Families from the U.K (United Kingdom)


Families from the U.K (United Kingdom)

A group for families from the U.K to chat about their families.

Location: united kingdom
Members: 46
Latest Activity: Mar 23, 2016


GOSH and steroids

Started by lisa burke. Last reply by lisa burke Oct 31, 2011. 2 Replies

Please watch and pass on - my poem to my son.

Started by Sharyn Thompson. Last reply by Christine Davies Oct 28, 2011. 2 Replies

wheelchair swings

Started by claire holloway. Last reply by anne Mar 1, 2009. 3 Replies

Comment Wall


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Comment by Johanna on January 6, 2009 at 4:48pm
Hi all
Thought I would join on here as well as the other forums, although I am getting quite confused with all the passwords !!!!!!
If you don't know me from the other sites, I am Johanna a single parent to Archie who will be 6 next week and he was diagnosed Sept 2005, as like Annette we are undergoing assessments as Archie has scored high under the headings of brain hyperactivity and impulsiveness under the ADHD guidelines and also showing traits of Aspergers.
I live in Putney London and Archie is under GOSH. Finding Archie's upcoming birthday pretty hard, feelings of another year passed but of course still trying to be positive for the years ahead and all the great research going on.
Speak to you all soon xx
Comment by Sharyn Thompson on January 4, 2009 at 3:21pm
Looks like we're getting a fair group on here now, and I have noticed many more UK people joining PPMD. That's great!
Comment by Emma Jerred on January 2, 2009 at 6:37am
Hi guys. Also know a few of you from other Forums, but hello to everyone and look forward to getting to know you all a little better.

I'm Emma, mum to Amy (6) and Sam (4). Sam was diagnosed in March 2008 with DMD. Taking me ages to get my head round it all, but getting there (I think). Spending lots of my time trying to find out all that I can to help my boy. Recently found out that I'm a carrier so that's taking a while to get to grips with too.

Struggling at the mo with trying to get things ready for when Sam starts school in September. Ed Psychologist saying that he does not need Statement, physio thinks he does, as do we.....aarrgghhh everything seems to be a struggle! Back to GOSH this month to see how he is getting on.

Sharyn-I'm a paranoid mum with a capital P!!! And I too have learnt not to care what other people think!!!

Really great that we have got this group here :o)) Thanks Danielle. Happy New Year to you all.
Comment by Sharyn Thompson on January 2, 2009 at 4:14am
Thanks Anne, we have an appointment with the community paediatrician next week. I am going to ask her to help me. We're trying to get James statemented at the moment, plus he starts school next week, so there is a lot happening here at the moment in his (and our) world. It's all very nerve-wracking, this going to school stuff! I am sure, like all other mums who have had to send their boys to school, that I am going to worry about how I am going to protect my son at school when the teachers have no real idea what to expect or how to deal with it. Even I don't know what to expect. That said, his school principal has done a lot of research and given a lot of info to his teachers - I really hope he's okay! There I go again, being a paranoid mum! I am sure everyone around me thinks I'm a paranoid mum when I take him out playing, but I have now learnt not to care what anyone else thinks. Is everyone else the same?
Comment by anne on January 1, 2009 at 4:12pm
hi everyone... thought i'd 'pop in' too
i'm a mum of 4... my youngest has dmd, he's 10
i already know a few here and looking forward to meeting new people... as well as having a look around and learning..
it's just nice to know you're not alone sometimes

sharyn... we go to GOSH, our referral was through our local paedatrician at the child development centre.
Comment by Danielle on December 30, 2008 at 3:59pm
Hi Annette, thanks for joining the group. You should meet MommaToo, she's lovely and have a look at her story here: http://community.parentprojectmd.org/profiles/blogs/when-brandon-entered-my-life

Great news that your pregnant again! It's good that you can find out what sex it is in advance. I'm sure you'll have your hands full with two children what with football parties and all!
Comment by *annette* on December 30, 2008 at 7:18am

Saw your message on AD and thought I'd join you over here :-)

My little boy Joe has DMD..diagnosed May 07. He's doing great physically but he's currently being assessed for ASD/ADHD. He gets very stressed and explosive but then is the sweetest most beautiful child ever! Its so sad :-( It breaks our heart.

I am also pregnant and we have found out we're having a girl so less chance of anything occuring. I'm due May 14th...2 days before Joe's b'day! yikes! lol he's adamant he's still having his football party tho lol.

Looking forward to making new friends here :-)

Annette xx
Comment by Sharyn Thompson on December 30, 2008 at 3:07am
Hi Dannielle,

We have recently moved here from SIngapore, though we are actually Australian. My children have never lived in Australia - James was born in Tokyo, Japan, and my two girls were born in Singapore. I am now pregnant with my 4th child so he/she will be born here!

We are currently trying to get James into Great Ormond Street, though have found we come up against barriers when getting our stupid GP to write us a letter of referral. He actually asked what James's prognosis was and was his DMD progressive?????? He also told me that Deflazacort is not available in this country, but that there are many other steroids that will do the same as Deflazacort or Prednisone. Aaaarrrggghhhhhh!!!!!

Anyway, I will persist and will most likely go private so I can get my initial appointment at GOSH.

Thanks for setting up this group - I only know of one other girl here with a DMD son (and she also happens to be Australian) and I see she has already joined. Hi Kelly! It will be nice to talk with other UK families and find out how they get things done and jump over certain NHS barriers.

Comment by Danielle on December 29, 2008 at 7:16pm
hello, welcome! This is a new group for families in the U.K. This website seemed to have loads of people from the U.S (who are all super lovely, but who face slightly different chellenges, and the U.K website doesn't allow personal profiles and pictures) so I thought I'd set up a group for us people from the U.K. You can start a discussion about anything, join in the main discussion forums, or simply find other people from the U.K to chat to. You can also post tips, great places to go, good equipment you've found, anything really. Look forward to meeting you all! Love Danielle

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