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.

Ellie I'm in Herts Ds current school is north Herts so defintley interested

Were coming up to ds3 transiston day day at the new school on Tuesday ANC think teachers in for a shock as they never met ds3 before only read report

And seem think he is just a bit bendy

Corster

Physio may look at Ds and use the Beighton scale to see how bendy Ds Is only thing with that it does not look at all joints

Ot may suggest some finger excersicse and Physio may come up with program if Ds will comply sorry don't know how his autism affects Ds

Later on computers may be used but not normally till juniors .itsy be worth asking for referal to a paed with Paticular intrest in hypermobility or a rheumo though often they tend to wait a while

Thanks for replying, most of his joints are bendy, his elbows, knees, ankles, all fingers and thumbs.
His knees are an odd shape (don't know if that has any bearing).
Also he walks slanted (one shoulder is up one down) and like mr soft bless him.
He has always tip toed walked and was even in plaster casts for 6 weeks which made no difference.

Yes it can be caused by over extensio

Is the tip toe walking related to his autism or have they looked to see if the tendons are long enough at the back if there to short guess always option of Botox and serial casting

He had serial casting last year and did not work, they think it's a combo of his autism and the hypotonia, they did say last year that his ankles are very supple considering his tip toe walking.

Moose - I am so sorry you have had this response. I appreciate that you don't want to have to fight for dx, and it isn't fair, but I fear that is all you are left with. I think either Auntevil's or Bizzey's advice (can't remember which or both, sorry) is right. Your first thing to do is to write to Consultant, copied to GP, PALS and Head of Paed/or PCT. Explain you issues, lack of note taken with family history, fact with eds/bjhs you would expect all xrays to be normal (for god sake that is the point ), although appreciate physio and pain relief are the only solutions" at this point having a proper dx, which will support him in school and properly inform a physio, and give you a management plan.....then say if the pct feels that it does not have the skills base to definitvely dx whether it is eds or bjhs then a tertairy referral to GOSH hypermobility clinic is essential.

I know clinic at GOSH has been rubbish for THC - but this is supposed to be what they do, assist dx of EDS 3, and it might work for moose junior......... hopeful emoticon needed.

Corster - Hello. Sorry your ds is having problems. A good physio will be able to help with lots of the issues you have described - gait, improving core strength, although it sounds like the tiptoe walking is more complicated. Do you see a paed for support with the autism, because it would be worth discussing and seeing if you need a referral to a consultant with experience of hypermobility.

THC - I shall get to the conference in plenty of time for first session on the Sunday, will go and check what time it starts. Will just set off from home very early, will be a couple of hours drive I think.

Thanks Sparkle.

Dh and I are considering our next move at the moment. Mum has asked me to email Prof G's details to her so she can get a private appointment arranged for herself and maybe ask his advice about ds2 at the same time, so that's something.

On a more positive note, we spoke to the LEA about ds1's statement this morning and apparently they finalised it on Friday, so at least something is moving forwards.

Just be aware gosh do not recognise gut issues linked to EDS or infact EDS they ignored dx and their letters all say hypermobile rather than eds

THC do GOSH recognise a link between hypermobility and gut issues? Quite hoping that your answer is going to be yes (another hopeful emoticon required here!)

Everything I read about GOSH on here makes me even more infuriated with the medical profession!

Had a meeting at school today which was with the clinical psyc and head, TA and class teacher, as to how best to support ds's emotional needs stemming from eds. It was very beneficial, and the head was very proactive and as beautifully guided by the clinical psyc, she now has gone away to develop different recording strategies for the upper end of the school and ways of encouraging ds to use a computer and see it as a positive thing. Feel like we have a plan for the next year.

Aunt in one word no

Infact a comment was made about that gut issues are in their head . This was to someone who has actually had all the tests on their child and child is peg fed

That sounds like a good meeting sparkle so different from his last school

Well report faxed to The PD team just so gives them a bigger stick

Cat amongst pigeons as I given his OT and Physio copy of Proffesor G report which picks up things they missed including a 25% scolisis I kept saying and they said no it doesn't happen in young kids ignoring his EDS type it does !!they never even examined or looked also fact they mused the hypermobility in his spine at cervical and thoracic levels

Meeting new school head tomorrow that be intresting

Good luck for tomorrow then THC. They said scolosis doesn't happen in young children....or did I misunderstand...cos scoliosis is really common in many types of eds!

Good luck at the meeting today THC.

Glad your meeting was positive sparkle

(((hugs))) moose. I hope your mum's appointment is positive and that the statement has the right support on it.

We have good news and bad news here. Bad news is that after the OT came into school and measured up for the hand rails, steps etc she has dissappeared off the face of the earth. The SENCO told me yesterday that she is trying to get hold of her as she needs the paperwork by the end of next week or the alterations won't be done in time for september. The senco is also cross with the lady from the pims (PD or FA for those not in somerset) team because she came into school months ago and told the senco that DS2 wasn't that bad.

Good news is that after talking to DS2 and me the senco has realised that DS2 is that bad after all and she is thinking very seriously about applying for extra funding for him. This is a huge step forward as previously various professionals have been saying he won't need that and he'll be fine etc so now I'm doing my "mum is right again" dance although still wishing that I wasn't right and that he would be fine. I feel a lot happier about him starting school now, before I felt like I was going to have to throw him in a river and hope he swam.

Ellie - Good to hear the senco is listening...that can only help. I am a bit at your pims lady being so unhelpful. She doesn't really have a leg to stand on if the senco, parents and OT are making recommendations......sorry school are having problems getting hold of OT, why don't you try contacting her directly...it may be a scheduling issue with when senco gets release time to make phones calls.

How did you get on THC?

Had an appointment with consultant paediatric gastro today - at our hospital - although I know he is highly regarded in the south east - and I treble checked that hypermobility and gut issues such as IBS were related. He said a definitive yes. Bad news is he is letting GOSH run with DS3's eating/soiling/food intolerance/ IBS issues. I do have a get out clause if I need to see him again though, so not too worried.
Also had OT with DS1 today - and I asked her to have a quick look at DS2 and 3 re hypermobility, as they have no dx. She said that obv they would need the right professional to dx, but in her opinion they all were. All have dx IBS as well. Is that just a coincidence GOSH? - I think not!

Auntevil - is the consultant going to write to GOSH to confirm his dx, it makes it harder for them to ignore if he does. Good result for you with the consultant though, so well done, and if GOSH don't help then you can go back to him. Where are you going to go to get a dx for your other dc?

Aunt /sparkle just be very careful re gastro and hypermobility EDS with Gosh there's been so
E rather unpleasant happenings there

??? I know they refused to acknolwedge a link between eds and gastro for someone recently.....has there been something else. I am so about this so called specialist unit!

The important bit is that he confirms it in writing to you

Absolutely, that is the bit of paper you need!

Is this from the EDS team or from the gastro team? DS3 is seen with gastric problems rather than hypermobility problems. From what I've seen and heard about GOSH lots depend on how you're routed through the system.
I'm going to go back to the GP and ask for a new referral for hypermobility - as their general paed who we were referred to with gastric issues does not agree that they are linked. I might ask for a physio referral - and then take the results to their next meeting as they are on 6 monthly obs appointments.
Problem is that if i go back through her, she doesn't see a link anyway. Might be better seeing if the GP knows a better paed to refer to than her (their general paed). Why is every thing so political and overly complicated?

in some ways it's easier how I'm doing things - co-ordinating it myself without paed input, and telling the GP who to refer to .

Hopefully those of us seeing Dr N (me, THC, anyone else?) can establish if she is an EDS person, or just a PoTS person. Might be worth someone trying to collar her at the conference, as if she is EDS, that might be a way of bypassing any potential unhelpfulness at GOSH for under 13s.