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Life-limiting illness


12 replies

SevenOnwardsAndUpwards · 24/10/2013 10:07

I only just discovered this topic while browsing through the MN topics list. My 5yo DS has Duchenne Muscular Dystrophy. Does anyone else have any experience of Duchenne or any similar conditions?

OP posts:
Niklepic · 07/11/2013 17:10

Hi. My 8 year old DS has Duchenne. Was diagnosed aged 5 and been on steroids for 2 1/2 years.

marazul · 01/01/2014 09:14

Hi,my 4 year old DS has DMD,he was diagnosed 6 months ago.We are still coming to terms with the diagnose,it has been a rollacoster.

Degustibusnonestdisputandem · 01/01/2014 09:25

My 15 year old brother has DMD, though lives in Australia so no experience of the NHS.

marazul · 01/01/2014 10:01

Hi,it has been hard to get everything regarding his care in place,NHS very slow at times,but we are now under GOSH neuromuscular team too,wich gives us a bit of reassurance. apologies for grammar ,English is not my first language.

TheOnlySeven · 27/02/2014 15:19

Sorry the thread dropped off my active list, I didn't think anyone would reply, hope you're still around.

marazul how do you find GOS? We used to go there but DS had a really awful experience with one of the physios there, we go to Addenbrookes instead now which is closer to us anyway.

marazul · 18/03/2014 13:32

Hi TheOnlySeven,sorry the late reply.

I searched on mumsnet last year when my son was diagnosed,thinking I may find some other parent to talk,but it seems there are not many parents of kids with duchenne in here,which I guess is a good thing.

GOSH have been OK.Last visit was very rushed because they had some other thing going on too and we just saw the nurse,which was a bit disappointing,especially after waiting around for about 2 hours.

I hope that your DS doing well and you still around,will be nice to have someone to talk.
Feel free to pm me if you like,I don't think is lots of us in here.

TheOnlySeven · 28/03/2014 21:12

No there certainly aren't many of us here. I talk about it on MN here and there, never met anyone else until starting this thread though.

DS had an appointment on Wednesday, I requested it as he seems to tire from walking more easily lately. His assessment scores have been dropping too, 24 2 appointments ago, 22 at the next one and now down to 20. He's starting steroids next week, it now seems somehow more real though too horribly real before, I'm hoping we'll notice a difference though and the side effects won't be too awful.

Also DH is running the London marathon on 13th April for Muscular Dystrophy Campaign. He raised £6000 by doing it last year and is set to raise a similar amount this time :)

Niklepic · 29/03/2014 17:33

We saw a massive improvement after starting steroids. DS became a lot more active and jumped clear of the floor for the first time about 6 weeks after he started. Despite the stomach problems he's had I'd definitely say the benefits outweigh the risks. What regime is he starting on?

TheOnlySeven · 29/03/2014 18:02

Wow that's amazing, I always think it's odd when they ask him to jump. He's doing 10 days on 10 days off. From what I've read everyday sounds best but has a greater risk of side effects.

Can I ask what stomach problems he's having? And did he put on much weight when he started them. DS is a skinny thing and fussy too, I'm hoping if he's more hungry I might be able to use the opportunity to get him eating better.

Niklepic · 30/03/2014 17:42

Its generally problems with acid but it makes him sick. He's taking omeprazole which helps and theyve racked his dosage up so the problems are getting better. He started on daily prednisolone which did put weight on him but pretty slowly and his appetite wss enormous. He changed to deflaz about 9 months ago. The weight gain has slowed down and his appetite has decreased a little bit.

marazul · 31/03/2014 18:01

Hi,my DS started prednisolone 10 days on/10 days off after his 4th birthday.So far we hadn't noticed any side effects,apart from some days when he complain about belly ache and the change on his mood,really teary and sensitive sometimes.
TheOnlySeven I know what you mean about everything feeling more real,soon is going to be a year since my DS got diagnosed and just now I sort of manage to talk about it and explain what Duchenne is,without turning myself into a sobbing mess(some days anyway). Is on our minds all the time.The constant battle within myself to keep a smile on my face,to be able to cope with every day life and give them my very best,when inside I'm hurting so bad.
On the days Im feeling a bit stronger I try and deal with all the practical stuff that comes with his diagnose,education,appointments,fundraising and on the days Im not so strong I have learned to allow myself to take a rest and cry as a way of gathering some strength,but It hurts beyond words,every dr letter,reports,appointments,every time he loses his balance and falls,is a reminder of it.

Niklepic is brilliant that your DS can jump clear of the floor,mine just manage a sort of skip with his legs when they ask him to jump.

Well done your DH TheOnlySeven and hope everything goes well on your DS appointment.

marazul · 31/03/2014 18:05

Sorry just realised your DS had an appointment,not have.
Hope he does well on steroids and don't get side effects.

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