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EDS Hypermobility 3

825 replies

elliejjtiny · 11/06/2012 23:12

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 Grin.

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.

OP posts:
auntevil · 22/08/2012 17:22

That is really interesting Midnight.
DS1 fell in the bathroom last week and says that he didn't knock it on anything, but his ankle gave way and he skidded. He got a cut to his knee, and I ended up at the walk in clinic as it just didn't seem to want to close together - but also wasn't really bleeding either Confused
Anyway, Dr put those strips on, but didn't seem convinced and told me to go to A&E if it didn't heal properly in a day or so.
All very weird - added to the fact that it was his ankle that hurt and he wasn't bothered by this gaping hole in his knee at all!

TheHumancatapult · 23/08/2012 14:42

I give up can't fight any more

Trust had tightened up on her and all Dr ninis can offer at the moment is to advise local paed on support and what to do re physik etc

Which we already have that OT /Physio /Gentics on board

Local team sent us to Gosh as he was to complicated , Gosh discharged because of him collapsing si he just carry on collapsing and were have to live with it

IShallWearMidnight · 23/08/2012 14:43

an A and a B for DD, which she's delighted with (the B was 4 marks off an A which is a bit [grrr], but anyway). So that's one thing out of the way, now the hospital appointment (and struggle to get school trouser which a. fit and b. she will wear Wink)

TheHumancatapult · 23/08/2012 14:44

So yet again we fall through the gaps , because he is complicated unless I can find money to go private

IShallWearMidnight · 23/08/2012 14:46

thc - can she not help re medication (I know he's only a bit PoTS-ey, and there's other stuff going on as well) but surely there's something you could at least try? So Dr N is now a "diagnose and advise, then pass back to local hospital" person? That's immensely annoying to say the least.

TheHumancatapult · 23/08/2012 14:55

Seems she can't even diagnosis now as the trust not happy all she can do is advise locally how best to support him

Locally gave up ages ago as to complicated so I just mange it and guess will just have yo carry on

Where do you go though even the national EDS charity can't really help as type is rare so little info and because he has the extra complications of other stuff . It makes him complicated

Midnight that's the trouble no one knows it is POTs or something else that makes him collapse were averaging minmum of once a week and bounced around hospitals . Nothing more now till December when we go back to local paed

Guess now just wait on the DDD study see if anything comes back

elliejjtiny · 23/08/2012 15:27

(((hugs))) THC I feel your pain. Fingers crossed for the DDD study. Does your DS3's dad have EDS as well? Just wondering as I'm trying to work out why DS2's EDS seems to be so different from everyone elses. DH and I both have EDS so wondering if this is the case for your DS as well as he is one of very few that I know of who are similar to DS2.

OP posts:
moosemama · 23/08/2012 15:31

THC I am so sorry to hear you have been let down again. It feels a bit like an NHS conspiracy is going on to prevent proper dx of EDS and related conditions so they then only have to provide barest minimum (for that read no) care at local levels rather than funding a suitable specialist service. Angry

Just a thought, but have you tried googling some American sites re your ds's collapses and their relation to EDS. Would it be worth contacting Diana Driscoll at all, she has so many connections, she may just know something or at least be able to point you in the right direction. I know private treatment isn't an option, but it might at least arm you with some research/info the NHS would find hard to ignore. It's a long-shot, but may still be worth a try.

moosemama · 23/08/2012 15:31

We are just back off our hols, where two days in I stumbled into a hole on the beach and ended up with an ankle inversion, sprain and I now think possible avulsion fracture of the 5th metatarsal. I had exactly the same injury two years ago, but on the other ankle. Hmm Dh said he was sure I'd broken my ankle because he saw it bend completely round so the end of my shin bone was touching the ground. He couldn't believe it when I just swore and limped back to the camper! Annoyingly, just like last time, there's not much to see. It's pretty swollen, but none of the dark bruising other people seem to get. Nothing to look at, but hurts like hell - not a good combination for getting sympathy and help around the house. Hmm

Ds2 has tried to be more active, but we have monumentally failed with his physio circuit, as I need to do them with him - or at the very least follow him around as he goes. He has done lots of running around on the beach, climbing sand dunes, water wading, playing beach tennis, riding his scooter and walking the dogs though, so much more active than usual. He coped pretty well, but his ankles in particular were very painful at the end of each day. He also had a session on a pilates reformer before we went away and that went really well, so he is going to have a few more sessions on that soon.

We have a physio appointment next week and I think despite him being generally more active, I am probably going to get a lecture for not keeping up with the circuit training. I am ready for an argument though, because the exercises she wanted him to do were downright dangerous at this point. He needs to build up his core and general fitness before she has him trying to squat and lift dumbells simultaneously. He isn't strong enough to hold the correct position long enough to carry out the exercises yet and needs to build his core and basic strength before getting into dumbells etc. Pilates instructor (who is qualified in sports medicine and anatomy) agreed with me after her assessment and first reformer session with him. She said he needs to stabilise his core before he starts trying anything more complicated. Feel like cancelling the physio for all the good it's been so far, I know more about fitness and circuit training than she does and what I know isn't all that much, just based on my own workouts. Sad Angry

Oddly, ds1 has received an appointment for another OT assessment. Confused When we saw his paed a couple of weeks ago I mentioned that he'd never had a SALT assessment and he was shocked, as it should have been done as part of his multi-disciplinary ASD assessment. He said he'd look into it for me, as he was going to the assessment unit in a few days anyway. Then while we were away we received a letter from the unit saying ds1 has an appointment for both a SALT and OT assessment in a couple of weeks. All very odd, considering the lenght of their usual waiting lists. He had a basic OT assessment done last year (referred by HV) at around the time of his ASD assessment (he scored bang on the cut off point, so wasn't entitled to any therapy) and I hadn't realised they weren't joined up enough to have incorporated it into the process. It now seems they completely missed SALT and OT from his ASD assessment (he was a pretty clear cut case, but still Angry) and are now panicking and trying to rectify it retrospectively. The good thing is that I have met their OT and she is very good, so I fully intend to grill her about hypermobility while we're there!

TheHumancatapult · 23/08/2012 15:38

Thing is they all suspect something Cardio /pots related but because he also has suspected chromosome issues dd and verbal oral dyspraxia waters all muddy

Have decided that Not going to chase anything more this side of Xmas am sick of it will see what happens after repeat cardio tests and paed in Dec

Not sure but it looks like I carry recessive gene for type 6 also dominant gene for type 3 also his dad may Carry recessive gene

auntevil · 23/08/2012 17:11

THC - do you think that maybe a quick (as it probably will only be quick Sad ) break from chasing might give you a breather and then you might feel ready for another fight? I know how it feels to fight and feel you're getting nowhere and not know what avenue to go down next to get what you need. Sometimes a break, then sit and review it yourself, decide what you want and go hell for leather can get results.
Don't know what else to say really other than if it were me, and everyone was buck passing, I would head for the top paper shuffler, find some NHS guidelines that have been breached/mis-interpreted, and ask for a meeting to see how they are going to offer the joined up service that is required.
Well done to your DD Midnight - bet you're all chuffed. Are you going to celebrate tonight?
Moose - why can accidents never happen at the end of a holiday - is there some kind of unwritten rule that says it has to happen at the beginning? Sounds painful - but I'm not surprised it has gone largely unnoticed at home - we are, after all, the unnoticed!

moosemama · 23/08/2012 17:25

I know auntevil, I spent the best part of two weeks trying not to complain and either being left in the camper while everyone else went off and had fun or hobbling around trying to pretend it didn't hurt. Hmm Poor dogs only got two proper walks as well (one of which was when I fell down the blooming hole).

I have a thread in General Health now asking for advice about where to go to get it checked out - it's not an emergency, so a&e not really appropriate and we don't have an MIU. It would be a bank holiday weekend as well wouldn't it and I am on a BIBIC course tomorrow, so can't get it seen then anyway.

Apologies for grumpy posting. Blush

TheHumancatapult · 23/08/2012 18:57

I am going be taking a break am concentrating on paying for Next yeArs holiday then once that is paid will review what next

Going to fire fight the other stuff , luckily his new statement is pretty good so just need slight adjustments , meh Physio /ot be sporadic and see what paed says in December

Though I shall be asking some tough questions at conference on few weeks Grin so ladies of you can think of any let me know

SparkleRainbow · 24/08/2012 09:57

I am not at all caught up with anyone's news sorry except I read about THC.

THC I so understand how frustrated you are with drs consultants and pct trusts. My gut feeling is before you have a well deserved break you should write to Prof Grahame...tell him what has happened, remind him about the locals referring to GOSH because they couldn't cope, GOSH discharging because of complications, seeing him privately and him referring to Dr Ninis. Tell him as a single mum you can not afford to go privately, that ds continues to collapse regularly... and ask him where you go from here and if he can help. It is only one letter and I think it might make all the difference.....worth a shot.

I am excited at seeing you at the conference in a couple of weeks.....we could try and tackle some drs with questions together!!!!!

Will try and skim back to catch up now.

SparkleRainbow · 24/08/2012 10:04

Midnight - congratulations to your dd for her results. I am glad she got what she wanted. She has done really well considering the time she has been having!

TheHumancatapult · 24/08/2012 10:55

Well done midnight dd

Yup sparkle I shall do that and when the official letter comes out from Dr ninis re the trusts descion I am going to write back sending all the information I have and try and reverse their desvion

I was upset yesterday but better today

ANC yup can't wait to meet you am looking forward to it Grin

auntevil · 24/08/2012 11:05

What a formidable team - THC and Sparkle - it should have the Drs quaking in their boots! Well, not exactly quaking, but alert!

IShallWearMidnight · 24/08/2012 12:12

thc - can Dr N prescribe still? (for out of area people I mean). Only what we want is a review of medication, and something in writing for GP to carry on with, but I'm guessing that would need regular follow-ups which presumably would now be a issue.

My plan (if we have the same problems) is to go back to Prof G and try again.

I'd think you might be best letting him know what's happening, as he needs to know if he can't refer people on to Dr N any more. He ought to be able to come up with an alternative for you without the expense of another appointment.

Will have a think of some pointed questions for you and sparkle to ask.

DD says thanks for all the congratualtions (even though you're all imaginary in my computer Wink).

auntevil · 24/08/2012 13:56

Sitting here suffering from paranoia (doesn't help we all have the dentist in an hour and a half Grin ). Does anyone here suffer from burst blood vessels a lot. I keep getting them in my hands. I have a very purple finger at the moment. They just appear, no event seems to proceed them.
The paranoia is that everything keeps coming back to hypermobility, reality is probably more like the fact that I'm getting older and these things are just likely to happen more often.

SparkleRainbow · 24/08/2012 14:33

aunt - my ds regularly gets burst blood vessels in his feet, particularly in his smaller toes, usually following having walked for a bit (like going shopping in town) The rheumie, physio, ortho surgeon, paed and poditrist say they don't know what it caused by, they just say it is vascular. Our gp says it is caused by the bones in his feet moving cos of eds, stretching and collapsing the joints and then catching the blood vessels and putting pressure on them causing them to bulge and bleed. Makes sense to me.....but not a "proper" dx.

SparkleRainbow · 24/08/2012 14:34

It is one of the things I would like to try and ask about at the conference....ask other parents and sufferers if they have this too.

SparkleRainbow · 24/08/2012 14:34

THC on the subject of the conference, I have had a letter confirming, and asking me to fill in and return a questionnaire but nothing else, no further details yet.....have you got anything else?

auntevil · 24/08/2012 16:48

Must be paranoia afternoon in the evil house.
Just come back from the dentist (told off again for the amount of diet coke I drink Blush
Then the dentist asks me how long I've had problems with my jaw - clicking and moving. Well this is the first I've heard about it. He made me open and close my mouth a lot - and I still couldn't hear it Blush
Then, tells me DS1 is likely to need a brace. I said - he's still young(9), I thought he'd grow to fit his teeth. He said unlikely as he has a small jaw and lots of teeth (this is making our whole family sound weird - we're not, honest!).
What it did do was make me think - I've seen that and hypermobility linked before.
I thought he would be like me and grow into my teeth, but apparently it doesn't look likely Sad
Anyone else feeling 'weird' today - clicky jaws, purple fingers and too many teeth Grin

IShallWearMidnight · 24/08/2012 16:53

I have a clicky jaw, and had too many teeth (flashbacks to being 10 and having horrendous reactions to the general anaesthetics, and the smell of dentists surgeries). I also used to have poor circulation, ad it was a running joke how cold my feet always were.

So you're not the only weird one Wink. Only DD3 has inherited my teeth, DD2 has her dad's small neat ones, DD1 grew into hers without needing any treatment.

moosemama · 24/08/2012 20:17

auntevil, I get small blood vessel bursts on my palms of all places. Have also had larger bursts on my eyeball, forearm and shin - none of which were caused by any particular incident or accident.

I also have a clicky jaw. First thing I do every morning is click it back into place, as lying with my head on it's side on a pillow pushes it out of joint.

and

I had to have four upper and two lower teeth removed as a child due to overcrowding (read too many teeth for the size of my jaw).

Fortunately the dcs seem to have inherited dh's teeth (and his toes, which is also good as I have really bizarre extra long second toes, which aren't exactly hammer toes by still bend really oddly Blush).

Still haven't been to A&E, but finally got through to my GP who told me to straight to A&E rather than seeing them first. Couldn't get there today, so am going first thing tomorrow morning, hopefully when it's quiet.