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.

It is such a palaver getting into GOSH for this intensive week!

Flaming....I am [shocked] by your landlord, lets hope the new build comes in on schedule, then you can wave him good bye! Will it be local to where you are, and work with the schools?

Ds is doing very well at school. We had parents evening this week, and both dc are doing well and well settled. Ds made his PDSS get close to tears yesterday because of the effort and the improvement in his balance and control. We saw the phsyio yesterday too, who was supposed to give him specific exercises for his shoulders but she decided not to as the school are doing so well with supporting all his physical needs and all the exercises and keeping him as active as possible, she deceided enough was enough for now. He had his blood pressures done yesterday, and he does have pretty low blood pressure, not dnagerously so but definitely enough to cause him the fainting, dizziness profuse sweating, so EDS strikes again, looks like he will develop neurally mediated hypotension like me.

Sparkle - the fainting/dizzy thing - my son gets this too, we are being looked at for POTS, apparently it can run alongside EDS, not that I know a huge amount about it - but am trying to find out more. Has anyone mentioned this to you at all?
Flaming - Ellie is lovely - have you met her yet? I think that sometimes the messages get missed - I'd keep trying - I don't worry about being a pain any more - someone once said 'the creaky door gets oiled first', and with an SEN child it has become my mantra of late!!

No cars not met her yet .I shall wait and see what i think of it all have horrible feeling there may be issues about ds attending without me due to the fact not one of the physios can sign AND becuase of the GDD he will struggle to follow instrcutions in a group though he is 6 he is nearer to 3/4 devlopmental wise .Will give them couple days and chase again .

sparkle dd will need to change schools but ds2 no and ds3 is ok as he has school transport.Not to far about 6 miles and I can not wait

.Though he is meant to be going to another s&l unit for year 3 .It is now a possibility that since they realise PD are not going to go away or be cured or even managed to a realistic level like his peers and becuase of the fact though his speech has improved its still a long way from being well anywhere near level with his peers within a speech unit .We may end up transferring to a ss for dc with P.

d

How do you feel about the prospect of a pd sschool? I have to say the staff that come and work with ds from the pdss are based at a pd ss and they are fantastic, and when we go there the resources are fantastic, having said that it is a big deal to enter that system. I can't help feeling that with his needs being so complex it might be the right thing

I was dx with POTs when I was young, they have only really changed the dx to neurally mediated hypotension due to the very fast resting pulse rate. They can't officially dx children with nmh though due to nature of the dx tests. He definitiely has postural hypotension though, as do I. There is very little out there though, as in the UK they couldn't care less about it because it is not hypertension, and they are stuck ion that. In German and other European countries, they treat hypotension just as seriously as hypertension. The only advbice can offer if warn school about the affects of a hot stuffy room, profuse sweating, dizziness and fainting, so they can keep water in take up, and react appropriately if your ds starts to get a bit wobbly. My ds' school handle it quite well, but over the summer it has been a real problem. I feel positively ill in a warm environment, I would so much rather wear lots of layers and be in a cool/cold room.

to be honest sparkle im all for it and made it clear if we dont get or it does not work for ds3 in the speech unit then that is only option I would consider .It is a fab school with fantastic faclites and lolon plus point i would never have to worry about access ,

Sparkle my normal Bp is 10o over 50 which egets people rather frantic when ever have it took .Though to be fair I do not suffer any side effects with it so declined medication .

Ds3 seems to have inhertied it but he does get pale and dizzy

That is what my normal blood pressure is too, sometimes a little lower 90/50, my resting pulse rate is over 100. Ds was 98/50 yesterday, which is borderline, it should be 120/60 ish for someone of his age and weight. We will have to see what the cardiac team say. I don't have any meds either, betablockers do not seem like a good idea to me. I just have to be careful with standing, and hot rooms etc.

The ss sounds good, like ds' outreach one. I am so impressed with all the staff.

im fortunat no side effects and in our family is defintley genetic .But hospitals do not like as means when your ill you have nowhere to drop to

My dad had it too, and probably got eds from him.....

bump

twirls in name im back

Sigh ok i am not impressed with GOSH at all .Seems Ds has finally been added to the waiting list no date yet .Sue mallard never returns a call at all .No feed back from her about what she found from ds3 when she examined him .No advice what to do in the meantime not even a return call .I give up chasing people i really do .

Not even any letter about the appointm,ent when they examined him .I am up to here of having to chase people not even our local team have seen him for ages and am always having to chase them for feed back .They were meant to contact school to arrange doing some of his physio in school as he is having to get up to early and is tired at school k,but nope

so no clue wtf going on am tired of doing it all really am .I have a tired grumpy little boy who hates the physio were doing ( though sue said its not right program for him needs tweaking hence coming in ) .

#Am i wront to say feck it and stop waking ds up at 5.30 of a morning

THC - poor you - I know how you feel - we shouldn't have to, but it seems it's the only way - doesn't make it right though. We came back from GOSH yesterday, only to have to chase appts at the Evelina, you just bounce from one chase to the next!
GOSH outsource their letters, they take months to come through - I gave up waiting for them as we have also had ones that were 'lost' and had to be rewritten. The physio is a challenge isn't it? My son hates it, it's boring, and 30 reps take an age to get through, plus the need to increase weights. He is getting a lot of pain at the moment - we see a pain clinic - but I find it really hard to do visualisation and relaxation with a child who is in so much pain he vommits. Getting him to go to his 'happy place' is a joke when he is beside himself with the pain, and the need to 'get rid of it now, Mummy, please'. Right now we don't have a school isssue, as we Home Ed, but it is looming as I know that as much as we love Home Ed, I can't do this forever, and we will need to find a school again. It just has to be better than the last one. It's a wonder any of us cope - I'm just glad to have others who understand, and don't think you're moaning - three cheers for all of us. I know it would be a harder job without you all! xx

Hi HTC, you know, I would be tempted to just stop the physio and let him sleep in. Did they give you any idea which exercises were good, and which needed "tweaking" at GOSH? If so, or if you have a good idea yourself, you could at least reduce the programme to cut out the less useful ones. I know you are sick of chasing but I would stick a firework up the arse ('cus me everyone) of the LA and demand support physio for physio in school. Does the school not have anyone on site who could do it, because you could bypass the doctors and organise it through the school? I asked ds' physio directly to come to school to have a meeting with TA, and I took TA to ds' physio appointments so he could take over the majority of it. It has been a godsend.

The fighting for everything is horendous isn't it.

We did not do any this morning he was worn out he just would not wake up begged to be allowed to sleep he is 6 at that age kids do not beg for sleep unless really tired.finally got hi8m up at 6.45 in time for breakfast wash and dress then out the house for 7.30 all of a rush .

Cards ds would not have the understanding how to go a happy place so that be a non starter for him .He never complains he just gets slower and slower then just falls over and crys all the time .walk wise he can do 200 m at his pace ( very slow) and after that his gait is completley shot .

Sparkle nope school havbe no one his physio is not allowe din as its out of area and school dont want to ask the Pd team to come in either they reckon they are coping .but as they go nowhere and he is in single class and small playground is ok next year its going to go tits up i can see it .That 10 minute walk will be nearer 40 mins and lol chance of swimming after that zilch let alone being able to dress and undress as its affected his arms to.

He does not have his own TA as he is in speech unit so 10dc one teacher and a Ta( only 7 kids in there) plus a salt 4 days a week .Why next year be intresting as there be 10dc plus ta in morning then he be in ms in afternoon .will be needing tie his staement even better .

No one knows what to do as he really doe snot fit a box .His speech is not good enough for Ms he needs daily therpahy and a specialist language faclity .

Not a mld candiate as is bright and yet again his speech a problem

But in a speech unit his other problems his Pd really do show with special seating and cultery inability to grip a pen etc .

soyy think im just tired of fighting been one thing after another and thought that finally GOSH picked him up be differnt as everyone raved about it ad well sadly not it seems .

Have heard back today that they are unsure about ds3 doing teh rehab as they said its not quite so straightforward as yes his EDs is unsural but the gentics still reckon theres a chromsome or neuro muscular disorder so wer eback up in the air with no one acccepting responsoability for him

Oh THC this is just too much...I am so sorry, just when you thought you were moving forwards. Damn GSH I really thought you were goling to get answers, not more questions.

It sounds like the S&L unit are not coping at all, and it is not just up to them whether PD get involved. You can get them in, I didn';t even know they service existed until someone on the LA SEN team tiold me. So here is what I would do if I were you, I would ring your LA, and ask to be put through to the SEN team, explain ds' situation, explain he needs a PD assessment for outreach support. They will then send forms to the head teacher of ds' school, and you will need to go in to sign them, the headteacher should not be able to stop them coming in. This will mean PD will do an independent assessment of how school is meeting ds' needs, and you will get to meet them to explain issues around physio, Speech, special adaptations needed. They will be able to help you with the statementing process if that is what you want, and be able to get him into an appropriate pd school next year. That is how it worked for ds here, I know everywhere is different, but PDSS have been the only fanastic bit, and got ds into this fab school, and got dd1 in it too.

sparkle here you cant it seems the school have to request them to come in and they reckon theey are coping but it comes down to money they are aware that it will cost in terms of what he needs and they are only funded for speech .

But will push it becuase ds could be at the next school for 3 years

That sounds awful, it seems like we have to fight for anything our dc's get. Are you all glad it's half term or not? I'm looking forward to a week of no school run and letting ds2 get some rest. DS2 has refused to walk at all today, he is so tired.

Yep half term here now and sorely needed all round.some lazy pj days coming up

Another one here that is very glad that it's half term! Anyone else notice a downwards slide in behaviour as the holidays approach, as I know we do. Think it's the pain and general exhaustion.

Dd dislocated her shoulder about 10 days ago, she was desperate to go into school as a TV company has been filming there this week. One of the actors asked dd if she was a teacher because she was so tall and she was sat on a chair rather than on the floor with the rest of the class, so dd told them why.

Hope everyone has a quiet-ish weekend.

im so glad its half term i literally have not stopped the last few weeks and we are all exhausted, hopefully will all get a rest for a few days!

hope everybody doing ok i will catch up properly again later

Is anyone else difficult to get blood from? Just wondering as I have had attempts 7, 8, 9 and 10 at getting blood out today and it hasn't worked. DS2 is bad as well so I was wondering if it was linked to the hypermobility or just random. The nurse said it shouldn't be that difficult which wasn't very helpful.

elliejjtiny - I have horrible veins. At the end of the rheumatologist appointment when I got my BJHS diagnosis, the rheumatologist wanted me to have some more blood tests done to be absolutely sure my symptoms were nothing to do with RA. I did try to explain to the nurse that my veins were useless but she took umbridge, thinking i was telling her how to do her job. In the end, she ended up with me warming my hands in hot water so she could use the vein I'd suggested in the first place, on the back of my hand. It always bruises, but at least it usually works. All my other accessible veins are either badly scarred from previous bodge ups or collapse or split as soon as even the tiniest needle gets into them.

By the way - I'd had enough of half term by 9am today [hgrin]

DS1 has been driving me potty and bouncing off the walls and me and the furniture.... DS2 has been scattering everything all over the floor and constantly hand pulling, which my poor shoulder is not in the mood for, today.

I know the feeling about half term [hgrin]
I always think I'll get loads done with no school run to get in the way but my eldest 2 have scattered toys everywhere and DS2 has dismantled a lego helicopter. DS3 has chucked his dinner on the floor and I have piles of washing everywhere, some wet and some dry. I need the weather to be better tomorrow so I can dry the wet stuff. At least the tumble dryer is being fixed on wednesday.

ok have recovered my normal good nature think just sheer exhaustion and stress .We had no hot water/heating for 9 days now 12 more then my LL is back and he better fix it properly this time .

ellie it can make it more akwars but then again i was told red heads are hard to get blood from as well

Hope everyone is at least getting some rest over half term ,very very quiet one here .Though gave up on trying to keep on top of it today