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.

Hi everyone, we have been away for a few days, to Wales. Back now, but eh kids still off as INSET. It has been lovely, no school runs, no homework,....also not a jot of physio whilst we have been away which is not good, but I thought he needed a break.

Hope everything is ok with everyone.

Hi sparkle hope you had a good holiday .We shall be doing the same come our holiday since ds3 will be swimming daily we shall sack any physio and just enjoy it

hope eveyone sback in school and kids are coping .

Ariane how are you know yours are not all school age bar .

I am no longer chasing them been told its 6 months or so and decided if thery cna not be fussed neither can I .

Now for my mad news i move into my new house the week before xmas so be case of late putting up my deocrations this year

Wow, that is good news though...we put up our decorations of xmas eve anyway (German tradition) although we have a few advent decorations beforehand.

Ds back at school, seems fine. I have got a copy of a referral letter referral ds to cardiologist for dx/ruling out mitral valve prolapse....I can't fault the paed she is good.

dd2 has just had her birthday and turned 3......how did that happen!!!!!!

When are you off on holiday THC?

Ariane haven't heard from you for a while...hope you are ok.

Wow we are on special needs editor's picks.....thanks mn!!

sparkle i dont even know hot to see sn top picks

ah see were normallu up early for 6th December xmas wise St. Nicholas' Day lol a german hangover for us too.

Am glad you been refered at leadt knowing one way or the other is better than wondering and the what ifs

Go on holidays 28-2 december then home and mad packing though not to much to pack but ekk wer ehave no flooring down as one cant afford and 2 chances of getting anyone to come measure order and git before xmas be low but i dont care

It sounds very exciting.....and who needs flooring eh!

I don't know if we are still on editiors picks, or even how to do a link for you if we were.....will try though.

I am having a dreadful time.....vent coming up.... got a letter from the hospital have leaky mitral valve (EDS) stikes again, and degeneration of the joints around the sternum in three places (oh yes that would be EDS ...AGAIN) plus other rubbish stuff hapopening too!
Dh had a reapply for his job.....again.....just before half term, and now it looks like he may be made redundant. He has only been in post six months, and was brought in by a very excellent and well respected boss (well respected in the national community and international community in their field). That boss has been made redundant basically because they new Head of the team doesn't like him, a political decsison, and dh is probably going to be suffering "cull by association". Dh is the only breadwinner, I have been out of work now for 6 years, as SATM and carer for ds. I have some really good teacher friends who have been applying for jobs locally for over 12 months and not even got an interview! We have some saivings but not enough to cover the mortgage, we have the house, but it is worth less now than we paid for it at the height of the market, and even if I managed to get a full time job it wouldn't cover the mortgage and basic living expenses....and on top of that dh is so vulnerable with his depression...... I have had a panic attack myself this morning just stressing about what I can do to hold this together.....so far can't think of a thing. and stressed emoticion needed mn!

www.mumsnet.com/special-needs/benefits/what-you-can-claim

See if that works...we are on the right hand side, well we were...who knows now.

I have completely wasted the day through stressing about redundancy, money, dh mental health, dc, ds and there are NO teaching jobs being advertised within 1 hours drive of home....

oh no sparkle fingers crossed thwy will realsie that need to push ds check up through.

I can only imagine how sick you are feeling with worry about dh and job.How soon will dh know if being made redunant and anychance his old boss may be able to help out if he has found another post

I think dh's old boss would certainly want to try and he has some influence and contacts....so we can hope!

Oh no Sparkle . I hope your DH either gets to keep his job or finds another one soon.

What kind of support do your children get at school? The portage worker has asked us to think about what DS2 will need but a lot will change in 10 months. He gets nothing at preschool although they keep an exta eye on him and phone me when he gets tired. I'm going to ask for handrails for all the steps but not sure what else he will need. Also not sure what the LEA will do for him, probably not very much.

Really hope is sorted Soon that worry you can do without you have enough on your plate

Ellie

Ds3 has a full statement but he has extra needs alongside the physical and had 1-1 at playschool

But yes handrails on stairs but also not in school with more than 2 steps when in playground has 1-1 to make sure ge is safe ,

Has a seating system , Ot program special cutlery

And the PD team have picked him up at last ready for transfer to juniors because they just realised how much will affect him

Not 1-1 in class did when was in ms but there's only 8 in his class and at least teacher and one TA in their plus most days speech therapist

Bad news dh has lost his job.

Ds has 1 to 1 support in mainstream school, which is dda compliant. He gets PDSS outreach support, physio in school, fine and gross motor skills support, mediaction given in school, chances for rest etc. He has wobble cushion for physio and sitting on, he uses neosmart or laptop for recording his work, or the 1 to 1 provides scribing. He has access to disabled toilet if he needs it, disabled parking space at the school.....I had to fight tooth and nail for this though, at previosu school he had nothing.

Am off the sob myself stupid now about how on earth we are going to manage.

Hi all,
Your messages and support system around deling with hypermobility is very valuable. Hypermobility is commonly an invisable condition where the associated problems (like pain and co ordination difficulties) are not readily acknowledged or understood by the general community. I think there is a huge role as parents to teach children to be fit and active to take care of their joints so the problems in later life can be limited. I currently have a lot of experience woring with teenagers and young adults with chronic pain associated with hypermobilty and I see that services in the NHS can be limited. If anyone needs specific support around physio issues in hypermobility I have just set up a private practice in the Orpington for children, teenagers and young adults. www.physiotherapy4kids.co.uk

oh no Sparkle am so sorry .

Has he got any reduncy and guessing xmas is the wrong time to be looking for teacher jobs

Oh Sparkle I'm so sorry.

He will have redundancy, although he is not sure what it will be yet, he has worked for the company for 11 years, in one form or another, so he should get something. Totally wrong time of year for teaching jobs..... I don't know what we are going to do. He is very down today.

Oh God what are we going to do.... I feel absolutely desperate today. Ds is complaining of cold numb feeling feet, not sure what to do about that either....I have lost perspective, is cold feet (in a child who is normally extremely warm) a sign of something more sinister....spinal pressure/damage is a real risk in ds for those who do not know his history. I can't think straight.

oh hugs am on yahoo if you need to vent/chat .

Cold feet could be indication of he is comeing down with a bug has he any worsening of other symptons that would make you think spinal , ( bladder/numbness tingling/weakness

Just numbness in them...I will come and find you on yahoo.

hello, sorry i have not been on for so long i have been suffering with constant migraines and am only just venturing out of the sunglasses/dark room stage, they were constant since last tuesday and at one point i wondered if i was dying the pain was so intense (silly i know ive had migraines before but these were hideoualy painful and the visual disturbance and pins and needles/vomiting etc with it was the worst ever). I think im over it now , well i hope so!

ds at home today he has another chest infection so we are just resting and im catching up with the housework.

I have some news for you all, it was a bit of a shock initially but iam pleased to tell you i am expecting baby number 4 ! Thats what a holiday with your ex does for you! but we have had a lot of long talks and hopefully (fingers crossed) with a lot of hard work we will be able to make things work somehow. I am 14 weeks and feeling really rubbish but iam sure itll pass soon i have had a few wobbles and panicked about a fourth c section but im trying to stay positive, positive that i will be ok and positive that finally i will actually be able to be in a relationship.It didnt work out before but iam hoping so much that things will be different this time as i dont want to do it on my own again .

Wow Ariane...congratulations. At 14 weeks you will be feeling better within a couple of weeks I hope. I hope the migraine doesn't come back, they are horrid aren't they. I had a 5 day one recently and I was at my wits end by the end. Hope your ex is giving you all the support you need, oops I supposed he is not your ex anymore, but your current

Big hugs to ds, hope he feels better soon.

wow Ariane congratulations and remember if need syou cna do it you done a fab job up to now

and ug i hate migranes

Congratulations Ariane that's great news. I hope the rubbish feeling ends soon and you start to bloom.