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.

[can't quite think what emoticon I need] at the long toes! DH has really long toes - and I mean REALLY long. So much so that I have suggested that he learn to write with them - they're more like fingers.
That's what I love about this thread. Clicky jaws, random bruising, too many teeth and extra long digits are all the norm. Home from home

Dd1 saw her paediatric cardiologist yesterday, and is being transferred to a connective tissue specialist clinic. She's doing very well at the moment, and has no problems with her heart apart from mild MVP. Her cardiologist had been concerned about her aorta measurements in relation to her body size. Now, her body has grown but her aorta is stable, so her insides are now in proportion to her height and weight.

I'm glad that I stood my ground and refused for her to be put on a betablocker at age 9. She has such low bp, that she would have felt awful. The consultant was annoyed with me because I had taken her to another doctor last year for a second opinion. She had said that her heart was in proportion to her body, and no medication was needed. I think he decided to discharge her from his clinic for that reason. He's a top cardiologist, and not used to questioning pita parents like me. He said that we were getting mixed messages from seeing too many other doctors before he scanned her. After he scanned her and got exactly the same results as the doctor last year he seemed to forget about the mixed messages .

Sorry, a bit of a rant. I'm very pleased that dd1 is doing so well. However, what wasn't so good was how upset she felt after the appointment. The consultant did address all his questions to her, but she is shy, was stressed and clammed up. She does need to learn how to stand up for herself with HCP's, but she is only just 12 and this takes maturity. I'm only learning how to do this at 39 and three quarters! So I had to answer for her sometimes, and afterwards she said that she felt like a piece of meat .

How do other people's teens and pre-teens cope with hospital appointments and doctors?

Although she is a healthy child, I did feel quite guilty about her feeling like this about a condition that I have given her. Anyway, it looks like she will be put forward for the irbesartan trial. That will mean more checks and yearly blood tests. She won't like that, but does like the idea of the double blind trial and being in an experiment.

How do other people's teens and preteens cope with hospital appointments and doctors?

Oops ignore last post!

DD2 relies on me doing most of the talking (which gets some funny looks as she's 14 and ought to be doing it herself), but after everything she went through last year she has problems with doctors until/unless they prove they listen, understand and believe her. She likes me to have researched what's likely to happen at each appointment, and to be there almost literally holding her hand until she calms down with each new person. Which does have me marked down as Over Protective Mum I'm sure, but general medical people are understanding when I explain about Rubbish Paed, and how we're DIYing it alongside GP and not hospital.

She got very down about the whole thing around 6 months ago, but now knowing that what she has, has a name, and that other people have it, she's a lot happier (although thc's news about Dr N was a bit ). She's actually been able to read up a bit online about PoTS which she refused pointblank to do up till now.

I've found that saying upfront that doctors and appointments make her stressed has helped, as generally the doctor in front of you wants to be the Good Guy and not be yet another useless doctor .

I think was has helped DD come to terms with it is time, a diagnosis, and people not freaking out when she faints (so educating school, friends, family as to what to do). Also having learned the hard way that she has control of her symptoms (if she doesn't drink enough water one day, she'll feel rubbish/faint a lot over the next two days), and having the confidence to stand her ground with a couple of very unsupportive teachers.

Basically her attitude now is "I'm DD2, I have PoTS, it's rubbish, I drink lots of water and go to the loo all the time, if I faint, don't fuss at me, I'll be fine" and then move on the the next thing. Not that she doesn't take advantage ("no I can't unload the dishwasher, I'm iiiiiiiiiiiillllllllllll", also I "let" her not do school swimming - grim outdoor pool - last term). And me having the confidence to let her do stuff and not fuss much means that she has more confidence to do stuff.

I seem to have gone on a bit, sorry . But maybe some of this will be useful for others in the future, as a dealing with a teen with on ongoing condition is different to a younger DC, and I think most currently on this thread have younger DC?

I also refuse to feel guilty about her EDS coming via me - any bad stuff is more than counteracted by the brilliant parenting I do . Honestly, if it wasn't that, it would be something else, and I can look back now and see that all the stressing I did with DD1 actually made no difference to how she is now at nearly 19 (we had a horrible couple of years at the end of primary school which in retrospect were entirely down to unrecognised and unsupported G&Tness). So I'm not feeling guilty, and have tried hard not to stress might not have actually succeeded in that but i've tried as IME it doesn't help. All we can do is make the best of what we have.

I know what you mean about guilt not be a useful emotion. I've always tried to protect her. When the doctor said that her heart was looking good, she asked if that mean't that she no longer had Marfan syndrome. It was tough explaining that this wasn't the case.

Aunt

Ds1and ds3 have it and it's linked to EDS , ds1 has option of surgery but is major and needs stop growing first

Ds3 truth I suspect surgery be on cards but will see

Sparkle I not had much more other than confirmatio. Of having paid I'm hoping it comes soon as it's not long now but know the main lady is away to Thursday ) hehe shame can't hide you on my room for the extra day

Teamgb

Ds2 Even at 15 Wont talk much especially when it's female Drs and Hates when they start asking what je does what does he like to I'd better with male Drs

Midnight you may be ok as your already on the books it is the trust being funny rather than Dr ninis

She is talking to paed and seeing if there is another way to get Ds to her but will wait and see what happens

Bad parent here. I prefer at the moment to do the talking for DS1 - and the younger ones.
Unfortunately/fortunately at the age of 9 (nearly 10 - slightly more than the 3/4 of a year like Teamgb - loved that by the way!) DS1 says it like it is. Now this can be good, but it can also be very very bad. He has been known to ask why if they have spent sooo long studying they have to wait and see, why don't they just know. (to his paediatrician!) She said about confirming suspicions etc, he replied that it was a complete waste of both of their time in coming (can't think where he had heard that expression before ) Thankfully she found it quite funny - as it was clear that I hadn't prompted him.
So in general I tell him to button it unless a direct question is asked. Factual information, how often, when started etc I always try to answer.
I also think he picks up on the vibes I send out. Some professionals he sees I think are great, some I think are a complete waste of time I think he can tell and plays up.
DS2 is 7 - doesn't even answer direct questions - just looks at me.
DS3 is 5 - they hardly ever ask him questions

auntevil, your ds1 sounds brilliant. I think that doctors probably like kids that are spirited. If you don't like children, surely paediatrics is not the right place for you.

I wish that my dd wasn't so painfully shy with doctors. She uses the same method as your ds2 - ignoring the question and looking at me. She's not shy at home, but is in situations which are not comfortable.

Yup ds2 when knows people is sociable and wicked sense of humour

But he has now decided that now he knows what the cause of his problems is which was his biggest thing as it's gastro rather than joints that he rather just leave it other than the cardiac screening

So at 15 have to respect his choice AND tbh dont blame him

Will have to carry on fighting and pushing for ds3 as sure there is su much more behind his issues whether they are linked to EDS or not don't know yet

They given up asking ds3 now az they realise hd younger than his age and does not understand and odd few times he answered something they had to look for me to translate

Be afraid - be very afraid - DS1 wants to be a Dr. Can you imagine a blunt Dr who says it as it comes into his head - isn't that 'House'?
Our friend (aspergers) is a Dr - medical research (thankfully), who says himself that he could never work with people as he would want to say what he thought.
Although, tbh, I think I would prefer to be told the truth in an unadulterated way rather than pussy footing and best case scenario.

Aunt

I much prefer Drs go be like that , fortunate my spinal one Is as was Physio both blunt and saved a lot of heartache

Sparkle

Am going to chase up next week but think The main lady away till Thursday

But think main thing is to bring the payment Thingy proof lol I hope so or be sleeping on park Bench on Fri night
May phone hotel/conference centre to

Checking in again, it takes me so long to follow the thread as I'm still working acronyms and who .is who, that I've forgotten what's what and as I'm.on my phone, its virtually impossible to scroll while posting....but well done on the exam results and did you get any help for your injured ankle ??

We have a physio appt on 6/9 for my DS. Should have been this well but we are away. No news on Consultant appointment, so will see what physio says initially.

Weird coincidences on reading recent posts are DH has VERY long toes, we call him monkey toes, and the curved-when standing-legs, I have a clicky jaw, eased a bit using a mouthguard.

THC - Well if we can't get further than the park bench you are sleeping on I will come and see you there!!!! I will give a ring too after Thursday.

My ds is also 9, he tends to clam up in appts, asks me to answer questions, although he will do it sometimes. He has had a tendency to not tell them the truth in appts to get out faster, so I had to be really hard with him about that. He seems to have given up on climbing on my knee and falling asleep in consultations now....which was the ultimate avoidance technique.........talented my child.

Sparkle hopefully hear tomorrow but have just been brought my train tickets ,and booked assistance , I'm wondering if a small dicatophonr might pick up the talks or if there be transcripts available ( thinking of you other ladies might be handy )

Feeling bit more pistons have decided bugger it at the moment and enjoying the break from it all and not chasing

Though do have a repeat ECG recording to be done as it's shown up few things but am doing the well ball in their court and concerteating on making sure new school get it right

Can't believe we've dropped to page 2!

Anyway, went up to St Marys today to see Dr Ninis. Thankfully she's agreed to see DD on an ongoing basis, so she will write to the Brompton and officially take over from them. She was very impressed with how well we've managed to navigate the system, and get to where we currently are (which I put down to being bolshy, but is also because I am very good at navigating health stuff on the internet). She gave up lots of tips to help the fainting and dizziness (raise the head of the bed, drink a pint of water before getting up, some ankle exercises to do), and explained the whole autonomic dysfunction stuff a bit more (basically DD will always be really sensitive to anything which affects the autonomic system, and generally any symptoms, or worsening of symptoms, will be sign that she's not treating her body properly - so stress probably was behind her vomiting earlier in the year, and while that needed to be treated medically, she also needed to deal with the stress).

She's very impressed with DDs school and GP (they'll do what they're told, but need it in writing), so she's made a list of things we need (boots for school, she suggested a podiatrist to look at her feet and ankles rather than just physio), and is happy that we're not seeing Rubbish Paed .

We were with her for almost an hour (which in the NHS is gobsmacking, and I do apologise to everyone else on todays list as you were all delayed because of us ), receptionists and nurses very pleasant, waiting room was your average hospital paediatric outpatients department, mainly geared up to smaller DC.

Dr N wanted to see us again in 3 months, but the next appointment was January, so just over 4 months. IME that's not bad really. I pointed her to the STARS website to see what they're saying about PoTS, as she hadn't come across them before. She seemed quite nervous about the EDS conference, so be nice to her there folks! Maybe have some nice easy questions for her to answer .

Midnight - so good to hear a positive story. Shows that hard work and persistence (I like the word 'bolshy' as well ) pays off.
THC - I used to use a dictaphone at large important meetings - particularly if I had to write the minutes (don't miss that bit). I found that on the whole, it didn't pick up anyone at a distance, and only well from those closest. So I suppose if you're close to someone good, otherwise it picks up a lot of background. Have you tried it out?

Midnight we still not had our refusal letter yet , know secretary asked for payed details so Dr N can talk to paed

Did say we seen genetics and cardio and Ot and Physio and orthotics and he has statement so it's looking like we may go after all

Lot I think depends on Cardio as it does seem he has a problem with his heart that may or may not be linked to pots we have to have a longer trace done

Erm I'll be nice but I admit I have some tricky questions to ask various Drs a lot centred around lack of support and information for parents and even more so when your child has complex needs as everyone likes to pass the buck

See that's when you need the dictaphone THC, when you get to ask a pertinent question, preferably 1-1, then record it, then type it up for us on here!

I was being a bit tongue in cheek about being nice, as Dr N was really quite nervous about the conference .

Could you ask something along the lines of "why does a parent (or indeed a patient) have to be pretty bolshy and forceful to get doctors to accept that actually people (and in particular children) DO actually have pretty rare conditions? Yes, you need to exclude the more common things first, but when you're left with only one thing it can be (in our case, PoTS which has a pretty straightforward diagnostic test which can be done in a GPs surgery and takes 10 minutes with basic equipment) why do doctors persist in saying "no, it can't be that, children don't get that", or "no, it's very rare". What do those doctors do with people who haven't (or aren't able to) educate themselves as well, or feel that the doctor must know best? For example, if I hadn't been a pushy nightmare, DD2 would have been in a psychiatric inpatient unit for a good chunk of this past year, entirely due to the paed having made his mind up what was wrong before he even saw her.

And it's precisely those type of doctors who are difficult to reach with any kind of educational programme, as they don't think they need to know more, or think differently (I see this with another medical condition - the charity I work with have a medical education arm, and it can be a real struggle to get GPs to even look at information you put in front of them if they've already decided they know what's what).

Maybe a query which can get someone to set out the pathway through the NHS we should be following if we suspect our DC has EDS/whatever. So GP -> rhemy paed/general paed -> specialist? And if so, which specialist?

And (i'm on a roll here ) can the medical people please realise that schools are a lot happier to provide the help needed, IF they get it in writing, so the consultant needs to do that as part of their report back to the paed/GP. And generally letting DC have a diagnosis of a named condition makes things less scary for schools and teachers, and that makes it less stressful getting support in place.

Feel free to cannibalise any of the above (also am happy for you to mention the psych inpatient bit as happening to a friend's daughter - rather than an internet sprite - as thats' quite a shocking state of affairs now that I look back at it, and MAY get across to doctors that what they do or don't do has a massive affect on all sorts of things, not just the actual symptoms they're being presented with).

Totally agree with you Midnight.
How do consultants get the message to dyed in the wool paeds, who don't appear to keep up with new information?
In writing a letter to the GP re links between hypermobility and IBS - which my paed doesn't believe - I found a useful link on.......NHS website!!
How are they going to get their diagnostic criteria through to this type of paed - and there are many of them.
I also agree that it fills me with fear that we are the educated stroppy bolshy brigade. What the hell happens to those that aren't? Years of unexplained pain etc etc.
There should also be diagnostic criteria in A&Es. Surely if a child keeps going into hospital with repetitive sprains, dislocations etc etc, there should be a diagnostic tool. My DS has been to A&E 5 times in the last year with the same joint. We have never had any referral anywhere else. I am honest with them. I tell them he is hypermobile, who his paed is etc, and they ignore it and send us away each time. I don't even get a follow up with the GP/School nurse etc
Schools should also be very aware of do's and don't's. In my DS's school, the teachers regularly 'teach' yoga. DS can barely move afterwards. The teacher puts on a dvd and goes through the moves regardless of ability.
I'm thinking that for all people that are dx or suggested that they are hypermobile, that there is a checklist of other symptoms. This should be flagged on your GP's system. It may be that they have been to the GP with individual symptoms, they have not been joined up, and a dx is missed.

Hope everyone is enjoying the paralympics. DS2 watched some of the swimming with a puzzled look on his face and then asked me why they didn't take their wheelchairs in the pool!

auntevil My DS2 quite fancies being a dr. He wouldn't be able to dash off if someone bleeped him so he'll have to be like one of the drs on casualty who ignore their bleepers and go and have a long conversation on the stairs with someone they had a one night stand with the night before . The geneticist asked DS1 if he wanted to be a dr when he grew up and he said he'd rather be a transvestite .

midnight glad you and your DD had a successful appointment.

THC Hope you get answers to your questions at the conference. I had a dictaphone at university because my hands don't do note taking very well (because of dyspraxia and eds) but it didn't pick up much so DH used to scribe for me.

ellie - I am liking the sound of your DS2. He makes some fair points, although I don't see why he can't be both a DR and a transvestite
DS2 hasn't quite got the gist of the paralympics - and he's going next week, so I hope he understands pdq. He said in the swimming that it must be easier for the swimmers with no arms and legs as there's less of them to swim through the water. By default he then said that the olympians must have had to work harder. Errm, other way round DS2! - although they all work hard (disclaimer)
Does anyone know if there are any athletes with dyspraxia/EDs/PoTS etc? Are they even eligible?