EDS Hypermobility 3

[elliejjtiny]

Not sure how to start this off so I'll just copy and paste sparkle's opening post from the last thread and hope I've spelt hypermobility right in my thread title .

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 dr ninis told me that asd and eds are closely linked babyjane67.

congrats on dc4 :)

my eldest is mildly eds 3
middle one eds 3 moderalty
youngest eds 3 badly

thanks mum
dd is hypermobile but not eds.i have read some info that says they are linked but will keep on reading i guess!

Thanks everyone. I currently have DS1 - mildly affected, DS2 - severely affected and DS3 - somewhere in between. It looks like DS4 is going to be like DS2 as he is extremely floppy and sleepy. The good thing is that he had a NG tube put in on the day he was born so he doesn't have the weight loss issues that DS2 and DS3 had.

ellie Big (belated ) congratulations hope all is going as well as you want .

Still going around in circles with different medics saying different things!!

Basicly physio discharged him ....pead wants him referred back due to pain

MRI done last week ...awaiting appointment for the results and blood and urine results ....these results are going to be a problem as they were done under 1 hospital that the other hospital do not have acess to ...so I will have to chase them up and make sure they all have the results .

On a good note DS had his nose cauterized last week ...so GOODBYE NOSE BLEEDS !!! Yeeeeh !! ENT tried palming me off with cream again ...I said NO ...His blood clotting notes were not available ...but he believed me ...and then saw the bulging vein and got it under way !!!

So pleased 1 thing has got sorted

No news yet on full OT assessment appointment ...whats the betting it will come through for when we are on holiday...and get put back !!!

No news yet on ICT support at school....SENCO said " we will wait and see what OT recomend " !

A feeding tube would have made a massive difference when DS2 was tiny - I wouldn't have had to syringe feed him.

They never noticed in the hospital because I'd left within 4 hrs of his birth.

It would have made a huge difference to my ds2 too. I was breastfeeding him but he was so sleepy he never fed enough. By the time the paed decided it was a good idea he was 5 months old and kept pulling it out. He was 11lb at 5 months and 14lb at a year old. This time I've said that I'd rather DS4 was tube fed than go through that nightmare again.

oh, why is it all such a hassle .

DD got her mew meds (two months worth), they're working well, Dr N's form said next appointment in two months. Meds are consultant prescribed only, and issued at hospital pharmacy. Hospital is about an hour away and costs best part of £20 to get to.

So, two months from last appointment is either 10th or 17th July. 10th is difficult but doable as we have lots of other stuff happening then; 17th is middle of work experience, but I hadn't heard from the hospital. So, I rang them yesterday, to find out the next appointment isn't till September .

Fortunately Dr N's secretary has sorted out a repeat prescription which is waiting for me at the hospital pharmacy, which I can't currently go and get because I have DD at home in bed as she's not sleeping, and has fainted several times so far today . Plus it's going to cost me £20 to go up to London to get the damn tablets .

In order to stop this happening again, Dr N wants the name of DDs local paed, to get them to do the repeat prescriptions. Except we don't have one cos we dumped Rubbish Paed for being, well, rubbish, so now I need to go to the GP (who is a new one cos the old one we'd trained up has now left), get a paed referral for someone who is going to 1. believe in DDs condition (Rubbish Paed if ayoe remembers reckoned her fainting was due to "deep rooted childhood trauma i.e. conversion disorder), 2. be prepared to be told what to do by Dr N, and 3. be able to see us regularly enough to give us enough meds.

And I haven't got very far with the DLA form which needs to be in by 3rd July.

On the positive side, DDs hip is much better and she's recovered from the tooth surgery, just need to find out why the hospital orthodontists don't know that she's had the surgery (in the same hospital), and where on the braces waiting list she is. I might have to go down there and sort it out face to face (which means I can go to Aldi for a treat - don't get there very often as it's 30 minutes drive in a town I very rarely go to).

And breathe... .

How is everyone else doing?

Not much news from me ...still going around in circles getting ICT for ds even though 3 professionals have said he needs it ....

Tempted to buy one my self ...(if I could) ...at least I could prove school are not supplying what my son needs if I was going to go for statementing....or does it not work like that ??

(Midnight. How is the form going !!! )

form finished, going in the post later on!

Oh no midnight

And yup I just sent ds3 DLA renewal back of waiting to hear back if get same

Can I ask how long take for letters after seen Dr N

She is lovely and very thorough she thinks ds3 collapses not pots related but after reviewing video convinced ate cardiac or neuro related . So needs referring and needs a recorder for a month try catch one

She also mentioned his low tone which beyond what expects and was very interested in his Physio report that said trouble muscles contracting . Said needs see neuro muscular as sure way more than eds also seems his low tone is causing the heavy breathing /snoring as his airway collapsing so needs sleep study and maybe Cpap depending results

We left with more questions than answers but relief someone to listen she contacting local paed

We're booked in for growth hormone testing in September as soo tiny and Aldo referal dr rawat to discuss options as he struggles breath /eating and has suspected delayed emptying

Bizzey go for statement only way force hand

Oh we have AAC appointment coming up to for speech device assessment all go

thc - at least you're getting somewhere, even if it's just ruling things out . Takes a while to get Dr N letters as her secretary seems to be on holiday a lot . Probably a month or so (if NHS, private is within a week apparently).

Was private but been nearly a month will wait couple more weeks in case it's because trying talk to paed etc then chase up

Can I just come in and do a happy little dance? (hope nobody minds if they're having a rough time)

Dd (16) has spent many years in pain, used a wheelchair for much of junior school and first years in secondary, often in too much pain to get out of bed, naturally became seriously unfit= more pain, developed extreme pain anxiety=tensing up=more pain, school refusal, suicidal tendencies. You get the picture.

Over the last couple of years, her joints have stabilised naturally (=end of growth spurt), when she turned 15 the doctors agreed to put her on permanent painkillers (tramadol) to enable her to use her joints and build up their strength. We are now using the wheelchair as a clothes hanger.

She is planning to go to fulltime college in the autumn, is able to get around town with her friends, and has secured a place in a summer youth theatre production where she will probably be dancing on stage. For the first time in my life I know the luxury of saying "dd, can you just run down to the shops for me" and knowing that it will do her good rather than wreck her health for weeks.

It's amazing, it's like a whole new life opening up! The anxiety is still a big problem and we don't feel very safe on that score yet, but she is working to overcome it.

Ds is also a completely different person: he had a lot of pain in junior school and sometimes had to have time off; now he walks over a mile to school every day and often spends the afternoon roaming with his friends.

Of course we know it may not be a permanent reprieve, but every minute is good.

cory that's brilliant news.

midnight I feel your pain. It would be so much easier if proffessionals would communicate properly and agree with each other. Good luck with the DLA form, I've got DS2's blue badge form to do this week.

THC I hope your DS gets the same rate of DLA as before.

DS4 is finally home from hospital. He's been on demand feeding for a couple of weeks now, since he pulled out his NG tube so his weight gain isn't very good. So he's on twice weekly weigh ins and I'm getting the sense of deja vu from when ds2 and ds3 were babies.

On a positive note DS1 and DS2 had their sports day last week. I was dreading it as DS2 said he was going to be in a running race and with DS4 in hospital I'd only managed a very brief chat with the senco about it. But the school handled everything really well. All the children with mobility problems got a head start and DS2 started half way down the track. He really enjoyed himself and even got a bronze medal for coming joint third out of 4 in his race. DS1, who has mild hypermobility and although he doesn't have mobility problems as such, he is not remotely sporty although he tries hard, did the relay race and as his team came 3rd out of 4 he got a bronze medal too.

midnight Well Done !! I will finish mine..I will finish mine...I will finish mine ....Clicks heels 3 times

cory What wonderful news !!!!

ellie as an aside ...though it might be different for children.....our council does not send them out in the post now ...you have to go and get them.....this was for my dad. They could book me a place in the car park ...but they do not have disabled bays to get him in his wheelchair

Anyhow ...after a bit of huffing and puffing on my behalf...I phoned them in the car park and they came down to me ...so did not have to get dad out of the car ...but had to have him with me .

Thought it might make it easier to collect if you knew.

THC....ds wants to be statemented ! . He wants extra help and knows he is not getting it ! He is struggling ...but clever enough to know he is ?

well the DLA have started looking at the form as they texted me to say they were going to contact the physio - hopefully she won't be too positive about things (although I didn't say there was stuff she physically couldn't do because of the EDS, everything was focused on the issues around her fainting) as her whole philosophy was focussing on what you could do, rather than "not being able to do stuff".

What percentage of people get turned down first time, when it's not an obviously straightforward case? Do we know?

get on with it bizzey [stern look].

Interesting your all saying been text I has nothing other than a letter say looking at it ?

Hoping this means they going award the form

Ellie that's good on the school least trying . Ds3 school refused so he had a sick day

Cory
Glad DD doing well and that she getting a break from it

Dizzy do the form < frowns>

Midnight fingers crossed I think lot depends on who looks at said form . Hopefully the care at least be a given

Just read Dr Ninis report seems they do not think it is pots but feels more cardiac or seizure related . Silly really I was hoping my gut feeling that seizure related was wrong but kinda knew it was more likely be that

She also come up with couple things and recommending sleep study as looks like sleep apnoea on top of caused maybe by low tone and recommending a neuromuscular seeing him to

OMG OMG OMG text from DLA people - she's been awarded something Won't know what till paperwork arrives, or money hits the bank account and I manage to do the calculations. Am and and relieved that I didn't muck up the form.

Yay interesting your all getting texts not from here I'm waiting will call next week see what happens

Thc - in some ways it's maybe easier to treat if its not pots? Some of the stuff they can do for heart issues is really effective (albeit invasive) whereas pots is "try this, it might help".
But finding out what it's not is also making progress, depressing though that is.