Hi, daughter with HMS, what next?

[charlotte22]

My name is Angie, I have a daughter who is 13 today. She was diagnosed nearly 2 years ago with hms after twisting quickly and tearing the anterior ligament in her rt knee. After this it was physio (intense which she still does ).she scores 9 on the beighton scale, and now has a sublaxing thumb and a left shoulder that articulates into strange positions . Her condition is familial as I am a medically retired nurse who spine ligaments overstretched and have now left me very immobile (I’m 7 on beighton scale). My main worry is that she since a small child has fallen asleep a lot (the week before last she slept 13 hours after school and is falling asleep in class ). I took her to the gp but he said she is growing !!.so why has she done it all her life ? He does not believe in hypermobility. Please help where do i go from here. It was a senior paedatric physio who made the diagnoses and mine as well .
grateful thanks for any advice
angie

[Rosie]

Hi Angie

and welcome to you and your daughter. I don't want too overwhelm you with information so here are a few ideas:

Find a new GP. Can you change to another in the practise? If your daughter has a diagnosis of HMS this cannot just be ignored.

Talk to PALS (Patient Advice Liason) about your current GP

Read through the topics on here, especially in the 'Parenting childre with HMS' section. You will see that your daughter's issues are common to peeps with HMS.

Ask for a referral to GOSH - they have an excellent progam for kids with HMS.

welcome again

Rosie

[charlotte22]

Dear Rosie ,Thankyou at last i have a place to start .would i need a gp referral for gosh appt ,we had even considered going to see someone private regarding this . Today is her birthday and she has come home with swelling and bruising after trying to complete a 4 by 4 relay ,so it,s birthday cake & presents and ice packs and once again she is fast asleep .
It,s just great to have a like minded person listen to what you say .I'm sorry I posted my request in the wrong place i'll learn .
Once again thanks kind regards
Angie

[Rosie]

Hi again

Yes, you will need a referral for GOSH, either through your GP or a rhuematologist, or even a paediatrician I think. There is a section on GOSH here, so have a read through some of the relevant threads for some more info.

Rosie

[sueiz]

Hi Angie,

welcome to the boards

My daughter will be 14 in under month, & I'm currently suffering with slipped disc after years of spinal problems, so feel we have things in common!

Theres loads of advice & info on here, everyone's so kind & supportive. Does the school know and/or support your daughter? There's a download available from the main site which is especially for schools & explains the symptoms & problems of HMS.

My daughter is (slowly!) learning she can't live at the same pace as her classmates. Forgive me if I've got the wrong end of the stick here, but is your daughter trying too hard to be "normal" & so overtiring herself? The muscles in HMS sufferers have to work much harder to compensate for our lax ligaments; both my daughter & I have trouble giving in when our bodies let us down, and so end up exhausted, which then means we're more emotional & sometimes make the wrong choices; a vicious circle, & leads to fireworks sometimes at certain points in the month...lol!

Find a GP who's sympathetic & willing to learn with you. It's frustrating, but unfortunately there are GPs out there who consider it a slight against their professional pride to have any gaps in their knowledge highlighted otherwise if you're able, go private, getting the help you both need is vital if you are to make the best of things.

I'm still coming to terms with the fact that this is not going to go away, & have days when I rage at the world & God. However, as a wise person once said s*** happens but it's how we deal with it that counts. You only know how strong you are when you have no other option but to be strong.

Gentle for you both, hope you find all the care answers & love you need here.
Sue

[charlotte22]

dear Sue,
just reading your e mail and the 2 from the admin staff make me feel i'm am not the paranoid mother i think i am .
I'ts so good that you reiterrated a young person trying to contend and keep up,my daughter is lucky ,she has made a huge network of friends who know about ,but don't fuss about her hms .Unfotunately she had one person that was once her best friend who had a injury to her ankle,but will not do as she is told by physio,s and is doing no games and has not for a year .

My daughter tried to explain that you have to sometimes go through things ,like it or not and tries to do what she can she loves sports, dance school and life in general, which is great.She sounds exactly the same as your daughter and say's I am being constantly over protective ,but you like me know the long term outcome ,i was diagnosed 2 years ago by her physio until then no -one had been able to find out why Ihad had to retire at 45 due to my back hip and leg pain which i am now onmorphine patches and oral morphine for.

This so called friend last week on sports day gooded her into doing an extra race 4 x400 metres and to try and prove herself she did half before falling over and came home with a bruised swollen knee with pain into the bargain ,to this friend "she puts it all on " this has caused her to think again about their friendship .Earliar this year she joined a christian youth group and has become a christian off her own free will ,and say's she has to forgive her friend for her spiteful outbursts and cruelty .I have tried to explain that life is not always simple and as you say teenage years are difficult .

School know from copies of consultant letters she has hms and her games teacher is wonderful ,she say's Charlotte knows her own body and so lets her govern her ability herself. As for gp 's thats a difficult one ,he has been so good with myself for over 4 years ,it makes it difficult ,I have now joined the assoc and so may try to take some of the literature fo him to read,"they can't be good at everything .
She does not want to be labelled but i have told her to talk to the young people on the forums so she realises she is not alone .

Thankyou for taking the time to e-mail to me ,and bless you for your kind wishes and advice .
Kind regards Angie.

[sueiz]

hi Angie,

thanks for that lovely reply.

As a Christian myself, I'd like to say to your daughter that while we are called to forgive, we are NOT called to be doormats - she must stand up for herself & challenge injustice too!

I hope she's able to continue to offer friendship & good old fashioned honest truth to her friend, & I'm so glad she has such a wide network of supportive, understanding mates - so important to help us bendies accept our limitations

You mentioned you've also had to retire due to HMS affecting you - how are YOU doing? I don't know about you, but I find it very difficult to be honest (except on here!) about how difficult each day can be, as I'm trying to protect my kids from worrying too much about their own futures (& me!) so I hope you're able to share how things are for you too. What a wonderful Mum you must be, all thoughts for your daughter's helath & wellbeing, bless you!

Hope you're both enjoying the summer hols!
Sue