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dd's hypermobility

(17 Posts)
babyjane67 Mon 18-Mar-13 11:10:10

sorry pressed wrong button!!!hadnt finished msg!!
she had effectively discharged her.anyway6months later&her lefts still the same so i ring&she was very short with me&said there was nothing else she could do but she would give me an app to see orthopaedic ppl which we did last yr.
they said her bones are fine&that they want to see us again in2yrs which is about a yr now!anyway what im trying to day is her its a yr18months on&her left foot is no better!!plus her right foot looks as though its going bk over the way it was before when it had righted itself!!
so what do we do now??try physio again but ask for another one?or something else?or are we just panicking&should give it longer?
we're still seeing orthotics for boots&insoles(which they custom made for her last time as left foot wasnt changing)i cant remeber when we had those last pair!think it was june time but may have to ring them&find out!
weve als seen a paediatrician 18months or so ago as she was complaining of pain in her joints but all was normal with that.
can anyone help on what we should do now?
sorry for the long post

babyjane67 Mon 18-Mar-13 11:19:30

dont know whats happening with these msgs today but first one seems to have disappeared!!
my4yr old dd has hypermobility diagnosed at18months
shes had physio which helped her walkj just b4her2nd birthday
after a short while she discharged her saying that there was nothing else she could give her exercises etc as she was 'a very determined little girl'&was doing things herself.
i rang her a couple of times bout her left foot as there never seems to be any change in it
she said to give it6months&if still no change to ring her again which i did&thats when she was very short with me!!
if you managed to read all that thankyou!!

elliejjtiny Mon 18-Mar-13 17:04:20

My DS's all have hypermobility. DS3 sounds the most like your DD and he was discharged from physio as soon as he started walking. It doesn't seem right to me but apparantly in our health authority children don't get physio once they can walk.

babyjane67 Mon 18-Mar-13 17:47:30

ridiculous isnt it?!
i havent heard back from orthotics yet so will ring again tomorrow
dont really know what else to do!!

auntevil Mon 18-Mar-13 18:38:05

In our PCT you have 1 course of treatment i.e. when they believe that they have achieved their aim (in your case - walking) and then discharge. the system is then supposedly easy to re-access when you need their support again without having to go back into the referral pot.
Wonderful system - really works hmm

babyjane67 Mon 18-Mar-13 19:22:50

do you think its worth asking for more physio but with a different one?

auntevil Mon 18-Mar-13 22:37:26

It's always worth asking. I think that if you say that a situation has changed from when the last treatment was offered I.e. thank you for helping her to start walking, but now after much practise her left foot still hasn't managed to rectify itself, they might be inclined to re-address.

Walter4 Tue 19-Mar-13 07:54:04

Had the same problems with NHS service. I ended up with private consultation with Nathan Hasson at Portland who then diagnosed HMS and put us on to specialist HMS physio at great ormond st and podiatrist for Orthotic (nhs). Has had 3 years of all this and is no discribed as " strong " by physio last week!
Hypermobility needs to be treated with excercise not ignored till they are in huge pain!!! Makes me so angry that we get fobbed off like we are idiots, Nhs guy told me my so had no problems and asked why I want there to be something when there nothing wrong!!!

MerryCouthyMows Tue 19-Mar-13 07:58:25

Same here, DS2 discharged once walking effectively outside - which was 4y8mo. (He took his first steps at 3y7mo).

It's taken me till he was 9yo to get a re-referral, and that was only because his spins was distorting and he was dxd with kyphosis by the orthopaedic consultant.

He was seen by physio within 2 months of that, and is now about to start a course of hydrotherapy.

He's been re-referred back to orthotics by the orthopaedic consultant too.

He has severe Hypermobility, he scores 8/9 on the Beighton scale, which would be 9/9 if it wasn't for the kyphosis preventing him from putting his hands flat on the floor when he bends over because of the pain.

I've been told by the orthopaedic consultant that he is at risk of ending up in a wheelchair, his Hypermobility is so severe.

Yet once the hydrotherapy is done, I can guarantee he will be discharged again.

It's WRONG that they don't do physiotherapy based on NEED, rather than budgets.

Only those wealthy enough to PAY for physiotherapy are able to get ongoing therapy for their DC's, it seems. Which I'm not.

MerryCouthyMows Tue 19-Mar-13 08:02:50

Though I AM paying privately for an EDS assessment by Prof G in May. But that's because my PCT treat EDS as Hypermobility syndrome and 'it won't change their treatment of the patient'.

The PCT don't even test to see what type if EDS someone has, despite the fact that if it is the vascular type, it can cause aneurisms and strokes later in life.

I'm paying because I AM concerned that it is vascular EDS.

God knows if a dx from Prof G will be accepted by my local PCT, but I feel it needs to be done.

Going to cost me £300 though - and I'm on benefits.

This is the state of the NHS.

Walter4 Tue 19-Mar-13 08:05:06

Merry I do agree, however I see physio 2/3 times a year and the program is given for us to do at home daily plus at least 17 hours of outside plays a week...they insisted on no buggy from 2 , its tough but its worked.

auntevil Tue 19-Mar-13 16:58:01

DS1 has seen the physio every 2 months for just under a year.
I think he might have been discharged, but we got a confirmation of EDs recently, so adds to the 'need' criteria as it is still not determined as to what type (1 or 3)
The programme has shown to be working though, and we have noticed a difference, so perhaps that is also why we are kept on the books?

IShallWearMidnight Wed 20-Mar-13 08:07:31

DD2 was diagnosed with EDS last year at age 14 (she doesn't have the same level of physical issues as a lot of you here), but despite a letter from her consultant, the local NHS physio team wouldn't see her "as she's not in any pain". Which obviously they managed to diagnose without seeing her hmm. So we're paying for private physio, and hoping that the NHS podiatrist who did see her, will work with the physio to sort out exactly what she needs.

Whereas DD1 (in a different area) is getting fortnightly NHS physio sessions because her pain levels are so bad (despite her GP being reluctant to refer to the consultant, and the consultant dismissing all my points - "you can't blame everything on hypermobility Mrs Midnight" - um yes, you can blame joint pain on that, and fatigue, and in the circumstances I think I am justified in checking about POTS). Anyway....

It does seem to be slightly better once you get to adult physio, at least you don't need to go through the paediatrician level first.

babyjane67 Wed 20-Mar-13 16:09:17

thankyou all for yr replies&sorry i havent been on again til now!!
walter4,yes thats practically what the physio said to me in not so many words!!she was brilliant to start with&we could ring her about anything&it'd be no prob but in the end she just spoke to me like i was an overprotective,overworrying mother!!
my dd hasnt complained of any pain now for little while,just the odd thing now&again which i think are prob normal kid stuff.she is,only now,starting to walk up the stairs normally,but its not all the time.shes still mostly going up one step at a time&always with the right foot leading first.the last couple of days shes tentatively started lesding with the left(worst)one but its very slow going for her bless her.
we couldnt really afford to go privately unfortunately but will have to get them looked at again.
the orthotics ppl&i kept missing each other yest!hes back in again tomorrow so will try again to spk to him then

CouthySaysEatChoccyEggs Fri 22-Mar-13 00:18:25

walter - no buggy from 2 would have been fun when DS2 didn't take his first steps until 3y7m. grin

I might have replied to them on word that started with 'F' and 'O' had I been told that!

But considering he only got 6 physio sessions, that finished when he was 2.6yo, it would have been hard for them to tell me that anyway!

babyjane67 Fri 22-Mar-13 19:53:10

hi all
ive got an appointment with orthotics coming through post&am waiting to hear back from orthopaedic will see what happens with them&then see if we need more physio

babyjane67 Thu 28-Mar-13 19:12:21

just an update
ive managed to get dd an appointment with the orthotics team a wk today&also with the orthopaedic team on 3rd of may
will let you know what happens
thanks for all your help

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