Unsatisfactory Physio assessment

[Sheitl]

Sorry if I've missed another post on this. Please move if necessary. I lurk so haven't even introduced myself, sorry.

I have a 10 year old daughter who at the age of 6 was scored at 9/9 on the Beighton. She has tightened a little and now cannot put her hands flat on the floor. Her knees visibly bend backwards and she has been getting pain in them. She gets all sorts of pain in various joints, has poor core strength and is on the 7th percentile for Dyspraxia. Her posture is very poor as her knees bend backwards, her pelvis tilts forward and her spine bends back so that her shoulders are behind her pelvis. It's a bit like a backward S without the top curving forward. She also gets incredibly tired. The GP referred her to hospital physio for help with strengthening her muscles to help with the pain. We've just got back and I'm quite shocked by what she had to say.

She says Y is not hypermobile. She scored her at 2/9 and said that the fact her knees go backwards is caused by tight hamstrings not joint laxity. Her interpretation of the Beighton was very strict, she seemed to think that Y should be able to get her thumb to touch her wrist on it's own with barely any pushing towards the wrist. She said that her elbows were not hyperextending back enough to score yet I think they very visibly hyper extend and they look more extended than mine. I think if she tested me she would have barely scored me and yet I have been scored at 8/9 on the scale. The only thing that has changed since Y was 6, is her inability to touch the floor with her legs straight. I do agree that her hamstrings are tight but she seems pretty mobile to me. Y thinks sitting in the full lotus position is comfortable and I have to stop her walking on her knees in this position. She can put her ankles behind her head and likes to hold her foot next to her ear and pretend it's a telephone. I'm really struggling to believe that she is not hypermobile especially considering that I am, my mum and dad are and her 7 year old sister is showing all the sign too.

Y has been given some core stability exercises (good, she needs them) and some hamstring stretches. The only mention of her hand and wrist pain was buy fat pens. I didn't say much at the time as I am suffering with the usual brain fog and my brain wasn't quick enough. Now I've left, I keep thinking of what I should have said!

Could her issues really be just down to tight hamstrings?

[Bec24]

Hi,
We have a 4 year old with hypermobility, she suffers a lot of pain in her joints and especially her legs and suffers terrible tiredness. She was diagnosed by a local orthopaedic consultant who said her hypermobility wasn't too bad, she had slight tightness in her hamstrings and that she'd grow out of it. She was referred for physio locally who started her on core stability exercises. We weren't too happy with this as she was getting worse and ending up paying for her to see a specialist (as GP said they wouldn't fund it) who referred her to Sue Malliard at GOSH. She saw her about 6 weeks ago and said her hypermobility was very bad, with stretchy skin and muscles and other problems. She said if we had continued on the core stability exercises it would have got us nowhere, she needs specific muscle building exercises. She has been excellent and I completely trust her advice, she really knows what's she talking about and is absolutely lovely with our daughter. But she did say it's not going to be a quick cure and we have to work on her legs before working on anything else. Is it possible to get your daughter referred to GOSH? It seems strange that tight hamstrings would cause the tiredness and the other pain, not that I'm a expert! Or could your GP refer her to a Rheumatologist for a second opinion. I can completely sympathise though, it can be so frustrating! Hope you can some help, I have found advice on this website invaluable and it led us to Sue in the first place!

[barkingmad]

Sue is brilliant and has my complete trust.

i think it is common for us to have tight hamstrings if we have overcompensated in some way. Once they have been stretched and strengthened her HM could be very visible.

I would try your prescribed exercises and keep going iwth everything that is suggested and prescribed over the next 6 months. If that all fails to help your child then seek a referral to GOSH. getting interventions at the right time can lessen the degree of impact of HMS on a child and their family's life.

But these days you have to be able to say that the local services are not meeting your childs needs.

[cyberbarn]

Hi,

Ironically we just had our letter today confirming that Peter has Ehlers Danlos III! Also in the letter was the round up of that days observations (we had previously seen 'a member of the team' dr and this time it was the chief paedatrician so she wanted to see for her self) and it says:

Peter has signs of generalised hypermobility but with tight hamstrings and very poor muscle bulk.

During the appointment she actually commented that it sounds counter intuitive but tight hamstrings are very common in hypermobility. And they are actually a lot less tight than they used to be! In fact besides the pain in the ankles and feet it was the tight hamstrings that made me first see a physio. She got us to make a sort of wedge out of Lego to put under Peter's knees as he sat on the floor with his legs in front of him to watch TV and to lower the height of the wedge by one lego block a week. It took months but we got there in the end and he can now straighten his legs again, and hasn't had to keep doing the stretches over the wedge.

The tight hamstrings was explained to us this way. When the bones grow, normally the tendons are strong and they keep their length and cause the muscle to stretch and grow too. But if when the long bone grows the tendons stretch instead, the muscle doesn't have to and will be shorter than it should be.

So if someone is using the 'can they touch the floor with their hand flat' as a criteria, rather than actually understanding the structure of HMS, then they might think that tight hamstrings means no HMS.

I hope you can get a second opinion with someone that knows more about this!

Cheers,
Jennifer

[Gailj]

Hi Sheitl,

I understand your frustration.
OH was diagnosed earlier this year, during the consultation we asked about our youngest daughter, told him the problems she was having, (pain and previous unexplained dislocations) he agreed she was also hypermobile.
I took her to our GP with hip/knee/ankle pains and he referred her to physio, also to a paediatrician.

Physio came first.....
The physio decided that she had 'lax joints' and flat feet but did not score enough to be hypermobile, - he scored her 4.- I counted 7 -he did not take into account the hands to floor excercise, she can usually do it easily, but pain prevented it.
He gave her some core strengthening excercises that will eventually lift the arch, straighten the knees and align the hips.

Then came the Peadiatrician appointment....
I think he checked out almost every joint in her body! Not just the usual 9 point scale
He agreed she is very hypermobile in her lower half, and a bit up top. He also agreed that with time, the physio excercises will help decrease the pain, by strengthening the muscles.
He has also taken bloods to check for Arthritis, he was pretty sure there isn't any, but he just wanted to be sure.

I can't wait until the next Physio appointment, I can tell him he was wrong! Nicely of course.

I would certainly push for a proper diagnosis from a consultant, physio's are good but not that good

Good luck
xx