hasson or grahame? Gosh or clinic?

[zoe and eva]

hello again,

i'm just about still in the fortunate position that i have family medical cover from work. i had a cycle accident last october that has left me in tremendous pain and working at a computer is particularly difficult. typical that that's what my job is... anyway, the cover is still there.

my daughter is nearly five and she's much more hypermobile than i was at that age. her legs are a real x-shape and she does that w-shaped sitting with very low muscle tone. today's her first day at school so i'm now determined to find out what i can do to help her.

i would really appreciate any advice on who to see for kids:

i went to see prof grahame last year, and whilst he was very helpful and discovered the pain was being exacerbated by rds, there wasn't any follow-up. we live in cambridge and it's a way to go to london and something i can't do on my own with eva so wondered if anyone could recommend a rheumy in cambridgeshire? the consultants here are ////////
Mod Edit - names removed

i'm not sure whether it's better to see someone here who isn't so specialised, but knows physios around here, or to take her to london and try and combine it with a physio appointment at the same time to avoid having to make the trip twice. know it sounds feeble - london's not so far, but is a big hurdle at the mo.

i think london is the best thing to do, but then there's the choice (lucky, i know, to have it) of GOSH (aren't they exclusively NHS) or UCL (where i saw prof grahame) or another clinic that he and sue maillard do? does anyone know anything about these?

sorry - complete stream-of-nonsenseness, but feel i've put off doing anything for her for far too long and would very much appreciate any help.


anyone seen hasson and grahame with their children - which do you prefer?!

best wishes to you all.

[TED]

Hi Zoe. My daughter Chloe has Hms and Me. I knew from when she was a toddler that something didnt seem right and when she was 3 whilst attending hospital for another condition it was finally discovered that she had hypermobility. The consultant Rheumatologist made nothing of it and I for years was left searching for answers to all the things going on with my daughter. We moved area a few years ago and Chloes care was transfered here and she saw different Consultants until finally she was give a Consultant Paediatrition, she diagnoed Hms and Me, she is very good but admits that she knows very little about the condition and is willing to do whatever it takes to help Chloe. So I asked for a referral down to London to see Prof G and she agreed and put weight to the request.

Anyway Chloe has a local paed physio and she has been struggling with what excercises to give Chloe as she also knows very little about hm and she has found Chloe a real challenge!!!!!

We are finally going to gosh on Wed and we will be seeing Dr Hassan, Prof G and Sue Malliard. They all work together in a team. Prof G over sees the team, I think. Dr Hassan is the Paed Consultant and Sue of course is in charge of the physio. I am fortunate as my daughters physio has asked if she can come to the appointment for training and she is staying to do see the afternoon sessions of physio. So that she can help other kids with hm.

As it turns out I have hm and all four of my daughter appear to have it to varying degree. I am taking Chloe ( 8 ) who has Hms and many problems with it and Carrie (5) who is easily 9/9 on the beighton score so they can have a quick look at her too.

Anyway the point I am making is it is better to have a Consultant and Physio locally for your daughters care but for the folks at gosh to oversee it. If you know what I mean. I think you should ask for a refferal to gosh find out there recommendations and work out a care plan to be worked on with your Consultant and local paed physio team.

It has been a voyage of discovery with this illness and the various things it affect in our kids. We as the parenst have to find out as much as we can about this illness and unfortunately push for the appropriate care. It has been a long five years for us looking for answers and next week i look forward, albeit nervously to what exactly they (the specialsts) think about my daughters. It will be great not to have to battle to make them understand what is going on as they know already how this condition affects people. As i have had to battle many times and been told that there is nothing wrong with my daugther by various people, but i know different.

Your 5 year old sounds similar to mine. I'll let you know what they say about physio. I think she should start physio but the physio says no, she doesnt think she should as she is so young.

Dont know if any of this helped. Sorry it was a bit long winded.

Take Care

TED

[bobbles]

Zoe

My daughter Millie, is also 5 and has HMS - although fairly mildly compared with a lot of the people on here.

I found that once she started "proper school" last September, that it was much easier to get people to see her regarding her condition. I came home witha list of stuff from her first parents evening in Nov, that she was struggling to do, plus a list of my own, and it seemed that once I was able to say that it was affecting her school work, that the appointments were quite forthcoming.

We haven't seen any of the specialists in this field, we've just been fortunate enough to have reasonably good care, and my daughter has been seeing our local paediatric physio for 3-4 months now, and it has made such a huge difference to us.

I would honestly say that if you can, then it would probably be best for your daughter to be referred to GOSH - I know you said you thought it was NHS only, but I am wondering whether if you saw someone privately with her, then maybe they would then refer you on to the team at GOSH?

I hope you manage to get the help that your daughter needs, and will keep us up to date with things.

Sharon

[zoe and eva]

Thanks very much, TED and Sharon for your help and advice. TED - good luck on Wednesday at GOSH with Chloe and your other daughters - will be thinking of you. Sharon - glad that you've had good experience eventually. I think physio might be helpful for Eva too. She is so much more bendy than I was at that age, but perfectly happy as well. And the first day at school went well, so that's a relief all round!

Thanks for taking the time to reply, as well. Don't know about you, but I find typing a real bind at the moment - think that's just my cycle injuries, so if I don't reply very often, it's not that I'm being rude...

Anyways, will try and have Eva referred to GOSH and then find a physio locally who would be willing to follow a care plan (I'd never have thought to ask for one of those).

Thanks again.

[christianne]

Hi Zoe
I have seen Dr Hakim, Prof Grahame and Dr Hassan with various of my kids/teenagers. It`s my understanding that Dr Hakim (and I think Prof G but I may bewrong there) no longer see children but refer them instead to GOSH and Dr Hassan. My son saw Dr Hassan and Sue Maillard at the same appointment and is now going to GOSH on the 17th Sep for the 2 week rehab stay. I usually book a hotel and stay overnight when i have to come up from Wales for an appointment(a cheap one!) because we can't manage the return journey in one day, you could consider that.Once you have been seen by whoever you choose, he can write to your g.p. asking for Eva to be referred to paediatric physio and also o.t. and podiatrics if necessary. It`s a complicated issue isn't it?
Christianne

[Ejem]

You can definitely see the team at GOSH privately, generally the appointments are after 6pm. We have also seen Dr Hassan at the Garden Hospital in NW London. He and Sue Maillard are fantastic with my two children age 6 and 3 who both have HMS.
Karen

[Amanda]

Hi I have a 3 year old and we saw Dr Hassan a couple of months ago and Sue Maillard last night.

Both were seen privately and I cannot recommend them both more highly. We have seen what feels likes heaps of Docs but in fact in total equates to 5 consultants and in terms of EDS are absolutely streets ahead.

Dr Hakim also came highly recommended for small children and he is at Whipps X if I remember rightly.

PM me if you would like more information.

[jcwilson]

Hi,
I am not to far from you,I am in Chatteris, so about a 30 minute car ride away.
I looked all over and there is no clinic here in Cambridgeshire.Sylvia was under the local team here ,But they had so little knowlege of this condition.Sylvia is under Great Ormond street .While being a little bit of a treck, we have had the care she so needs there. We go by train and then walk to the hospital ,which is about 10 to 15 minutes away.Sylvia at first went in a pucsh chair but now can manage the walk due to their fantastic physio program.
If you have private cover , you can book a private appointment yourself at portland street and you dont need a referal. We saw Sue Maillard there and she was superb. Sylvia is lucky enough now to be under the team on the NHS.Sue I know does not go to Portland street anymore,But perhaps one of her team still goes there
I hope i have been of some help to you
Julianne

[Alison C]

Hello

Yes just to add that Sue's exercise programme does reduce the pain for us, and enable us to do more for ourselves. Thank goodness for Sue's HMS physio programme.

Getting to GOSH is a big trip for us but honestly it is well worth it.

If you have a child with HMS, please do seriously consider asking to see Sue - it took us ages to get NHS agreement to see her but we did it in the end.

Can anyone think of other topics to be included here for those of us who do Sue's exercise programme to help us with the GOSH adventures and home exercise programme? Isn't this a fantastic way of giving each other support.

Cheerio
Alison

[Amanda]

Zoe - are you any further with your decision?

Amanda

[zoe and eva]

sorry - long time, no reply. saw dr hakim and sue plus podiatrist. very helpful. exercise, exercise, exercise to keep strong seemed to be their recommendation, bar trampolining. also, to not try to make her hold her pen differently/"correctly". should have followed up with more physio and podiatrist, but my pain is the limiting factor re travelling to london - ugh.

bye for now,
zoe

[Amanda]

Great to hear from you but sorry to read of your pain Perhaps you can share the exercise regime and it will make a difference for you too.

Interesting you said Dr Hakim - I though he had left!

Amanda