Bombshell

pimento

MyRubyRed wrote: »

... treatment is improving all the time. Be strong xx

This is very true. He's young and medical advances are moving at a huge rate.

minimoneysaver

It may be worth finding out about worldwide clinical trials. Some of them are fantastic and you get great treatment and a whole team of consultants etc. My heart goes out to you and your family.

SUESMITH_2

emmaBZ wrote: »

hi sorry for your news, my sister has muscular dystrophy and is now 25 ( i know it affects boys and girls differently ) shes brilliant a fully qualified hairdresser, own house ect, when she was little the physio wanted to put her in a wheelchair aged around 8 she flatly refused ! and still manages to get about ok i think if she had gone in the chair she would not be able to walk at all now as she would have no strength left in her legs atall...obviously do whatevers best for your son, but i firmly believe that as my sister kept on walking about ( despite falling over quite a lot ) it helped her to strengthen the muscles in her legs more....

my thoughts are with you xx

duchenne (dmd) is different and a much more severe form im afraid, its a genetic disease that only expresses in boys but girls can be carriers.

stay strong! xxx

ellay864

Can't offer any help other than to echo the suggestion to ask your consultant about the possibility of getting onto a trial. And remember that trials ongoing now may offer help for your son in the years to come
I can't imagine what this must be like for you and my heart goes out to you and your family xx

niklepic

Thanks everyone. I've decided I'm not going to be sad. I'm going to be as positive as I can be and not think about what is going to happen a few years down the line until i have to!! I've already found one positive - It's my perfect chance to give up work (or at least go part time until his condition worsens)! Luckily both my and dh's family live pretty locally so we have a good support network around us but unfortunately dh's dad is in the last stages of liver cancer so its a bit of a double blow for everyone.

Am going to ask consultant re clinical trials. DS will be going on steroids shortly which will hopefully keep him on his feet longer !! He's currently rolling around on the floor laughing at Tom and Jerry.

adjests

DMD is such a cruel illness. My heart goes out to you and your family.
Have a look at http://www.muscular-dystrophy.org/. A friend whose son has DMD received really good support and guidance from them.

Glad

Hi niklepic
so sorry to hear your sad news it's good that you are trying to be positive and are able to adjust work to spend time with your little boy
the link in the post above looks really helpful and I'm sure there will be more help posted on this thread

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milliebear00001

Sorry to hear your shocking news. Things must seem terribly dark at the moment.

I am a primary school teacher, and last year, had a little boy with Duchenne in my class. He is now 11, not in a wheelchair and still very able physically. He was (and still is) extremely popular with his peers and struggled only a little with some things (such as PE where balance/strength could be an issue at times). He received one to one help in school, but could easily have done without this much of the time. He will go to the local secondary next year, where they have adaptations for wheelchairs when he should need them.

Duchenne affects children differently. The child I taught was part of a national research programme and was receiving drug therapy. Perhaps this is something you could investigate in time?

Do you have other children? The child I taught had an older brother and younger sister. His brother was not affected, although I don't know if his sister is a carrier.

From a learning point of view, some children with Duchenne appear to have an increased likelihood of difficulties such as dyslexia. The child I taught did and was part of a learning programme run by the MD Society to help with this. It's worth keeping an eye on his learning progression in case this is an issue for your son.

Good luck. I too would really recommend approaching some of the support groups and charities dedicated to families where somebody is affected by this condition.

niklepic

Hi Millie. Thanks for your reply. I've just been referred for genetic counselling to see if I'm a carrier. I do have DD who's 12 but i don't think she can be tested for carrier status until she's older. I've joined so many foundations the last few days I'm feelin slightly overwhelmed. DS does have learning difficulties and functions at around a three year old level. He is starting to learn his letters and numbers but nowhere near reading yet. The lady who's coming on Friday is also going to go into his school to see what help he can get there. I think the next step is a SEN.

helphelphelphelp

Hi there

So sorry to hear of your son's diagnosis. I found a website SpecialKidsUk really supportive. It is specifically for parents of children with disabilities and medical conditions and I found everyone gave me great emotional and practical support as they are all going through exactly the same issues you are so will understand you completely. You will probably be able to speak to other parents whose children share the same condition which may be of help to you. x