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.

Sparkle at you too - how dare you!
We are London based THC - just never know what childcare is likely, so find it hard to commit to future dates.
Dh once promised to cover a day out - then reneged. I was so angry that he shipped his mother 400 miles to cover instead.

THC - you are too kind....I am 41 and I look it! It was so lovely to finally meet you, and ladies she is just as formidable in real life as she is on here. Did you finally get to speak to Dr. Ninis....after barricading the door so she couldn't get out!

Why are you going to the school is everything ok?

Aunt - when I got home last night he was watching the grand prix it was after 6.30 and the children were still out playing looking like orphan Annie, with no tea inside them......hmm Good job I was earlier than expected! So I know how you feel about your dh!

The conference where to begin, well THC will have to comment on the Saturday, but for me the friday was interesting; lots about links with fatigue and chronic pain, PoTs, cardiac issues. Have been left wondering whether a referral for ds to Dr Hakim to discuss pain management may be a good thing. Might see how ds gets on over the next few months and then decide.

Actually just realised that I am only 40....just feel older.....been one of those days. Got a dreaded phonecall from school, but about dd1, who had hit a tree at lunchtime and has a gash above her eye.....stitches later, ds is now feeling unwell with high pain levels, dh is away and I am knackered already!

That sounds horrible for your DD - hope she manages to get a good nights sleep.
Good about losing a year though

Sorry to hear about your dd Sparkle, hope she's ok. It's awful when you get on of those phonecalls from school.

Would love to hear more about the conference when you and/or THC get a chance.

We've been for physio today - and been discharged, because the physio said she doesn't think she can do anything to help, as I know more about it than she does.

Ds is having weekly pilates/reformer sessions, starts swimming this week and we are going to give tai chi a go - well when my broken foot is better. I've also invested in a wobble board and dd and ds have invented a game where he stands on it and she throws all the felt fruit from her teaset at him and sees how much he can catch. The pilates has already made a big improvement in his core and his teacher is really pleased with his progress. We had to stop the circuit the physio set him as it caused him excessive pain and without fail he had significantly more subluxes and pain in the following 24 hours.

Other than that he's not been too good. Lots of subluxes and ankle popping and really exhausted, worse since he started all the exercise. He's also been having neck and back trouble and his bowel, constipation issues seem to be coming back. Asked the physio what she thought of all that and she said I should go back to the paed, but I know there's no point.

He had a really funny turn at the hospital this morning and ended up needing the day off. He went dizzy and faint and was white as a sheet. I think it might just be exhaustion, but am worried about POTS as he does have a tendency to have these 'turns'.

On the positive side, his new teacher is lovely. I downloaded the HMSA Guide for Schools and she read it that lunchtime and came back to reassure me that they will implement the recommendations and to say she had told ds to make sure he tells her if he's in pain and if/when he needs a break in PE lessons.

That sounds positive with the teacher Moose. I would always have a willing teacher over a 'knowledgeable' one. IME, their knowledge means doing it their way or not at all!
Was your DS at the hospital for the physio - or something else? Ds1 goes very pale in certain departments. He goes white as a sheet if he sees blood, or if we walk past someone that has any wires coming out (breathing equipment, drips etc). They call it white coat syndrome - which I honestly thought was made up, but my brother was dx with!
This chucking people off lists is ridiculous - and makes me mad. There should be a new list system. There should be an inactive list. This could be for anyone that couldn't be helped at the time, but also shouldn't be dropped as input could be required at any time. Then you could phone up, get an appt - even a cancellation, without having to wait forever. Does this statistically mean that they have completed treating a child? How can they say that treatment is ever complete with a life long condition? - Surely it will always be ongoing, and you should have access to medical input (however lame) whenever required.

He was just there for a physio follow-up aunt. He didn't even do any exercises and it was in the physio department, so no scary equipment or anything. Mum took him for his pilates/reformer session on Monday evening and apparently they did a few extra reps and added in some new exercises, so I'm wondering if they just pushed him a bit too far and he over exerted himself.

He was a bit pale and wan for the rest of the day, but we got him into his PJs when we got home. He lolled about rested on the sofa with his duvet all afternoon and was well enough to go out to tea. (It was a planned treat while ds1 is away on a school trip. We don't get to eat out much as it such a pita finding places that do vegetarian, coeliac food.) He's gone back to school today, still a little pale, but ok and wanted to go in.

Physio basically said there is no treatment for it - it's down to him/us to make sure he gets and stays fit and that's that. To be honest, there would be little point in staying on her list, as she knows nothing about the condition anyway and we had to stop the exercises she gave him because they were making him worse!

I have a question while I'm here. Swimming - I have read different opinions about swimming and BJHS. One is that swimming is good, as it's non-weight bearing exercise. The other is that it's not good as, because of the water support, children tend to over-extend their joints while doing the necessary movements for swimming. I know water based exercise (as in wading and moving around in water is good) but am now as to whether or not actual swimming is good. Ds is due to start swimming with the school next week and his teacher has asked for some advice and information.

DS has physio next week - so I will ask. Paediatrician seemed to think all non contact sport was good, although had a dodgy idea that he should just 'support' his weak joints.
DS1 is swimming today at school - so I hope he doesn't come back with any problems. He is also doing Hi-5 after school (netball - but it sounds too girly!). Thing is, DS doesn't complain of being in pain, but does damage his joints on a regular basis. As a mum, I'm caught between the devil and the deep blue. I want him to be fit and healthy, and he would naturally gravitate to electronic toys, but neither do I want him to permanently damage his joints (as I did). There is a chronic lack of knowledge and support out there, but until he spends more time sidelined, or complains of pain, I am going to keep him active. he still has football and golf to go this week!
An aside to this is how many top sportspeople are hypermobile. I think if managed, with no other extenuating factors (EDs, PoTs etc) sport is easier for them. DS2 is in this category. He's an original apeman - swings and bounds around. He plays football in an older age division, and has been earmarked as one to watch at the golf club, with a swing way above his age (he is 7 - he can drive a similar distance as a woman).

Agree re the being good at sport - DD was on course to be very good at trampolining (she had the best pike - where you fold over flat from the waist - in the south east [proud mum]) until her coach refused to train her "in case she fainted while somersaulting", and then Prof G confirmed it was especially horrendous for her joints. Swimming and cycling were both recommended as good form of exercise (cycling especially good for PoTS as it builds up calf muscles). Also dance (including ballet) was on the approved list, but to be careful about over extension - this is presumably easier for DD as she's a bit older and can understand why.

Moose - I think like all things a little bit of certain exercises is fine. My ds has really enjoyed swimming, but he has a list of strokes he must never do...the support of the water makes him far likely to sublux certain joints, therefore the physio and the rheumie gave us very clear guidance.... No breaststroke arm or leg movements as ds very hypermobile in hips and shoulders. Front crawl only if chin remains in the water at all times, to avoid him hyperextending his unstable neck....anything on his back is fine. What i would do is have a think about which are your ds' weaker joints and how each individual stroke might affect them and add them to his care plan to say not to do them.

over physio discharging, although I appreciate she probably knows nothing anyway. Our physio for ds is super, she sees him on a regular basis, and we adapt and change physio programme based on how he is doing. When he is going through a good patch we see her every 3 to 4 months, when he is struggling more, we see her more regularly. It should be adaptable like this!

Hi guys, sorry been away all summer - had a crap one, lots of issues with ds health and all the EDS related stuff - things getting worse not better, more dx but still no management plan from GOSH a list big enough to fill an A4 sheet, but still 'off you go then, it's too complex for us, carry on with Home Ed because we also don't want to help you find a school' - that sort of thing....and my darling Dad passed away, the Leaukeamia just couldn't be controlled any more........ but we did get high rate DLA, so will need to name change as sold Nev.!
As for swimming we were told no breaststroke and to use an aid for his core, so we use a swim-fin. He can't float due to not being able to stabilise his hips, his lower body just drops in the water. He sort of treads water, but loves it anyway.
Sorry, just read this - what a mizz, hope everyone here is ok, or as good as it gets! Lots of love and hugs everyone x

Hmm, ds2 isn't a natural sportsman at all, but then I wouldn't be suprised if he turns out to be borderline dyspraxic at his OT assessment. He still can't ride a bike and struggles even with stabilisers.

I was really good at gymnastics at his age, but my mum stopped me doing it after her friend warned her that it can cause permanent problems if done excessively too young. I was also into speed skating and horse-riding and was pretty good at netball, as well as loving swimming and diving. Incidentally, I was told not to skate, ski or horse-ride by my paed when I was a teenager. I'm still not 100% clear on what they were thinking was wrong with me at the time, but I was told that those particular sports would put too much strain on ankles, knees and hips. Of course I then proceeded to do both skating and horse-riding to excess!

Sparkle, interesting about the specific swimming strokes. Ds has just started to have trouble with his neck and is very 'loose' on his shoulders and elbows. Paed also said 'significant laxity' in hips and described his ankles as the worst affected joint.

As for physio discharging. I get the impression that there's just no-one who has a clue what to do with him and that's why they want shot of us asap.

Oh Nev - I am so so sorry about your Dad, and ds having such a rotten time. After the conference THC have come away with the impression that a certain medical establishment is not a good place to go for eds related things. We didn't meet a single parent who was happy with what they were being told, and I think I am right in saying that very politely and professionally most of the conference speakers, supported parents views as opposed to those expressed by a particular medical establishment in terms of management.....am I right in that THC?

Moose - dyspraxic type poor proprioception combined with poor core muscle strength are both found in EDS hypermobile type. My ds has both these in spades, but he does not have dyspraxia, and none of the processing elements of dyspraxia. One of things I picked up on sunday when the consultant discussed EDS, Chronic fatigue syndrome and Fibro, is that if patients do not have all three, rather they have EDS and that produces symptoms of the other conditions in some patients. I think that this may be the same for EDS sufferers who have dyspraxic physical symptoms....does that make sense?

Nev, crossed posted without realising it earlier. So sorry to hear about your Dad. Last thing you need is the hospital being evasive in terms of support as well. I have read a quite few .... ahem - interesting - things online about people's EDS related experiences at that particular establishment recently and none of them good.

Sparkle, I have long considered there might be something more going on with ds2 than just the hypermobility. He seems to have some sort of auditory processing delay, has some dyslexic type problems with letters and numbers (albeit fairly minor) and also some issues with his speech in terms of not being able to select the appropriate endings and tenses for words (eg I buyeded it at the shops, etc). None of it has ever been bad enough for me to seek out formal assessment, but I recently attended a Bibic course and a lot of what they said rang alarm bells for me regarding ds2. Which was a surprise, as I went to the course with ds1 in mind.

Moose - remind me how old ds2 is, cos some of that could just be normal developmental stages....

....cos my very able dd1, still says things like "oftenly" for often and others and she doesn't have eds or anything else....it iks just cute! She is 7.

is not iks

Hugs and HONK for you Nev. There is never a good time to lose a parent - but specially when things are the shape of a pear at GOSH. I hope you keep focussed with all the happy memories of him. Are you going to name your new car after him?

Interesting about the hips not stabilising for floating. Apparently it was the one thing that DS couldn't do today at his swimming lesson.

DS1 is dyspraxic and I kind of get what you're saying sparkle. There is so much co-morbidity on symptoms it must be quite a minefield to dx. On the other hand, I also think it is lazy for them just to assume all symptoms relate to either a dx of condition a or condition b. DS3 is also likely to have an OT assessment for his motor skills too

DS1 is nearly 10 and still gets his tenses confused - but then he still gets he/she muddled up too!

Thanks everyone, its been a tough summer, to say the least. Am giving up frankly with 'experts' as they dx you and then leave you to it, we have had years of diagnosis and as yet no management plan from anyone other than the Evelina, but trying to get everyone together to sort this is just an uphill struggle.
Amongst our dx combo's is the dyspraxia/dyslexia one which impacts on the EDS [now confirmed by genetics] and now it's his eyes too. Anyone know about 'visual tracking' difficulties with EDS at all - all collogen linked I know, but?........ this with the dyslexia and dislocating fingers when he writes is just fun, fun, fun when it comes to reading and writing, still more for the AR and the following Tribunal to get him into the right school.
Home Ed time now....... if I can get him off the ipad - still he doesn't realise that we've chosen 'educational' stuff on there too!

Thanks Sparkle, he's 8 and a half, but the things I've listed are things I've been fairly consistently worried about in the back of my mind since he was in reception year. He told me the other day that sometimes when people talk to him he has to stop and try to work out what order the words go into before he understands, because otherwise it all just sounds like a jumble. That was in response to me asking him why he just stares at me and doesn't respond for ages after I speak to him (I was a tad frustrated with him at the time and had, without thinking, accused him of being insolent. )

His teachers had a big push on trying to get him to recognise letter and number reversals last year and there was some improvement, but he still does it regularly with 2, 3, 5, 6, 7 and 9, as well as p and q, b and d, j and l. I have a friend who is severely dyslexic, as are her two dcs. She's a qualified dyslexia teacher and currently studying it at a higher level. She said it does seem like he is has something going on, but we stand no chance of getting any assessment or support via the school/LEA because he get's by and isn't really bad.

Aunt ds still muddles the tenses and sexes up as well. I know some of it is probably down to age and part of normal development, but just have this gut feeling that there's more going on.

I also found the thing about needing to stabilise hips for swimming interesting. Ds1 simply couldn't hold his body up in the water and we assumed it was due to the hypotonia in his core. I wonder if his hips had something to do with it as well.

So glad I came on to catch up !! I was going to tell you all that I/we have our 1st Genetics appointment today and to ask for any tips /advice on what I should be saying /asking but ....moose,auntand nev have reminded me tof other things as well..........Are we sure our dc's are not related !!

Ditto ..swimming and legs...I put it down to core muscles as well ....now not sure

Ditto speach/reading/numeracy(school in general really)

DS is 8.2 yrs in year 4(!) and on school action + and is due to see community pead next week to ,I presume....check for dyspraxia/dyslexia/processing problems ?? or have him refered for checks ?

Moose ...it was quite a few pages back that I said I had an appointment with a fab pead who got the ball rolling for me ....but I still had to push for origional appoint. Is school giving any extra help/support at all?

I am around till 1.30pm if anyone has got advice for me ...unless I can work out how to do MN on my NEW phone !!!(mind you ds will)

Bizzey - good luck this afternoon. Don't forget the full family history, plus and history of joint pain and subluxations and dislocations for all. Then the most obvious questions are about who will support and monitor from here.... rheumatologist? What about cardio screening, physio therapy, pain management, OT. I have never had an appt with genetics, but those are the things which spring to mind. Does that help?

Bizzey, the individual teachers have been great, but that's as far as it goes. I am not popular with the SENCO, so nothing has been done on that side.

Ds2 was on School Action for two years when he was younger. He was very ill with pneumonia and lost everything that he'd learned (numbers, letters - the lot). I think that has been used to 'explain' the dyslexic/dyspraxic stuff since then, as in - "it's just because he learned it all later than his peers - he'll catch up if you give him time".

Good luck this afternoon!

I've had a few interesting pms with IndigoBell re dyslexia and related things. I am of a similar opinion to her that gut and brain are very linked.
There is a 'brain fog' theory that stems from a leaky gut - basically, where what should have been processed ends up in the blood stream and clouds thought processing.
Dyspraxia is closely linked with dyslexia, is closely linked with ADD/ADHD etc. The idea is that you get the ears working, eyes working, tummy working and some of the symptoms we have all spoken about will be reduced - reduced enough to allow enough concentration to learn.
Oh, if only we had some answers! [very wishful thinking emoticon]

It is fascinating isn't it Aunt. There was definitely a big shift in ds1 when we removed gluten from his diet. His gut health is still a long way from perfect, but once gluten was removed it was as if someone flipped a switch and he was so much more 'in the world', iyswim. We always know straight away if he's been 'glutened'.

'Nightcat' is another MNetter who is very knowledgeable about all this stuff. She helped me a lot when ds2 was really struggling through exhaustion, impactions and severe constipation. He was so poorly, the GP was starting to get seriously worried, because he couldn't find a cause - turned out it was the movicol affecting his electrolyte balance. Apparently some children react badly to it and should only ever go on it for short term treatment, if at all.