stephen
  • Male
  • liverpool
  • United Kingdom
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Name(s) of child(ren)/individual(s) with Duchenne:
alex
Age(s) of child(ren)/individual(s) with Duchenne:
19 or older
City:
liverpool

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Comment Wall (10 comments)

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At 7:05am on September 26, 2011, lisa burke said…
Thanks Stephen. though typically i'd just ordered from kirkman before i picked up your message!
At 3:27pm on January 23, 2009, Lorraine Davies said…
Hi Jenny, know what you mean about the extra help at school, that's how Alex used to get up until it got too hard for him.It really used to upset me knowing that he was struggling when an adult could easily pick him up. Alex overheard teachers discussing how it would heart their backs if they had to get him up. We were straight into school and in touch with the OT, the school bought a lifting belt. If he fell it could be put on around the trunk of his body and 2 people could lift him with the handles onto a chair. Alex's first helper was really good with him, if he fell she would just pick him up. It does help when you know they've got extra support, knowing just things like somebody is with them when they need the toilet or carrying things.Does Alex take steroids? Alex is upset today his guinea pig died. Lorraine x
At 4:24pm on January 22, 2009, Lorraine Davies said…
Hi Stephen, the chair Alex used was already at school it had been used by a little girl who had CP , the ot checked it was ok for Alex and he was able to get up from it. If you have an OT or physio ask them to go to all meetings with you they explain to education what Alex will need, not just now but in the future too. It takes ages for the statement to be put in place. We then had yearly reviews to see if any changes were needed.Does Alex need learning support? Our Alex does. Now at high school he needs supoort getting about and going to the toilet , but she leaves him at lunch time to be with mates, if he needs her he goes to the medical room. Your lucky moving to a bungalow , we had to have our house adapted (extension) what a fight that was. It took ages to sort out and the cost of building was well over the £25,000 grant. Although we both work there was no way we could meet the cost.At one point they wanted us to add it to our mortgage, but that would of left us with no money to do anything. Our OT put our case forward to the council and they met the cost. She was brilliant . Its been built about a year now , his bedrooms downstairs which was hard at first, but he didn't start sleeping in there straight away.We used it as an extra room until we got his special bed. Hope your meeting went well.
At 4:20pm on January 18, 2009, Lorraine Davies said…
Hi Stephen, Alex's primary school had no experience of a child with dmd but they were good meeting his needs. When Alex was diagnosed Sarah Savage from muscular dystrophy campaign went in to explain about the condition to all teachers.As Alex's needs changed they listened to what we said he needed. The OT also made regular visits to check on him. School was on one level no steps and had a disabled toilet, the other toilets were to low for Alex to use. Chairs got too low also so he had a special chair. His one to one there was great and supported him well.It was only really towards the end of year 5 when he started to use his manual chair for safety, he was frightened of being knocked over in the playground or in the corridors.We live on a close were the children all play out, in front of the house is a big grassed area were all the lads play football which was hard because he couldn't join in. My mum got him a scooter (like the ones old people have) he thought it was brilliant. He could be out driving round and round and my mum only lives round the corner so he could do that by himself to. We could all go out together on our bikes to along the wirral way.
At 6:33pm on January 16, 2009, Lorraine Davies said…
Hi Stephen, Alex is in mainstream high school with full support.He had support at primary for 17.5 hours which was fine, when he was moving to high school they still only wanted to give him the same hours so we had to appeal against this saying why he needed full time care.The statement had to be ammended. Alex also has moderate learning difficulties so he is in small classes.His carer was already at the high school she was with another boy with dmd who has now gone on to university in Liverpool. Is the school good that your Alex goes to? How long is it since he was diagnosed?
At 4:08pm on January 15, 2009, Lorraine Davies said…
Hi Stephen, have heard about supplements protandim and co-enzyme q10, when we last saw spinty (sep 08) we asked about giving Alex supplements and he said as long as diet was healthy he didn't see the need for them. Co-enzyme q10 helps the heart so we might consider them. We were supoosed to see spinty in December but we were on holiday, rang his secretary to tell her and still waiting for another appointment. After the September appointment he was supposed to organise blood tests and scan for bone density still not had them either! Nice man but you do have to chase him all the time which we shouldn't have to.He was good when we needed him to write letters for school and he has just written a supporting letter for motability as we are trying to get an adapted vehicle because Alex uses a powered chair for high school. He has to go in a taxi at the moment.
At 4:34pm on January 13, 2009, Lorraine Davies said…
Hi Stephen, Alex has regular physio at Clatterbridge hospital in the hydrotherapy pool with two other boys who have dmd, he also uses the pool at Claire House. We were a bit daunted at the thought of visiting the hospice at first but fine now. He has even stayed a couple of times and made lots of friends. We couldn't believe how many boys there are over here with dmd. We've not really followed any diet just let him eat what he likes. He was on prednisolone 10 day on 10 days off and his weight was fine.His steroids were changed June 07 to Deflazacort daily and he has had a little weight gain and his face is rounder. Has Dr Spinty mentioned Claire House to you? His wife works there. Ethan is also into WWE, he went to the Echo Arena with his friend to watch it. We just have to watch him when he tries to do moves on Alex.Although Alex has hit him on the head a few times with his ps3 remote. Boys eh! Lorraine
At 10:34am on January 13, 2009, Lorraine Davies said…
Hi Stephen just read that you are from Liverpool we are from Wirral (Neston) over the water. Our son is called Alex also ,he is 12 doing well ,still walking. We visit Alder Hey to see Dr Spinty. Lovely photos, we've just visited Mickey in Florida November 08. Our other son Ethan is 8, Liverpool mad but we haven't met the players.Did you write to the club? Its nice to speak to somebody in our area! Take care, Lorraine.
At 8:03am on September 22, 2008, Tina said…
My son weighs 65 lbs yet he is taking 18mg of deflazacort daily this equates to 12.5mg of prednisone daily ( a dose for a 40 lb kid). His neurologist said about now he would think about increasing his dose due to his weight increase but because his strength is stable ( i.e., not falling, or struggling more) he will keep him on this dose.
Where I buy it and how I came about his dose are on the idebenone thread. This was the same dose used in the study involving Freidach ataxia children. I would check with your son's physician or neurologist first. I checked with our son's neurologist before starting this supplement. He was okay with starting this but wanted to look into the dose, first. He still hasn't gotten back to me about this. I looked into the dose, myself. It's legal to buy. I buy it from a company in California ( on the thread).

Your son is quite an adorable kid. Have you signed up on Robin Sharp's Trialserve forum? He lives in the UK and has a 8 year old with DMD. Lots of good information from this forum. Does your son take protandim, another supplement? Go to this link ( (Trialserve forum link) and click onto Announcements- you can read about a parent observational study done using this supplement. Here's the link: http://forum.trialserve.com/forum/listthreads?forum=4

Tina
At 5:49pm on September 19, 2008, Tina said…
I meant to add also that I really didn't expect to see any strength increase from the idebenone, but am hoping what is happening inside his body ( heart muscle preservation) is working from idebenone.
Cheers!
 
 
 

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