Friday Night, Too tired for...

[Thecarrotcake]

Hope everyone has been well.

Just to let you know I've not gone AWOL but RL has been a bit too much recently and I just don't have any energy or fight left.

Anyway over to you and choccies are on the table.

Oops! Phone call in the middle of posting. Now I get what EDS is - and I typed the letters in the wrong order to boot!

Sparkle, I have them saying it would happen recorded on my dictaphone, but the report itself is literally just 4 sides of A4 in total, almost all of which are taken up with a title page, list of professionals involved and a circulation table. Hardly any actual report at all.

HI Moose, probs not a regular thing, he's in a special bed, my dad was in hospital so he took his space in the bed, we rearranged the room etc, though if I look for funding maybe I can get a bed for her house. Another thing is she lives in a house and we have a stairlift for him. So her house isn't ideal, but there could be ways round it!!

Carrot, at least the appointment is sooner rather than later. Hopefully they will be on the ball and at least get her comfortable while they decide what the problem is.

Devient, I really hope you can get something sorted, it sounds like it would do you the world of good.

No cupcake in it dev, must be someone else?

Moose that doesn't sound enough of a report if lots is the title page etc, you want to borrow my sharp poking stick?

I guess it's better sooner or later, I hate the waiting thing, but I panic at the too quick thing too!

Hello. Can I join in? I'm fairly new to MN (thanks to Riven) but not to SEN as my DS2 was DX with ASD 8 years ago and I now work as a 1 to 1 TA for another DC on the spectrum.

My week has been all school based, DS 2 got his secondary place confirmed, 3 lots of parents evenings ( ok) and my observation and appraisal at work ( also ok). DH gone out with the lads so just bedtime to get through, then chocolate and catching up on Being Human. Love those vampires.

While you are on the subject of EDS could somebody explain something to me please. If a child has hypermobile joints does this mean that they have hypermobility syndrome?

Right EDS is Ehlers Danlos Syndrome. There are several types of EDS, can't remember exactly 'cos they keep reorganising it! Only one type vascular type has a genetic test, someone of the EDS hypermobility thread I started a while back on here, has just had the test performed for their dc and told iut will take a year to get the results. Seems incredible, so don't know if that is the norm. Hypermobile type is the type that is most likely frankly, EDS is pretty rare, EDS vascular even more so. A history of hypermobility, parents and siblings with hypermobility, with or without skin involvement sounds like a pretty positive dx. EDS hypermobile type can only be dx by clinical dx, basically examination. They use the Beighton and Brighton Scales, if you google them you will see what they are, but even these are not actually that accurate, my ds for instance only comes out with a 3/9 on the Brighton scale, but has quite profound EDS. They may perform other tests, heart scans or MRI, xrays etc if they are worried about other conditions, but this is basically part of a differential dx, in other words you get a dx by ruling out other conditions like arthritis, lupus etc. A good rheumatologist should be able to pretty much tell you a dx on the appointment you have, they will take a history, draw a family tree with history, note the symptoms and flex the joints to gauge the range of movement. They may send for tests to rule other things out, but you should know by the end of the appointment. They may say it is Benign Joint Hypermobility Syndrome, which is beginning to be recognised as the same thing, but with less severity. Come and ask anything on the EDS thread here, and I and the others will help all we can.www.mumsnet.com/Talk/special_needs/1021063-EDS-Hypermobility

Ineedalife - there are two recognised hypermobility conditions, Benign Joint Hypermobility and EDS, current thinking is that they are probably the same thing. However of the few people who are hypermobile, most do not have any real problems, or indeed any problems at all.

Thankyou sparkle, that makes things clearer.
Dd3 sometimes complains of pain when she is walking a long way but I am not sure if that is just normal moaning, when I spoke to the GP he said I needed to phone OT because they had discharged her without providing any support but I think he is passing the buck.

She also has low muscle tone and poor shoulder stability although she has been working really hard doing her exercises and swimming 2 or 3 times a week.

Dd3 wants me to play on the wii but will pop back later.

Sparkle, you my dear are a star! I was seriously staying well away from google!

Gp got her to flat palms to the floor while standing, thumb to wrist on both hand, she wasn't that bendy at that bit, but then delighted in showing him how her thumb flips back to the top of her wrist and her toes flip back too much!
Her knees and elbows both go back and he commented that her skin was a bit too elastic !

Wow on the dx time though, mind I'm probably used to the ASD system having that take a good couple of years!

Just trying to take in what was said today really, but I have no doubt I'll be over on the Eds thread when I realise I have no idea!

Although the boys have hypermobility it is just in the joints and with ds1 only some joints.

I think you need to go back to the gp Ineedalife, and ask for a referral to Rheumatologist, OT can help, but you also need a dx and physiotherapy.

You can have hypermobility in only one joint, and you will still have it. It is genetic, but acn really vary in severity, for instance I got it from my dad, he was basially fine, my sister only has it in her knees, basically they just ache every now and then, I have it in every joint in my body to some degree and live in pain most of the time, and my ds, bless him has it much worse than me, although in some joints his actually hypermobility is not too bad he still has severe pain.

This is defo not like ASD, in terms of dx if you get to see a rheumatologist, especially if you have one who specialises in connective tissue disorders.

I will find the beighton and bright scale info and post you a link, so you don't have to scare yourself with google.

Sparkle I don't know why I was shocked that it was a rheumatologist that we were refered to, but I was like this , when gp said going to refer you, I thought it would just be pain control and physio.

Hi all, carrot and intothewest sorry to hear RL been crappy...

life in the sign household has sounded like the weather forcast this week, gales of snot and giving way to a strong front of anti-biotics, leaving in its wake a low front of feeling like a limp dish rag..

But, 'tum tiddy tum tum tum!!' (fanfare) I did not go to work. (this took a lot, to think, no I am ill, I am not going, I am allowed to be ill!. ONly day I was working away was Thurs, but I did not go..

Well done me. (I can feel the guilt goblins lurking, but am batting them off with the hot lemon bottle, .

Little sign has been a star, apart from being so cross today he bit me hard,and drew blood, but that one surprised us both! He looked like, 'what happened then?!'.

Will wave a hankie at you all from a safe hygenic distance, x

Thanks sparkle, got to tuck dd in bed, so I'll be back a bit later

Hello and welcome EllenJane, pull up a pew and grab some wine and chocolate.

Dh and I are madly trying to catch up with Being Human at the moment - we up to the return of Henrich (sp?) so have a couple of episodes to get through this weekend. Its actually the only thing we are watching on tv at the moment.

I found out I have hypermobile joints at my recent phsio appointment for my ankle. It made a lot of things suddenly fall into place for me, as I spent much of my youth with my hips and knees popping in and out of joint and had/have similar problems with my fingers. I was supposed to have an op on my hips and knees when I was 13, but talked them out of it by lying and saying they'd stopped popping. I was terrified of having a General Anaesthetic. Physio thought this was probably the cause of what happened when I fell, particularly as I didn;t trip or put my foot in a hole or anything, there was no obvious reason for my fall, my ankle just gave out underneath me. Given that revelation, I was surprised that the OT said ds1 had hypotonia by didn't mention hypermobility. Typically, I didn't think to ask her about it until after she'd circulated the amended report - doh!

Ds2 actually suffers a lot with pains in his feet and legs. In fact he's regularly in tears with it - is there any chance this could be related?

www.hypermobility.org/beighton.php

en.wikipedia.org/wiki/Hypermobility

www.hypermobility.org/diagnosis.php

Hypermobility.org is a good general first site to look at, not too scary and contributors with excellent credentials, including top guy Prof Grahame.

Got many more places I can point you to, so pm me, or find me on EDS thread when you are ready.

My is open now!

Waves back at sign from behind Michael Jackson style face mask.

Hope you are fully recovered soon.

Wow starlight this is progress, do you think they could tell my ds' school? No, probably too much to hope for!

Moosemamma, I would say definitely a chance it is related. How old is your ds2?

Starlight, I read your IEP thread in absolute awe. You have really whipped that school into shape - can you come and do ours now pleeaase!

sign waves back at moose,

and star great news that they have finally got the message.

sparkle hands sign some more tissues and a offers a glass of wine for medicinal purposes only!

Ds2 is 6, but has pretty much always complained of leg and foot pain, which of course the GPs palm off as growing pains.

He also suffers from the most god awful leg and foot cramps, but they are separate from the other pains.

The other thing is that his leg regularly just goes from under him when he is walking or running. He's only started to mention it very recently, but I'm now thinking this might explain all the accidents he had in nursery and reception year. He was forever - in their words, "tripping over nothing" and ending up with head injuries. Got to the point that the school secretary would be calling me 2-3 times a day (school policy to report every head injury to parents immediately) and saying "Hi - its me, guess what I'm calling for?". Thing is, its not a small school, they have over 400 pupils, yet she knew my phone number off by heart!

His dad had similar cramps as a child and obviously I now know I have hypermobility in my hands, hips, knees and ankles.

I feel awful now - I should have pushed to get him properly checked years ago. I just thought he was accident prone.