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.

[TheHumancatapult]

oh and funny enough ds3 is very tint weight and height so failure to thrive but none seems to care but was picked up on today and he wants tests done

and he wasintrested in ds2 reckon he sounds like Marfans but with gut issues to .so has given me some helpful info

[auntevil]

THC - it took me forever to get anyone to be serious about DS3's failure to thrive. It makes me mad when I see news reports on parents 'not in control' of their child's weight, and that they should just go and see a DR. Do they not think that most of us have tried? they're just not interested. Then , when they do take some notice, they almost suggest that you've been doing nothing all the time.
Sparkle - I love your positive attitude about the NHS. I would love that it should work as it should, rather than work occasionally if you find a service that gives a damn. Written by someone who is way past the positive side and is hovering between pragmatic/realistic and resigned
Well DS1 did sports day this morning. He had ankle support, and it seemed to work. Its a little swollen, and he has come in and sat down and not moved since, but he is happy as he did OK. TBH, sometimes, when things work out, he does get a boost to his self-esteem when he does better through effort than some lads that do not have his difficulties. No medals, but no shame - so overall I'm pleased he went

[IShallWearMidnight]

THC - I'm so pleased you got what you wanted from Prof Graeme - even though it does't change anything, having someone "official" confirm that GOSH haven't been dealing with your properly, must make you feel a bit better .

If it's Dr Ninis you're being referred to, her next clinic with appointments is likely to be in September, as we've been bumped back to the end of August clinic.

[TheHumancatapult]

Yup that's who he wants Rio under . So the letter to GP will ask them to refer him ASAP .

Just hope GP listens to him .but yeah I figured be after the summer due to frigging Olympics . Just hope not the standard 18 week wait but if we get it I'll even settle for the wait

Yup he can't believe that letters from HOSh etc just say he he hypermobile ignoring the dx that was given by Oroffedor Pope

Course others see Gosh and then ignore anything else . But Wien someone with his experience says well that your dc in top 30 of kids he seen in all his years for being hypermobile you hope someone listens

Aunt yup I'm expecting someone to point finger out and say I'm not feeling him properly or enough etc etc . Forgetting that eldest is gone my daughter is find but ds2 has problems putting on wright but least is growing intact rather to much

[TheHumancatapult]

Any of you ladies going or considering to the national EDS conferance in September .?

[SparkleRainbow]

THC - I wasn't aware of the EDS conference....I would be interested in going, where are the details?

I am thrilled that Prof Grahame was so positive, I have always liked him, but after your previous experiences I was unsure. So dx of type 6 from him...not unexpected, but still and POTs too. The marfans for ds2 also sounds feasible doesn't it.

Heard from clinical psyc yesterday, she is coming into school on Monday 9th to feedback to school what was obs by her colleague and how best to support ds's psyc needs. Sounds positive, I am going too.

[SparkleRainbow]

Found it www.eventelephant.com/edsukconference2012

[TheHumancatapult]

yep thats the one Im going for weekend package luckily can split the payments .But the Dr , proff Grahame is sending to people is infact one of the speakers at the confernece and figur eif he has faith in her then im game and be intresting talks to

OO that sounds promiing hope that can help ds with his self confdence

[TheHumancatapult]

no definte on the pots but he feels it is strong chance and wants more done .

let us now how ds gets on ? .We have the PD team going in next week to on the 4th July

[SparkleRainbow]

I would look at picking one of the weekend days, the programme will be issued on 2nd July it says, and so could try to pick "best"day. Will talk to dh about it tonight, and see if he is available for child care.

Good luck with the pd team, I hope your is as good as ours is.

[TheHumancatapult]

yeah though you can take aif you can be good to meet you .I know one of the peakers is Dr nelli ninis who is who proffesor G is sending people to see now

[IShallWearMidnight]

the STARS conference is having several sessions on PoTS at a much cheaper price, if you're like me and went [gulp]. I think that may be of more use to us actually, but I'm going to wait and see what the different sessions are for this one before making up my mind.

[TheHumancatapult]

dam it midnight that look good to but with that im not sure if ds has pots for definte yet .

its chance to discuss his type im wanting

[SparkleRainbow]

THC - It would be great to meet you! I would be interested in hearing her speak too!

[SparkleRainbow]

Midnight - although ds and I are both affected by either pots or neurally mediated hypotension, it is the more general eds that affects us, ds in particular and where I think I have the most to learn.

[TheHumancatapult]

Yeah there's no program of who and what times till early Julybut I do know she is attending as was confirmed today

I'm doing weekend £300 but that does include dinner Friday night breakfast and lunch on sat and Sunday and banquet dinner on Sunday . At the moment there is payment scheme over 3 months

[TheHumancatapult]

1st payment in June then July and August

[bizzey]

HI all hope everyone is well

THC I looked up that conference....sounds good and well worth your money if you are going to get some answers that you are looking for ...

I had my copy back today of what pead wrote to my GP .....Pead is going to do referal to genetics but no mention of rhummie ??? Does that maybe happen after we have seen genetics...not 100% if they are connected or separate ?

But had my little shock of the day when i turned over to read that he has asked GP to do the referal to community pead in our area for assesment of NEURODISABILITY

OK i have googeled and am not that shocked that they might be looking for other things as well as i have had my little niggles as well about things but.....

i am feeling a little that my niggles may be right !

[auntevil]

How are you feeling bizzey ? Being proven (possibly) right is a 2 edged sword. You feel pleased that you're not imagining things, but sad that they might be right. No winners with this
On the plus side, at least things are moving, and you might find some answers and support.
Have a - its a little early for - and think positively about new input.

[elliejjtiny]

That conference looks really good. Is it something they do every year or is it a one off thing? We wouldn't be able to go this year as it's the w/e after ds2's first week at school and he will either be lying on the floor or having a massive tantrum by then. Quite fancy downloading the info and leaving it on the teachers desk though .

[bizzey]

Thanks auntvil....I am fine having a lovel coffee and now more worked up about the fact that Andy Murray is going to be playing while I do the school run ...he has just started now

Well if anything comes from it, it can only be positive and will make sure everthing is in place at school to get any other help he needs.

Off now to re- tune my car radio to the channel that does alot of GRUNTS !!!

[TheHumancatapult]

Ellie it's I think yearly or two yearly from what i understand but you kight want to call the helpline and check I admit I'm going minus the kids

Bizzy it is s shock ANC mind goes into overdrive when they start looking for new things . Enjoy your tennis

Sparkle how are you and how's Ds

Waves to everyone


Anyone had their dreaded sports day yet . First attempt it was rained of today was 2nd attempt fortunately we was nit in but Ds was not taking part as he tried fell over cried and got scared of to many kids>

On upside saw paed today she is jot going desk with Eds said not enough known by her and agrees referal to Dr ninis be good

But she wants me to check that short is not related to Eds as She is worried about Ds size at last and I did not even need to ask at age of 7 he is 111cm and just under 18 kg sitting him right at bottom of the charts
But she has started carrying out done base line tests . For growth hormone and a bone age check also a test for short stature coeliac

[mycarscallednev]

Hi everyone, THC - glad you seem to be getting somewhere at long last, its battle though isn't it?
Still waiting for GOSH to call us back...........since March, have chased this week as ds is getting worse and need some idea of where to go. Northwick Park [genetics] have found 'irregualar abnormalities' in the skin sample and so we wait for the next biopsy result but they say its 'eds with crossovers' - hedging their bets I think.
Ds had a massive sublux which resulted in projectile vomiting with the shock and pain - anyone else had this before? I think its just a pain reaction like some people get with a migraine? He's struggling at the moment and its hard to keep motivating him to push on each day.
Bizzey - we saw Neurodisabilities - at GOSH because our local team here are rubbish [what a surprise], here they are only interested if you are ASD, and dx you with this as you cross the threshold as it fits better with the education system rather than anything as yet unknown to them!! Its from this assessment that we had the additional dx of Dyspraxia and Dyslexia though, and it meant that our local team concentrate on the issues he has rather than ones he doesn't.
Hugs to everyone xx

[TheHumancatapult]

Cars good luck chasing GoSh but I do have a number thatight get you through direct yo Dr Pilkington bit other tip is ask for the sectarys or do in writing

[TheHumancatapult]

Ok confirmed people St Eds conference

Professor Mathias{ pots}
Dr Adam Farmer [gastro{

Dr William wallis ] cardiac problems in EDS }
Dr Alan Hankim ( chromic fatigue and fibromyalagia

Dr Nellie ninis ( she is the one p G is sending people to