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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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 learning 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.
There are differences between Australia and the UK that I have noticed, and here in the UK there is a definite postcode lottery as to local care.

In Queensland, all children with a Nueromuscula disorder are referred to Montrose Access which is headed up by Helen Posselt. When Aidan was diagnosed in May 07, he was referred straight away. We were told he would use a seated scooter before before he used an electric chair. I think most of the Qld boys use them, rather than manual wheelchairs. Here in the UK, they are given manual wheelchairs.

When we told them we would come to the UK to be close to my husband's family (my family is spread out all over Australia...my parents were 1700km away!) Helen Posselt told us no stairs. Not many 'bungalows' about, and so Aidan comes down on his bottom. We try desperately to limit the stair use, but do let him go up and down (on his bottom) because here in the UK, Michelle Eagle - Physio at Newcastle University - said it would be a case of use it or lose it, and careful use was ok, and so we have found a happy medium.

Aidan needed serial casting for 3 weeks when he was diagnosed to get his feet to 90 degrees, and then was cast for night splints, provided by Montrose Access. Again, I think all boys in Qld wear them pretty much from diagnosis, but you may need to check. We were also given an incline board for more stretching, and stetching positions for when Aidan was reading on the floor. Aidan was also doing weekly Hydrotherapy through Montrose on the Gold Coast.

Here in the UK, our local physio said don't bother with the extra stretches and refused Aidan access to hydrotherapy saying he wasn't applicable as hydro is for rehabilitative purposes only. I argued that this was for maintaining muscle function etc, and it is considered best practice as a therapy for dmd etc, all on deaf ears. 18 months later, he still doesn't receive hydrotherapy. I also asked for orthotic insoles for his feet, they are deformed slightly, and she initially resisted saying he was going to end up in a chair anyway! I fought, and won, and told GOSH and they were apalled.

In the end we moved!

GOSH is great, but on a local level the care Aidan receivs compared to that he received under Montrose Access in Queensland is far below par. Montrose Access understand DMD completely, Montrose Physios only care for kids with Nueromuscular disorders and I think there are roughly 100 dmd boys throughout Queensland under their care...they know their stuff on all levels, inside and out. Here I seem to be educating the 'professionals', although our new physio is far better!

We are beginning to think we have made a mistake moving here and are seriously considering returning some time this year...my parents are willing to move to SE Queensland to be close to us.

Mind you, again it is a local issue, I'm sure it's probably much better in other parts of the UK, but we have come from somewhere that was fantastic!
Hi all

It still appalls me on the difference of care our boys are receiving here in the UK. I am very, very fortunate as I feel that I receive better care from my local team than I do from GOSH, although this is improving since my community pead wrote to Dr Manzur saying that she fully supported me when I discussed taking Archie to Newcastle twice a year.

Archie was diagnosed at 2 and a half and from day one he has had a dedicated senior physio, who started a programme of stretches immediately. Hydro is a battle to lack of rescources but my local pool has a very warm teaching pool and Archie's physio met with us there and took me through a programme of exercises, swimming is also free locally for a disabled child and their carer. Archie was also given a named O/T and speech therapist.

Archie has had night splints since Feb 2006 and gaitors since March 2007, I realise that the fact that my GP has been my family doctor "forever" has really helped in fact they can be over cautious at times. In terms of housing, blue badge etc... this has all been put in place because of the support locally.

I too have been told that stairs are detrimental, alot of local physios haven't come across DMD before and I know that Archie's is in regular contact with Marian at GOSH for the most up to date information.

Our local care is undertaken by Queen Mary's Roehampton under the direction of Dr. Jo Cockerham Pead Neurodisabilty Consultant at St.George's and my PCT is Wandsworth/Merton.

I really believe this should be at the forefront of Action Duchenne's work because centres of excellence should be made available but these will take time and in the meantime boys, depending on where they live, are suffering.

It really infuriates me that on top of diagnosis, dealing with emotions, being parents we still have to fight. Sharyn I hope you get the referral to GOSH soon, it may be worth going directly to them if you have no luck xx

Kelly Richardson said:
There are differences between Australia and the UK that I have noticed, and here in the UK there is a definite postcode lottery as to local care.

In Queensland, all children with a Nueromuscula disorder are referred to Montrose Access which is headed up by Helen Posselt. When Aidan was diagnosed in May 07, he was referred straight away. We were told he would use a seated scooter before before he used an electric chair. I think most of the Qld boys use them, rather than manual wheelchairs. Here in the UK, they are given manual wheelchairs.

When we told them we would come to the UK to be close to my husband's family (my family is spread out all over Australia...my parents were 1700km away!) Helen Posselt told us no stairs. Not many 'bungalows' about, and so Aidan comes down on his bottom. We try desperately to limit the stair use, but do let him go up and down (on his bottom) because here in the UK, Michelle Eagle - Physio at Newcastle University - said it would be a case of use it or lose it, and careful use was ok, and so we have found a happy medium.

Aidan needed serial casting for 3 weeks when he was diagnosed to get his feet to 90 degrees, and then was cast for night splints, provided by Montrose Access. Again, I think all boys in Qld wear them pretty much from diagnosis, but you may need to check. We were also given an incline board for more stretching, and stetching positions for when Aidan was reading on the floor. Aidan was also doing weekly Hydrotherapy through Montrose on the Gold Coast.

Here in the UK, our local physio said don't bother with the extra stretches and refused Aidan access to hydrotherapy saying he wasn't applicable as hydro is for rehabilitative purposes only. I argued that this was for maintaining muscle function etc, and it is considered best practice as a therapy for dmd etc, all on deaf ears. 18 months later, he still doesn't receive hydrotherapy. I also asked for orthotic insoles for his feet, they are deformed slightly, and she initially resisted saying he was going to end up in a chair anyway! I fought, and won, and told GOSH and they were apalled.

In the end we moved!

GOSH is great, but on a local level the care Aidan receivs compared to that he received under Montrose Access in Queensland is far below par. Montrose Access understand DMD completely, Montrose Physios only care for kids with Nueromuscular disorders and I think there are roughly 100 dmd boys throughout Queensland under their care...they know their stuff on all levels, inside and out. Here I seem to be educating the 'professionals', although our new physio is far better!

We are beginning to think we have made a mistake moving here and are seriously considering returning some time this year...my parents are willing to move to SE Queensland to be close to us.

Mind you, again it is a local issue, I'm sure it's probably much better in other parts of the UK, but we have come from somewhere that was fantastic!
Like Kelly, we have decided to make our stay here brief. We came here with my husband on a two year contract, with the whole idea of making it 3-4 years, only to now decide that we will most likely do our two years and then go back "home" - whereever that may be! None of the kids have ever lived in Australia, so it must be weird when we keep talking to them about Australia and calling it home. Our other option is to return to Singapore, especially since all expats have live-in help (we brought ours from Singapore) and the live-in help makes things so much easier. This is even more so when we have to take james to Physio or doctors appointments, etc and can leave the other 2 (soon to be 3) kids with our helper. We also have the disadvantage of having neither family nor friends nearby to call on if we ever need them. I am feeling pretty isolated here and never realised I would feel this way until I got here. After all, we had done Singapore and Japan without family, but this time it's different. In both those countries, the expat community (who were all in the same orphan boat) became our family and in fact they have become better friends than all those old friends back home.

But enough of the ramble. We are currently in the process of applying for different benefits ie Blue Badge, child benefits, and Disability Living Allowance. These things would have been available to us in Australia, I could well imagine. I don't know if US has the same social service and benefits support that is available here and in Oz. I do know that parents with DMD boys get a free trip with their sons to Cincinatti (or any of the other centres), but as for benefits and disabled parking at such a young age? I'm not so sure.

We are currently in the process of having James statemented, and that has included meetings with many specialists. We have him enrolled in a local school (the only school not fully subscribed in the area and the only one that had a vacancy). At first I thought the school was fine, but I went yesterday with James for ameeting and now I have changed my mind (I don't like his head mistress or class teacher). I am not putting my son in that school and have decided to home school. Besides, he is only 4.5 and he wouldn't be going into real school till he is 5.5 in Australia. They want him to go into Year 1 just after he turns 5, but he would be 6.5 in australia. So I am keeping him out of school and homeschooling. I found a site yesterday that will send the entire curriculum and syllabus to me. So that's where we are at for school.

We have an appointment with the community paediatrician on friday, so I am hoping for a direct referral to GOSH from her. I don't know, they all seem to be so blah about everything, like it can be done next week and not today! We have such a limited time with our boys that I want everything done yesterday, and I want physio and I want OT and I want hydrotherapy (as the local pool is so cold!) I feel like I'm banging my head on a brick wall and not getting anywhere. The same could be said about my prenatal care - I have been given no guidance at all on that and don't know where to begin, especially since I need to have a cvs in a few weeks, but that is a different matter.

I've raved on long enough. I love that NHS covers so many things, but I wish they would make it easier and not put up so many barriers. We have private health insurance, with no restrictions on pre-existing conditions (though not maternity care) and I am wondering if I can make use of that instead.

Oh, and how do I make an appointment directly to GOSH? Maybe if I get in there privately, they can help me overcome all the NHS barriers.

And Kelly, I know you're from Cairns (and Deb Robbins says hi) - we are thinking of moving back to the Gold Coast (we are from Sydney's northern beaches) as it is warmer weatehr and James can swim for most of the year. I love Queensland!
Sharyn...I am really surprised you dont yet have a community paediatrician. Insist your GP gets you one asap!! They will then refer you to GOSH.

We started at Southampton general and were mortified. They lost appointment times, letters and even told us to sit in the wrong waiting room on 2 occasions. Getting joe's biopsy results took 9 weeks and for them to give them to Action Duchenne for the registry has taken 18months! its a joke. "Joe has DMD, have a good life, here's some in for on Steroids"...gee thanks Mr consultant! cue us looking it up on google and breaking down! Not good!

Our community paediatrician referred us to GOSH and we have been happy there but they havent been much help with emotional/behavioural issues. That I am having to deal with myself and we are waiting for an ASD/ADHD assessment.

Local physio and OT is not that good and like many of you I feel like I'm teaching them. They are fighting me at the mo for a sloping desk for Joe. It helps take the pressure off their shoulders for writing and keeps them in a much better posture but because he looks like he doesnt need it yet theya re saying no! FFS!!! He has a hard time writing and it would probably help him! jees!!!

We are being temp. housed by our towns housing association but its a 3 story house too and JOe is up and down like a zip! He wont come down on his bum often as we dont have carpets and he has been caught on a few sticky outie nails on the stairs before now, but I am freaking out. The Housing Associatiopn wont stick a chair lift or bath lift in as we're temporary!!!!! They are coming out next week with housing from the council to discuss things further. I know they need to find us something that we will ultimately stay in but I am so worried about the stairs and the fact we are on a different sleeping level to Joe is hitting him hard, he really cant cope with us on a different level...plus with a baby on the way we need another room ...at this rate she'll be sleeping in a drawer in our room as there is no room for a cot up there!

Oh and dont get me started about school!!!!

KElly and Sharyn...I wouldnt blame you for leaving and going elsewhere...I might just join u!
Girls,

I feel so much better just knowing that I am not the only one who is frustrated. Coming from different systems (and more efficient at that) it is very hard getting used to this one. Our GP is useless, as I have stated on more than one occasion. He actually asked "what kind of Duchenne" does James have!!!!!!!! He then asked if it's progressive!!!!!!!! Duh, yeah!! He then informed me that many duchenne suffers don't show symptoms till they're adults, and I kindly (well maybe not so nicely) informed him that that was Beckers MD. He then asked me "who's the doctor here?" and I (not so kindly) informed him that he was but a simple suburban GP who knew how to treat runny noses and infectious diseases, and perhaps the odd wart or ingrown toenail, but that he knew nothing about DMD. I told him that I have lived and breathed this disease since James was diagnosed at 1pm on September 1st 2006, and have read all there is to read and talked to many doctors and posted on many forums asking for even MORE info. He then asked what medication James is on and I told him Deflazacort. He then informed me that Deflazacort is not available in this country (obviously because HE'S the doctor and an expert!!) and that there are many other steroids(apart from Prednisone and Deflazacort) that will do the same trick!!! Are you kidding me???? And this is James's designated GP? I then asked him for a referral to GOSH and he told me that was not necessary as he just has to go to the local hospital. I informed him that GOSH is the centre of research and trials in this country (along with Newcastle) and he told me I had to give him the exact name, title and department of the person I wanted to be referred to. Well, what do you know, I had it right there and gave it to him. When I rang up a week ago to follow up on the referral, his secretary informed me he will not do a referral as James is only entitled to treatment at the local hospital. Aaaarrrggggghhhhhhhh!!!!!
Your GP is a moron! I hate that you just can't go to a GP of your choice over here...it keeps the bad ones in business.

Just trying to think what you can do...maybe ring Nick Catlin, see if he will write a quick letter to your GP, as the CEO of Action Duchenne, the only dedicated DMD charity in the UK, stating that until more convenient centres of excellence are established it is imperative that James is referred to GOSH and is under their care along with the vast majority of dmd patients in Southern England.

When we first arrived I rang Nick explaining we had just arrived. He told me I needed to get Aidan referred to Muntoni et al, and that's what I told the GP as I handed him the contact info. I also told him that Muntoni and team are amongst the lead researchers world wide in potential dmd treatments and patient care, etc. That did the trick. Your GP is being very unprofessional.
Oh, btw, we ended up moving as I told hubby I felt like I was going to go mad! We had 2 hydro pools in our area, one 200 yards as the crow flies...an NHS one brand spanking new and opened in 2008 for children with learning difficulties...Aidan, having a mucle wasting condition, was not applicable. It still makes my blood boil!

Gold Coast or North Brisbane...not sure yet! I adore the Gold Coast! Either way, we'd still be about the same distance in driving time as we are now!!

We have found GOSH to be a god send due to the local care, but Aidan is only affected by dmd physically, he doesn't have any associated developmental delays etc, and so have not experienced that facet of their care. Plus, I keep nagging GOSH for certain treatment ( a whole other topic), but I'm almost there with them!!
Glad you seem to winning your battle with Aidans other meds! Its about time too!

xx

Kelly Richardson said:
Oh, btw, we ended up moving as I told hubby I felt like I was going to go mad! We had 2 hydro pools in our area, one 200 yards as the crow flies...an NHS one brand spanking new and opened in 2008 for children with learning difficulties...Aidan, having a mucle wasting condition, was not applicable. It still makes my blood boil!

Gold Coast or North Brisbane...not sure yet! I adore the Gold Coast! Either way, we'd still be about the same distance in driving time as we are now!!

We have found GOSH to be a god send due to the local care, but Aidan is only affected by dmd physically, he doesn't have any associated developmental delays etc, and so have not experienced that facet of their care. Plus, I keep nagging GOSH for certain treatment ( a whole other topic), but I'm almost there with them!!
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
duchenne is a very frustrating condition... it totally sucks; and when we don't get the best from the system... that sucks too
but i do think we are lucky in the uk to have a free health system... we don't have to pay to see our gp/consultant, orthotics, medication, physio, ot etc... or hopefully have insurance to cover all eventualities... but, no it's not perfect
the post code lottery is crazy; we should all recieve the same level of care... without the fight and anxiety
all the doctors should be recommending use of physio, splints, steroids etc with the same 'timings' as recommended by specialists and research... then we could all be confident that our children are getting the best

i had thought that you have a choice with gp, although they like you to be local (we have never seen our gp in relation to dmd) and i also thought you had a right to be refered to a specialist centre; but maybe i take the system for granted...

the internet particularily has made us all aware of what we could/should be getting... we 'just' have to get that gold standard care!
currently both the muscular dystrophy campaign and action duchenne are campaigning for equal care throughout the country... hopefully working together!

it must be harder when you have other options, a foot in both camps so to speak... the choice to go to another country... my only option when my back's against the wall is to come out fighting... and i have to choose my battles, there's only so much of me to go round!!
i think the early years of diagnosis are hard, everything needs to be put in place... education, health.... but things do settle down; the time between the battles become greater
my son has been diagnosed 5 years now, and there are times that i still want to scream... but not as often (i hope i'm not resigned to a lesser standard of care!)

if/when you do move.. think about school as well as health provisions.. i don't know how disabled kids are accommodated in school around the world.. but it is a big dissision, particularily secondary shool. and of course your other children have to be considered

sharyn; home schooling, i admire your determination and wish you luck. i have seen groups of home schoolers, where they get together to pool resourses, there's one local to me, maybe one near you

wishing us all luck in 'the battle for the boys' !!

ps. i think queensland is great, we have family in north brisbane too.... a warm pool (with a pool hoist) fantastic!! big open plan bungalows, even better!!
Hi all
Just on the point of GP's, you can choose but you have to be in the surgery's catchment area. The only problem you might find is that if you have one great surgery and loads of rubbish ones you may have to wait longer for appoinments etc... My GP was great because when I last moved we were in fact one street away from their boundry, because they have known me for years and my GP was genuinely concerned regarding Archie's care, they kept me on and applied to have their boundry extended by one street.
It really is worth moving GPs as they are paid depending on number of patients and it sounds like you have a complete idiot at the moment (to say the least!!!!)

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