advise me, wise people

[kit]

I am really getting very unsure about what I ought to be doing for my daughter. When she was first diagnosed it was just her ankles, and the rheumy at first thought insoles and physio should sort her out (oh yeah).

Then her back went and the podiatry clinic who were doing the physio thought she ought to see a chiropractor. The chiro was very good at first, but lately Katie's condition has deteriorated and it was getting to the stage where I felt she was just being manipulated too much and didn't know if it was good for her, so stopped going.

Then I got her GP (who is understanding but obviously not a specialist) to refer her for her back pains- so we got to see an orthopaedic specialist at the hospital. He says there's a bit in her kneecap that is too big so he wants to operate on that. He has also booked her in for an MRI scan on her back. But he said he didn't think she was hypermobile because she couldn't touch the floor with her flat hands....so hmmmm, that doesn't sound so good does it. Maybe she does need this other operation, but I don't want her treated by someone who doesn't understand/believe in her condition.

She is also going to see the rehabilitation clinic for Cognitive Behaviour Therapy, which I think is going to be good in itself, but won't help me with the practical problems I'm struggling with: when should she be made to push against the pain, when should she be encouraged to rest and be careful etc etc.

So what do you think, wise folks, should I go back to the GP and say Errr, what we actually need is a referral to GOSH? Or should I leave it? Shall I let her have the operation or not? Shall we just struggle on? Should we go back to the chiro? It is now close on 3 years since she was diagnosed, but I still don't feel we have ever spoken to anyone who really knows what she needs.

[Kel]

Well I've been told I'm hypermobile by a plastic surgeon, two rheumys and a physio, and I certainly can't touch the floor with flat hands - that measure is far too simplistic to discount hypermobility. I think that your daughter needs a full assessment by an expert, preferably someone who understands the Beighton Score or a similar gauge of hypermobility.

In your shoes, I'd push for the GOSH referral. Sounds like there may be something unrelated wrong with your daughter's knee that needs surgery, but sometimes surgery can by risky for us wobblers. You might want GOSH to review any plans for surgery, to ensure that the benefits outweigh the risks (as far as anyone can ever predict outcomes).

[Fiona-Jane]

i agree with Kel- push for the diagnosis.

and the hands on the floor test is only 1 of the tests of the beighton score . did they check the other 8? and apparently you only need to score 4 out of 9 to be considered hypermobile when the beighton score is used.

its best to see the specialists. my orthopedic consultant wanted to operate on my knee a little while ago, but then i was referred to prof pope who told me it wasnt my knee that was 'bad', it was my ankles rolling inwards when i stand up.....nothing wrong with my knee, apart from the dysplasia (which is 'normal' for my joints! ) i was lucky- if i wasnt referred to him i would probably have had my surgery by now...

and i prof pope also warned me that us bendy folk dont benefit too much from surgery, and quite often it makes things worse. he also said that we often take longer to recover. so id make sure that you consult someone who is famililar with hms so you know the surgery is gonna be helpful before she has it done!

hope this made sense- im sooo tired tonight that im probably typing nonsence! had a rather busy day at work!

good luck

fi xx

[Sandy L]

A second opinion from someone familiar with HMS would be a good thing before proceding to surgery. Surgery may be just what is needed, but it is a one-way trip; you can't undo it. In general, any such step should be made with care.

[Retro]

he said he didn't think she was hypermobile because she couldn't touch the floor with her flat hands.....

She has a problem with her back Did he ask the question "has she ever been able to put both hands flat on the floor"?

Anyway, that is irrelevant in the scheme of things as as Sandy and FJ have said, that is only 1 of the 9 points on the Beighton Criteria. I can put both hands flat on the floor but prefer not to because of my hips.

My son is also very bendy, he can't even touch the floor but he can totally gross his Dad out with his bendy elbows and winging shoulder blades which is good for our amusement if nothing else

Anyway, I really don't think it would hurt to get a second opinion from one of the Hypermobility Clinics (GOSH being the obvious choice because they specialise in kids). I don't know where in the UK you are so it could mean a battle with your local NHS Trust but in the end it would be worth it.

Take care,

Lindsey

[kit]

Thanks everybody, you confirm what I was thinking. She has already been diagnosed by the Orthopaedic clinic in Oxford and by a rheumatologist and paediatrician here in Soton, but that was before she got really bad, and I don't think we have seen anyone who really has been able to advise us much on everyday life, little things like how much should you push against pain, when is it ok to have a joint manipulated back etc. All they say is 'do these exercises' and 'on no account use a wheelchair', but they can't really explain what you should be doing instead of the wheelchair (miss your bus? stay home from school?) or what you should do when the pain is too bad for the exercises.

[hannah]

Kit, just thought I'd say that people in my family have seen 3 different consultants (including paediatrics) re HMS at the nuffield in Oxford. I can categorically say that they have limited knowledge of HMS.
One told me I was very mildly HM and should stop worrying and exagerating pain, the other thought the only thing I needed was a generic chronic back pain rehab course (I sublux all over the place) and that my wrist pain was from my neck (wrists actually sublux). I was later diagnosed as severe EDSIII by UCLH and in need of specific phsyio for pretty much all of me. My kid sister was told she wasn't HM - again, diagnosed EDS at great ormond (recurring shoulder and SI dislocations). So I would not trust them to make the best decisions - they aren't always wrong, but they don't know enough about HMS to give the best advice.

(I hope this is ok mods - I have tried to give a fair comment without names)

[kit]

Thanks, Hannah, that is actually very helpful for me to know. It felt like a big step forward at the time- because we had basically come from a doctor who told her she was making it all up as a result of sexual abuse (never happened), and then a couple of doctors who knew the name of the syndrome but not much more. But I am beginning to think more could be done for us, that we are left to make it up as we go along.

[naama]

Hi Kit,
I have been down the manipulation route before and have been told categorically by two people who do understand HMS not to go down that route again, that it does more harm than good and at best only gives temporary relief whilst long term reducing the stability of the joint.
As for the pushing against the pain thing, I would generally say don't! Having said that, it's virtually impossible to go through life without some pain. Is her pain medication adequate? I usually work on the basis that doing somethign that causes pain is not good. Your body responds with pain for a reason. However, if doing something aggravates existing pain then it may be that you have to live with that for a while. Of course, I'm no doctor or medical person and that's only what I have been advised. I would definitely push for the GOSH referral. I can't begin to describe how much being seen by people who believe me and know what to do to help me has done for my self confidence.
As far as the surgery is concerned, if it was down to my local doctors I would be on the waiting list for my second shoulder surgery. One appointment at UCHL and I am going to Stanmore to see a specialist shoulder team to see what the best option is.