tone that your DSs welfare is a whole school matter - not just the class teacher - and that you take information sharing seriously.
Soft coated wheaten terrier sounds gorgeous btw - I always used to have terriers, so I'm finding my lab a little ...... well, lets just say she's not mensa material

I have two labs, one choccie (10 yrs old today!) and one black (nearly 2), the choccie is in fact not blessed with the old brain cells, but she is lovely, cuddly, and endlessly loyal!

I am glad your hair isn't green bizzey, if a little too well high lighted! Wow 1st Holy Communion...that must be a big thing....

Ds at home today with very severe neck pain....poor kid.

sparkle - and I bet your DS can loll all over your labs without them even flinching. Only thing mine does is raise her eyebrows when he talks - but then my DS is very loud.
In fact I think dogs are very therapeutic. My 3DS and the dog often have 'group hugs' - I think it takes her back to her puppy days with her brothers and sisters

Thank you Sparkle, haven't read the letter, as only just read your post, but will go and read it straight away.

My blooming laptop died this morning. It's been being temperamental for a couple of weeks, refusing to switch on etc, then this morning it just won't switch on at all. Am on dh's laptop now and I really don't like it.

I guess I'm hedgey about doing anything too official with the school until I have more from the docs. His teacher said pointedly yesterday to "let me know when you have something official on paper", so I have a feeling I'm not going to get taken seriously until I have something in writing from the paed.

Dh said we should at the very least confirm the conversations we've had with his teacher in writing, to start a paper trail if nothing else. I do feel like I want to take it further, but need to handle it carefully, bearing in mind the historical bad blood between me and one of the teachers. I am already persona-non-grata at the school after fighting for years to get ds1's issues recognised and supported and unfortunately, dd is due to start her 8 years at the school come September this year.

Iirc, ds1's lovely teacher - who is also an Assistant HT is acting head for KS2, so I am going to go and see her when I do the pick up this afternoon and ask her how I should proceed. She's probably one of only two (maybe three) teachers at the school I trust.

He told me this morning that he had agonising cramps in maths yesterday but was too scared to tell the teacher, so just sat there in extreme pain, as he knew that she would tell him off if he put his hand up, as she'd already told another child off for it. He also started to cry and said that he's even more scared of the other maths teacher and daren't even put his hand up in her lessons.

All this isn't being helped by the fact that I've crashed big time since coming back after the weekend and am not really good for anything other than curling up on the sofa. Great timing - as usual.

Just been doing hand-holding and virtual hugs with DD1 who is going to speak to her GP about joint pain - poor thing is incredibly stressed at the moment - first year uni exams in a couple of weeks; a brand of the pill which doesn't seem to be agreeing with her; white coat syndrome, so the GP sent her home the other week with instructions to test her BP each day NOT in the medical centre; and fairly constant pain in her ankles, knees, hips, elbows and lower back, which has been going on for so long she can't judge how painful it is on a scale of 1-10.

Fingers crossed the GP can see through her "I'm OK really, it's just I'm finding the work a bit hard at the moment" . I wish I was there with her to do the talking . I hate trying to speak to her on the phone when she's in floods of tears (because she left her list of BP measurements in her room, and had to send her BF back to get them). I feel so helpless - because she's 18 and therefore an adult, and i'm 2.5 hours away, there's very little i can do to make it better. aaaaarrrrrrgggggghhhhhh!!!!!

And breathe...

moosemama - any chance of finding a different school? DD2s school have been really helpful, and I know DD3s would be as well, whereas DD1s primary would have been dreadful.

Sorry for the double post.

Auntevil - sadly I don't have my Wheaten girly anymore, we lost her just before Christmas 2010. They are cracking dogs though - if a tad high maintenance in the coat department. She was a super dog, we did heelwork to music and a bit of agility and obedience together and she had her gold good citizen award.

Forgot in my other post, but my Mum has managed to remember some of the details of my own paediatric joint/bone appointments. She said that she took me initially when I was a toddler because I wasn't walking properly and was told she was a fussy mother and I would grow out of it. Then she took me again when I was a bit older and I was referred for shoe inserts because of my flatter than flat feet, but then they realised there was more to it and did some more investigations.

Apparently they were initially planning to put me in one of those double hip cast things that toddlers sometimes have to wear due to hip problems, but then another paed suggested surgery. They were planning to break both thigh bones and reset them! They were also going to realign my lower leg bones - so that's why I remember them drawing the little stick men running up and down my legs - they were planning incisions from hip to knee and knee to ankle on both legs. I was booked in for arthroscopy for them to plan the op, but was terrified and talked them out of it, saying it didn't hurt anymore (blatantly not true). Then they had another meeting where they decided that because I was a girl and because I said I wasn't having problems anymore, they wouldn't go ahead, because of the extent of the scarring I would be left with .. and that was the end of it really.

So, do I now contact the Paed with that information? Will it help him to work out what's going on with ds - or will they get what they need from his xrays? He's also been complaining of neckpain constantly since last week - worse since the Legoland rides, but he told the paed his neck never hurts. He now says it does hurt regularly, but he'd forgotten.

Finally, Sparkle - could you possibly point me in the direction of that information leaflet again? Is it on this thread somewhere - I downloaded a copy - but of course it's on my laptop, which now won't wake up.

Right, off to read your letter.

Midnight, your poor dd. It's hard enough coping with everything she has to deal with, without being away from home and Mum. It must be so hard on you as well, not being able to be there. (hug)

No chance of changing schools I'm afraid - there are only three and they're all massively oversubscribed. I think the school will come round eventually. It took a while - and a fight with ds1 - but they are fantastic with him now. It just makes me that they can't/won't see that I was right all the way down the line with ds1, so they should perhaps try trusting me on this with ds2.