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Last Post |
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Wed Aug 11, 2004 10:51 pm |
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| Fri Jul 22, 2005 3:24 pm |
| Rebecca Young |
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| My daughter is just ready to start school. she was lifted by adults at her nursery and loves the freedom of being lifted and carried by us at home, we have been told that our education authority has a blanket no lifting policy, however she has bone density problems and breaks with miminal trauma, i want her to be able to choose when and how she uses the hoist (without my influence)if at all. Does anyone have experience of these issues or using a hoist (or with issues hints for a person with bone density problems and s.m.a) in general or any advice? |
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Wed Apr 28, 2004 10:04 pm |
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33 |
| Tue Jun 26, 2007 10:45 pm |
| danielle |
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| Has anyone had any experience of SMARD (Spinal Muscular Atrophy with Respiratory Distress). Our 11 week old son has just been confirmed as having this. He is breathing via CPAP and nasal canular although he is progressivly finding it more tiring on the canular. |
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Mon Apr 19, 2004 10:59 pm |
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14 |
| Fri Aug 24, 2007 7:29 am |
| lady quin |
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My son is 17 yrs old and has the upper range of SMA type II. 3 years ago he had spinal surgery and after an initial good recovery he got a chest infection, collapsed lung and spent 6 weeks in hospital. Prior to this he had never been in hopital. Since the surgery his lung function is less than half what it was before, he has developed problems with swallowing, and is having difficulty opening his mouth. He is having repeated chest infections, and is having to use a bi-pap machine to sleep with and as a cough machine. The Drs say they do not know why this has happened!!! Everything I read tells me that the opposite is supposed to happen after spinal surgery eg increased lung function and less chest infections.
I would be grateful for people's views and information on this matter. Many thanks |
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Sat Mar 6, 2004 10:33 pm |
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2 |
| Thu Mar 11, 2004 9:57 am |
| Jeanette |
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Hi i have a 3 year old son with SMA type 2. In the last six months he has been rushed to hospital with breathing difficulties and a chest infection three times. In one of these times he was rushed by ambulance to Guys hospital as they thought they were going to have to put him on a breathing machine, fortunately they didn't need to, the second time we caught it before it got too bad but the most recent, Only two days ago, he actually stopped breathing and they thought about putting him on a breathing machine again, and again they didn't need to. But it just happens so quickly, he catches a cold just a runny nose or something and then within hours it goes life threatening. Does anyone know what can i do to prevent it becoming an infection? Is there something that may trigger it off, such as central heating or dogs? Last year he had no infections at all and this year has been pretty miserable so iv been keeping him indoors more than i did last year, can that have made him worse? How long can his body cope with these infections? He seems so strong, considering what he has, when he's well and is so happy can all these infections be making him weaker will the next one just kill him? I don't know what to do to stop them or if i can do anything. The Dr who saw him in hospital yesterday suggested putting him on permanent antibiotics but that sounds so final.
Any advice will be appreciated. Thank you.
Susan |
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Sun Nov 9, 2003 12:04 pm |
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1 |
| Thu Feb 19, 2004 1:39 pm |
| Carol |
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My boy has an electric wheelchair since 2 years old. That chair is getting small and his needs are a bit different now. We are looking for a chair with possibility of standing. We have checked LIFESTAND, LIVO and PERMOBIL. It's so difficult to know what is good (most expensive is definetly PERMOBIL)We thought maybe someone has experience that they want to share whith us.
We don't have any possibilty of trying a chair in his size before we buy it, and because we want the possibility of standing we dont know if a child with weakness in his upper body as well CAN stand up in this kind of chairs.
We will be very happy for any information we can get from more experienced families. |
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Wed Nov 5, 2003 4:20 pm |
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2 |
| Sat Mar 6, 2004 10:20 pm |
| susan |
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| My son has SMA type 2, hes never had a great appetite and wanted to know if this was typical of children with sma. He can eat, chew and swallow. He still has a bottle before a sleep and sweets vanish, but we've cut these out in an effort to have him eat meals and hes existing on mouthfuls. Is he a finicky eater or is this something I should be concerned about? |
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Wed Apr 30, 2003 2:20 pm |
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3 |
| Thu Jan 29, 2004 12:31 pm |
| Sandra |
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My son Ben (weak type II) has a rear-facing car seat at the moment but at 2 years and 5 months he is getting a bit big for it! We were wondering if anyone had any recommendations for the next car seat we could get for him which would probably have to be forward facing. Because he is a weak type II his head control isn't up to much so that's our biggest worry with finding him a new seat. Any recommendations (or otherwise)?
Thanks, Sandra |
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Thu Apr 3, 2003 1:37 pm |
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6 |
| Sat Mar 12, 2005 8:23 pm |
| Jean |
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My son has SMA type 2 and i have decided to try and start toilet training him. He is nearly three years old now but hasnt shown any signs of knowing that he needs to go or letting me know when he is wet. Is his unusual? I am getting worried the perhaps his muscles aren't able to tell if he needs to go or not, is this usual with SMA?
Thank you for your time in reading this.
Susan |
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Thu Mar 6, 2003 4:23 pm |
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1 |
| Sat Apr 5, 2003 7:18 pm |
| susan |
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| I am a mother of 15 month old boy who has SMA type 2.He is due for his MMR jab & I am confused whether to go ahead with it or not.I will be grateful if any of the parent can suggest me on this .Thanking you in advance. |
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Tue Nov 19, 2002 12:53 pm |
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1 |
| Wed May 21, 2003 6:49 am |
| Vicki |
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From the mother of a 3 year old girl with SMA type 2. Does anyone have any advice on these issues?
Sleeping issues - sleeping problems, getting a good comfortable night sleep for you and your child, beds, mattresses, where to get help and advice from.
Walking aids - are they suitable/useful
How to deal with the issue of able-bodied siblings
Toiletting for girls - how this is achieved in disabled toilets that don't have changing tables |
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