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 have been AWOL with school holidays and trying to survive the wet weather .

See I tend to Drs I've ds3 as disabled because it's easier than trying to explain amd truth anyone who sees him and realises his actual age can soon spot it and prefer that than anything else

As for the scooter /chair sort of thing I often get people looking at mine and little kids asking why car in the shop ( has headlights indicators and does not look like a traditional powerchair )

Arisne hope your enjoying that little one . Sparkle you ok

Hmm never thought about clotting levels

Ds3 enjoying no Physio and lazy days but looking forward to see if get help /advice of Proffesor G

Am hoping that weather improves for the summer

THC me too, although the really hot weather we had upset DS3's reflux because he was wanting to drink more than eating which upset the delicate balance of food and drink. All that extra water was too much for his floppy stomach muscle to cope with. I had spare changes of clothes for him but I lost count of the amount of times I turned up at an appointment with puke on my sleeve.

DS2 would love your power chair. He keeps saying he wants one like that with a basket in front for his toy sheep to sit in. I have been saying positive things to him about the blade wheelchair but he's not convinced.

No basket in front sorry your Ds what about a side pannier like on bikes for his sheep

Hi everyone I am back, sorry to have been awol. We went to london for a few days and stayed with a good friend. Took the dc to the Natural History Museum...borrowed a wheelchair for ds and it was fantastic for him....will come back to this. Half term has kept me busy with the dc, dh has been off too. Unfortunatelt dh's depression is back with avengence, so am struggling with that abit. Ds has started to really notice dh's bad moods now too, which is tricky.

Anyway Bizzey - sorry I wasn't here to celebrate with you, and drink with you, and provide many tissues needed. All completely normal reactions....well normal for me anyway
Ha that blus hand thing is eds too.....should have known.

Auntevil _ I am glad your friend gave you some reassurance about where to go from here. hen are you going to see the gp?

Ellie - hope today's wheelchair appt goes ok.

Speaking of which, the wheel chair was amazing for ds, he could join in properly, he was happy all day and not too tired. Now we would never get a wheelchair on the nhs...and we don't need one day to day anyway, as I am lucky enough to have a car and be able to drive him where he needs to go, and have a disabled parking badge for him too. However any trips out, shopping, visiting places, travelling by public transport are too much for him, and his pain levels shoot through the roof. So I have been thinking, my mum is planning to give me some money from the sale of her house soon, so I could afford to buy a chair myself for him. It would need it to be lightweight, as I have to lift it, and it could be an adult on as he is not small for his age.....any recommendations, or makes to avoid?

friend of my mums is in a wheelchair permanently, and he advises going for a sporty model, as the whole wheelchair thing is so depressing you may as well have a cool one. Self propelled gives more independence, but is bulkier and heavier (and you'll be the one hefting it in and out of car boots etc.). Funky colours and wheel trims are a must as well he says. There are wheelchair shops around where you can look at them and try them out, and short term you can hire them from the Red Cross, well it's a "suggested donation", but basic models only, and it depends what your local branch has.

Hi again everyone - our wheelchair is a Blade, but we were lucky enough to get it from wheelchair services - it's made to fit, which is great, but makes pushing it tricky as it has a narrow wheelbase. We have had spoke guards fitted as he kept dangling his arms by the wheels and fingers were wandering near the spokes - not great neuroreceptors on fingers so likely to get pinged!
It is heavy though and probably others out there which are lighter. We also have rear anti-topple things [sorry can't think of a name for them!] which mean that it is easier to get over bumpy ground or up kerbs - also stops the chair from tipping backwards.

On the nose-bleeds - my son gets dreadful, heavy and prolonged bleeds of up to and a couple of times, over an hour.
We were referred to ENT who were reluctant to cauterise as the EDS scaring isn't great and could make it worse rather than better. We have cream to put up his nose for when they just don't stop - once started they can carry on for a good week, several times a day.
Prof P said to wait out on the genetics before cauterisation.

Thanks midnight and nev for the wheel chair tips.

Wow nev those are nosebleeds!!!!!!!!!

Thanks everyone for putting up with my moaning and flapping . DS2 will shortly be the proud owner of an action 3 wheelchair (I think it's similar to the blade) with self propel wheels, red frame and spoke guards with spiders on. DS2 is very excited and it's so much cooler than the buggy. We now have a 3 month wait for it to come. Meanwhile I need to choose a carrier/backpack for DS3. I'm really pleased it has worked out but also sad in a way because it will be more obvious that DS2 is disabled. In the buggy he just looks younger than he is. Mind you, if he'd stayed in the buggy, the school uniform would have given away his real age in september. I wish he didn't need one and I sometimes look at other mums and think you don't know how lucky you are. I don't say that to them though, that would make me weird .

sparkle I don't know about brands of wheelchairs but I think a cool one is a must. The spider wheel spoke guards look really cool. I was quite impressed.

THC side pannier sounds good, will definately look into that as well as somewhere to put all the stuff that normally goes in the buggy basket.

I hadn't even considered that fact I would need to get a cool one Ds was just so chuffed to be able to get around without pain.

It is a good thing to get the help the dc need, but it is still a very gitting experience.

Every school day I get filthy looks from one partcular mum who obviously resents the fact that school have a disabled parking space for ds. She always parks in the staff car park anyway, as she can't be bothered to walk the ten extra yards from the street. (that is my one bitchy moment), every time though I just want to stop her and say, "I realise you have a problem with me being allowed to park here, would you like to swap positions and for your dc to be in pain instead of mine" ....think that would make me slightly weird if I were to say that too....would feel better though

Sparkle - don't waste your breath - she just needs a slap!
Its so sad what some people are so 'envious' of. The same mum probably thinks that you're living the high life on DLA and the tax payer bought your car (top of the range i'm assuming )
DS doesn't have, or need a wheelchair, but there are quite a few at his school. The trendy ones are best. Might be worth visiting a good bike shop to see how you can pimp it
Sparkle - I need to go online and book a GP appointment. My boys don't do waiting and I usually have to take all 3. Dr surgery for appointments that day phone line opens as we are en route to school and by the time we get to school, all the appointments have gone. So I save up a decent trip, where everyone has something they need to go for and book several sessions back to back - one for each!

When we were at school we used to ask his best friend to push him - they both thought this great, zooming about!
We do get 'looks' especially when he gets out and starts walking - but I just stare back now. It means that he can get from A - B and enjoy B, otherwise he's just too exhausted or in pain to do anything, or go anywhere.
It's his older sister who is the most protective, the other day she was pushing him and some 'mature' ladies were looking at them like they were freaks. She turned to one of them and said 'It's Ok, he's disabled, but you can't catch it - or would you rather the chair was for you?' That's my girl!!!

Sparkle downside to the lightweight sport models they often dont fold as are rigid frame . It is what I have so us fab for self propelling but yo get into standard boot I have to pop both wheels if remove my cushion and then back rests folds down but that it is it you won't get much more in your boot

I have a solid foot plate downside it is nor adjustable upside it makes my chair small and neat

Also question to ask is will Ds be self propelling or when he us tired will someone be pushing him also how much support will he need

Ellie

Yes it is heartbreaking one way but in another it is easier that it's more obvious than a buggy people make more allwances

Peppa pig world last year we must looked a sight . I was pushing Rio in his chair and Ds 2 was pushing me in mine so train line look and he was running lots if laughter emerging from us

Anti tip bars are handy especially for kids , but ones that can flick away are better as they can be a right pita for going up kerbs as it can stop the tip you need also pushing them especially on kids small ones you can kick them

If you have small Nhs chair ask about having push bar fitted as means no narrow handle gap and you can do one handed

Ellie I'd putting anything more than teddy Ib dint fill side panniers as make unstable either Light bag on handle or bag that sits underseat

Hello have been hovering here & alot of what you say rings bells for me as an eds parent (who's desperating hoping her son hasnt got it)... Argh tied myself up in tenses!

Just wondered whether anyone knew of an eds friendly pain clinic in London (for adults), I am under hana kaz kaz (prof grahames clinic), but they referred me to my local pain clinic (charing cross) & they ve been awful!

Double will ask around

Thank you catapult

also have a look on the hypermobility.org forum (if you're not on there already), as someone may know of others (although they seem a bit funny about not mentioning specifics of anything). Can your GP surgery help with anywhere else?

Could you go back ask for new referal ? I don't go after getting told tat need fOcus On my happy place when pain gets bad . I said well sorry my fecking happy place is not wheelchair accessible and focussing in that does nit get the 1001 jobs that need doing done

My new Gp is fab he prescribes wide range if different strength meds and tells me the maxoum dose of each and any contra indications and then said I'll leave it up to you to decide what you need and when since I dOnt have a clue what hurts or when

Oh lord - your happy place !!!

Not only BAD advice, but lends itself to many jokes along the lines of 'I'll show you my happy place'... Grrrrr

Mine took me through a 2 yr old MRI to show me how my back is not bad enough for me to have so much pain. I was there as something had happened to my back & for weeks I couldn't walk as legs wouldn't respond to instructions from brain. Idiot.

He then prescribed me drugs that A. Shouldn't be taken with existing medication as can kill and B. cause dangerous interactions with each other if not monitored v carefully. Idiot.

Will try kaz kaz if I can't find one myself, it tends to be a v long wait to get an appointment with her.

Sadly they also tend to suggest that kids go to their happy place to

That's awful, sometimes wonder if some of these people have any humanity left in them