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.

The neurologist we saw was like that. As soon as he saw we were all hypermobile he was all "It's obviously BJHS/EDS, have some physio, there's no point in seeing you again". Thankfully the paed is more understanding but as we're reluctant to put DS2 through the next stage of invasive testing (muscle, skin and nerve biopsies) when the results probably won't make much difference to him then she isn't really sure what to do with us. So we just plod on, seeing the paed every year and DS3 gets a bit of physio.

Aunt

Silly dr not linked EDS is a connective tissue disorder Abd the bowel is a tissue as is the heart !!

Ds2 gastro pretty sure it's linked to hid as yet undx EDS were of yo genetics for him next week

Moose wonder if GP will refer your mum to Proffesor Grahame on nhs at UCL maybe worth a shot

Can't report on Dr n yet looks like next week but she has arranged for 24 heart monitoring ds3 is all wired up but going home with .

Ds3 as has so many issues was refered for geneti. Testing but the orgibal is neg

But have friend in the genetics field said the nhs microarray is old style and not so sensitive . The best is next generation sequencing But not available on nhs and not likely be for 5/6 years

Ds3 was fortunate and on same study as Ellie Ds I think ddd study where means we get access to them but that's looking St development over all

Oh and EDS is genetic Proffesor pope agrees but seems both me and his father he reckons carry the EDS 6 gene hence how comes Ds has where in my other the dominant EDS 3 gene won out ( know I carry 6. But his dad won't agree be tested but were pretty sure

A d ds3 adds something extra all of his own

Hi

I have been on this thread before but then totally forgot about it!!

How is everyone??

I was just wondering if anyone here has experience of group OT/physio sessions??

DD has had OT and physio (which is still ongoing) and she has been referred to do a 6 week course called "Hop, skip and write"

Just wondering what it entails really.

DD finally had her first physio session last week (only waited 8 mths!!) and she did say DD will have "considerable difficulties" when she starts school in sept in reception.

School seem to be good so far, she is going to have 30 mins a day 121 OT/physio and I have a meeting with the HT to talk about what extra help she might need at school. So anyone with school age DC I would love to hear some tips.

So far she is going to need a foot rest and special scissors and extra help going to ICT classroom as its up stairs and help at lunchtime carrying her lunch tray.

DS had a joint OT/Physio course when he was in reception year. Can't remember what it was called, but there was a group of 4 boys, all of a similar size, and they practised self help skills by making it into challenges. They also practised cutting and writing skills. They also had to take their PE kits in to practise changing into them!
DS has some OT each day at school, various things; seat wedges, writing slopes etc. No stairs in school and he has packed lunch.
The biggest problem I have, which could be a back handed compliment to DS, is they often forget and don't think how an activity might affect him. Because DCs try to fit in and try not to look out of place, they often do things that over reach them, and us parents pick up the pieces. If i had a penny for every time i was told 'he looked like he was enjoying himself' ' he really wanted to join in' ' i didn't think until afterwards that it might have been too far' .....

Jhmm we have joint Physio /OT but not group Ds always has on his own

In school we have seating ,( OT provides ) special cutlery , ( I provide ) special scissors ( school supply ) pencils pens with grips school supply )

He needs adult on the stairs , lunch tray I'd carried for him . But he prefers packed lunch as chewing takes effort

PE he does not currently get changed but if does he needs adult help as takes to long and wears piedros

Ds will have minimum of 30 mins Ot a day ( statement ) and PE he need extra help Also supervision in playground to keep him safe 1-1 for swimming to

Wheelchair for getting to pool

He bd y3 September so it be a new school and suspect very bumpy at first Till I get them straightened out

Ds does not think how it will affect him but he stands out anyway so his difficulties more obvious to people iykwim

Fortunate that ds3 is very happy go lucky and his other issues stop him being aware just how differnt he is . So we get away without one of the most difficult things with EDS is the physlogical issues that come with realising how differnt they are

Pain wise since he has always had it it was pointed out to me that Ds never known what it's like tO be pain free and I cried hard at that

Thanks

Not sure how happy the school is going to be with DD essentially missing pretty much every Wednesday for 6 weeks (she will be able to go in till 11.30 ish) then I will have to pick her up early even though appt is not till 1 as she has got to eat before session iyswim.

That's the thing that worries me THC - how do you measure their pain. Me and the DSs all have a high threshold for pain. Today DS3 ran into a post - huge eggie, literally half a minute of tears, which I think was more to do with shock, then not another mention. DS2 shinned his knee climbing a tree. Blood streaming down and he did not notice, one of his friends did.
Do they develop this threshold because they have more residual pain?
I remember when we took DS2 to A&E as he had fallen and his ankle had swollen twice its size. The triage nurse asked how much pain he was in - and he pointed to the smiley face. Even she told him he couldn't be, it had to be worse
With DS1 it's the tiredness as well that I feel sorry for. It must be hard to constantly put more effort in than most of the rest of the class to do anything, yet he is given no credit for the positivity in which he handles it.
Still seething about several comments in his school report including: needs to be more confident in PE

Ug aunt I would be going and having words about it ffs twunt he not realise the effort it takes our kids to just even stand up right

Simpson

Ds3 attendance is dismal he has had only 2 days of sick rest is appointments . He has had two lots of hydro which involved 1 session a week but as distance he had to have whole day if ditto Physio and Ot and paeds etc

I just copy appointment letter to them

I had a few group physio sessions in about 1988-1990 and I loved it. It was like PE at school but only with other children who were bad at it. We also did art and craft stuff (I remember making paper trees and putting stickers on balloons to make them into people). We also had snack time and 1 person was in charge of the orange squash, one person had the lemon squash and one person had the biscuits (we took turns each week). If you wanted a drink you had to ask the person whose turn it was to do the pouring rather than the physio which helped our social skills. I think most of the other children had dyspraxia as we were working on co-ordination, balance, speech and social skills. It's probably changed a lot since then but I found it was really good.

At school DS2 will have hand rails in all doorways with a step, extra step so the steps aren't as high, step for the toilet, toilet seat so he doesn't fall in, a parent helper to open the toilet door for him (it's on a spring), push his wheelchair when he gets tired and press the button on the hand dryer. The OT is coming to reasess his needs in october and we will have a meeting with us, the school and all other proffessionals in november. I thought I was happy with that but when he was on holiday with my mum and dad he went to the children's group for 2 90 minute sessions with a one to one helper and he loved it so much. I'm now not sure whether to push for one to one at school. I'm worried about his social skills though as he will be doing less hours and he is so grumpy when he's tired, so thinking if he has an adult hovering around him all the time he won't bother making friends with the other children. DH has AS and DS1 is borderline AS so I'm a bit paranoid about social skills.

A good 1-1 won't hover intrusively. They will back off when your DS is happily playing with others. They should know that they are there to facilitate, rather than take-over. They can also manipulate social situations too, which might encourage your DS to socialise. Its worth asking if they have any 1-1 time planned - it may be unofficial hours such as the parent helper.

Hi all, tentatively checking in here as DS (7.5) has just been referred to a paediatrician for what GP is sure is hypermobility syndrome.

I took him along myself to ask if it might be and she was shocked at his joint movement but tbh he only really complains about legs hurting.

Reading mn, I can see a few other possible signs..he walked late being one, but not sure what the outcome will be or what to expect.

He has always complained about his legs hurting after relatively short distances and we've always classed him as a moaner , he enjoys karate and tries hard at pe at school, so much so he was awarded sportsman of the year this year at school, to our amazement, and many of his peers he hates football with a passion tho and this has always caused him the most pain/tired
legs.

Trying not to google and scare myself to death, I'm not really a health worrier, would rather deal with what I'm thrown when it happens rather than What Ifs. Not looking forward to possible battles in future should we get shabby treatment tho, our area isn't renowned for its excellent healthcare provision sadly!

So, just checking in really and reading with interest!

Hello Ettiketti - welcome I know relatively little in comparison to many on this board, but it has been a wealth of information. We're still early days too, and already a little with level of support from NHS etc.
My eldest DS(9) loves football - but I found that FA Skills was better for him than any of the little league type clubs. It - as it suggests - is more about developing skills and less about playing a match. There's maybe 10-15 minutes at the end of proper match in an hour and a half session. If you add that and the fact that he likes to be goalie (lots of just standing!) - he manages to just keep up. He walks like a little old man for the rest of the night though!
The only thing that the paediatrician has said to me is to keep him active wherever possible and use supports when the joints start going

Welcome Ettiketti. I have 3 boys aged 6, 4 and 19 months who all have hypermobility/EDS with varying degrees of severity. DS2 uses a wheelchair, DS1 is mainly just bendy and unco-ordinated and DS3 is somewhere in the middle. Hypermobility varies so much and google usually tells you the worst case senario. Most people who have hypermobility are like my DS1 I think.

Welcome Ettiketti

I am sorry I have been awol....my punishment is it has taken me ages to catch up

Hope summer is going well for all, we are fine, ds is having quite a bad time pain wise, but on the plus side he has learnt to ride his bike.....YEP WITHOUT STABILISERS!!!!!!!!!

Off to the hospital tomorrow to see rheumie....lasy appt was good, but was just him, this time is case conference so he will probably be back to his unreasonable, arrogant self

Auntevil - while I remember.......NOOOOO can't believe the paed told you to just support a painful joint and carry on. Prof Grahame said to me years ago that pain is your body's way of communicating with you, don't ignore it, if it hurts then stop straight away. Only this way can we hope to avoid permanent degenerative damage of joints, which will cause more problems in later life......argh Blardy ignorant drs.

sparkle I'm beginning to get that impression about DRs myself. Seems to me that they are all experts in only very small areas - and as accurate as an unchecked google on wiki in any other area. The paed that told me about about just supporting his joints as they got painful also claims to have hypermobility . She also reckons that he will need the most help with his wrists as he flaps when he runs. Strangely, it is his ankles that keep giving way that we keep having to go to A&E with. A&E just keep saying rest. Only the OT has referred us to physio - so hopefully we might get a better understanding there [said in hope emoticon]

I think a & e are right, rest and gentle physio are the only way. Paeds with a little bit of knowledge, but not enough are a dangerous beast.....can you get a referral to a rheumie who specialises in connective tissue disorders?

A&E have never offered physio, they just send us away each time with the soft tissue injury leaflet. It was DS's OT for dyspraxia that did the referral - which hasn't come through yet.
There was a thread yesterday about gait and walking. I made DS 'walk' for me today and it's so obvious he has painful and stiff joints. He is walking from side to side with very little movement in his hips. Looking forward to the physio appt coming through

Thanks for the lovely welcome, I have had a week off work with them this week and its been great - DS is recently off stabilisers too and he is SO much better on his bike than walking - rides for seemingly ages but within a few minutes of walking complains his legs hurt.

I think we will have to wait and see who we are referred to and what they plan to do about it if anything, I do work at our local hospital so should hopefully know the Consultant he is referred to which often helps (although it shouldn't!)

how is everyone?

The heat over the weekend meat that DD slept even more badly than normal, but yesterday's skating and swimming tired her out a bit, so she slept in till 10 this morning. I was "not very happy" about letting her skate, but I've made a conscious decision not to mollycoddle her and let her start dealing with things herself, so skating it was. But she hasn't fainted now for 16 days which is almost the longest she's stayed upright in the last year, which is fantastic.

We'll have to see how things go when school starts again, which is when she tends to get more stressed (although she has two GCSE results to collect on Thursday, and is fretting about her appointment next week - "what if the doctor doesn't believe me? What if we don't see her and just get a registrar who doesn't know what they're talking about like before? etc etc).

Pleased that your DD has had less fainting - and hope she's pleased with her results on Thursday.
Did have a long whinge re DS2's IBS written, but apple is playing silly b's and I lost it.
Midnight, I so get your DD's frustration at having to repeat everything to all and sundry - stresses me out too!

her attendance last year was 64%, so just having managed to turn up for the exams is a bonus . In reality though, she's hoping for 2 Bs which would be really great.

Keeping my fingers crossed for your DD's appointment and exam results midnight. We're fine, enjoying the chance to chill a bit more with no school and preschool. DS3 has got his tiny piedro boots and DS2 has got his new piedro boots on order and we are waiting to find out if he is going to get inserts/ankle splints to put in his pe shoes.

I've got DS1s appt through today for physio - yay!
His paediatrician didn't think it was necessary and he would only need supports as he got older, A&E just go 'oh' when the word hypermobility is mentioned and do nothing other than check that the swelling isn't a break! But good old (she wasn't!) locum OT who did DS1s sensory integration did refer. Unfortunately, she isn't still with the PCT - but one of the first that has done exactly what she said she was going to do.
So, next question. I'm assuming that she will give him a bit of an overhaul on the first visit - check how he walks etc? It has been a long time since DS has seen a physio, and at that point it was only really to concur with the dyspraxia dx.
What do I need to check they do, any particular questions?
Completely random, but did I see somewhere on something to do with hypermobility that cuts that gape and struggle to heal properly is connected?

re cuts - yes, it's to do with the connective tissue in the skin. There's also something called "cigarette paper scars" but I'm not too sure exactly what they are. The ED support group has this list of symptoms.