i'm loving this forum... so full of information
i'm seeing a few 'different' things relating to dmd

use of growth hormones
use of scooters before a power chair
low sodium diet

as this site is so big, i was hoping we could pool info, mention and point each other in the direction of anything interesting/different that might be of use

hope you don't think i'm being lazy... i'm just hoping to benefit us all :-)

anne x

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Hi Anne
I agree this forum is really great and have been looking for something like this for years. The only problem is that I am on the computer until midnight each evening scrolling through all the information on the forum. It would be great if we could have discusssion forums on particular issues and store them under different headings. Ross is 14 years old now and we are still fighting for extra physio sessions in the school he attends. The school is for children and young people with physical disabilities and Ross only has one physio session a week. When Ross attended a main stream primary school I had to take him once a month to have physio in a nearby special need school. I would love to him to have hydrotherapy but i was given the same excuse as Kelly that it was only for rehabilitative purposes.
Danielle said:
Hello everyone, I've only skim read the above, but I just thought I'd add a little something. Since I've been on this site, personally I realised how lucky I was to be in the U.K. I know the NHS isn't perfect, and I haven't lived in other countries, but two things have been really important to us:
The main once is children's hospices! They're run by charity, but they don't have them in the U.S. We went to Hope House, as it was the children's hospice near us, and it was AMAZING!!! I can't express how great the hospice was. Frankie went there since he was 7, so he knew the staff really well. It's like a big holiday home, with a swimming pool, computer room, light sensory room, disabled play park, play room. When we stayed there it was like an amazing holiday but you also meet other families (occassionally but not all the time) Frankie made friends with other boys with DMD and that made a difference to us. Also, as well as being an amazing holiday home for when the boys are young, it then turned into a great place to turn to, for knowledge about DMD, or for when Frankie was ill. They have nurses and a doctor and we always went there if he was ill instead of a hospital, because he knew the staff. When Frankie's DMD progressed, we felt we were the only one's who could look after him (we didn't want nurses who didn't understand his care needs). In Hope House, we were able to to as much or as little of the care as we wanted, and they supported us with that. Whenever we had a problem or were told something we were unsure of by a consultant, we'd talk it through with someone from Hope House. We felt they knew more in a lot of ways, because they've worked for years with many DMD boys.

Secondly, being the in U.K has been really useful to us, because of the NHS, we've been able to get equipment that we'd usually have to pay a lot for. Our hoists, electric bed and all our equipment were provided. We even had an adapted bungalow (but I think we were lucky with that one!). You can use the DLA and swap it for a van, which can be useful.

I guess when I feel lucky to have been in the U.K, I think I'm comparing it to poor countries really. When we were giving Frankie his meds I often thought, MD boys in poor countries wouldn't have these meds, but the condition must exist there. My heart sinks to think of that.

Anyway, it's a bit of topic but thought I'd just add a little something to the discussion.

Nice to meet you all,

Danielle, x
Sharyn Thompson said:
The other thing I have found here in the UK, having lived in both Singapore and Australia, is that they don't like to encourage physiotherapy until the boys start showing definite signs of deterioration. I recently had an assessment at the early support centre in our area and expressed my desire for James to continue having weekly physio sessions, and I was informed by the physio that it is not their practice to give physio to boys who are still young and they actually tried to steer me totally away from any physio, even if we were to go privately (which we are still going to do). Is this what has happened with everyone else?

I have also foudn that many recommend wearing night time braces from very early on, yet in both Singapore and Australia they have said it isn't necessary as long as we are giving good stretches and massages and his feet can still bend at over 90degrees. What is everyone else's experience with this?

I think the idea of a scooter is great, keeps them mobile and fast so they can keep up with otehr kids. Just don't know if James would be any good on them though due to his balance not being so good.

Lastly, I have been told to avoid stairs (or at the very least minimise them) as the action of going up (and especially) down stairs is very destructive on their muscles. The same can also be said about walking down hill. We live in a big 3-storey house and carry James up the stairs, and he scoots down the stairs on his bum. The physio here has never heard anything like that, but if you look on the boards there has been much mention about stairs.

I hate to think, in years to come, that I am not doing enough for him, so the attitude I am getting from the physio is both upsetting and confusing. We are still to get into GOSH as noone will write a referral for him - and this is the most upsetting thing of all. GPs in this country seem to be totally useless in so many ways!! I am getting so frustrated, especially as I am also pregnant, high risk, and in need of a CVS and they have been totally useless! I think I was pretty spoilt by the medical system in Signapore, even if it did cost us quite a bit.
One thing I forgot to touch base with in my previous reply was re; weight.....know with boys being on steroids it is hard to not put the lbs. on.....I feel Dr.'s do not touch base on this subject with families......extra lbs. on a already weakening body frame makes it hard to move those heavy limbs.....and it is easier for caregivers to transfer them when not so, big. Just think ( common sense here for abit ) when a ambulatory person gains alot of weight they have a time walking and moving about and the stress overweight puts on the heart and lungs.....so, just imagine what being overweight can do to a Duchenne Boy with his weak muscles that get weaker and weaker.

Cheryl

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