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Last Post |
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Tue Apr 19, 2005 6:30 pm |
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2 |
| Fri Jun 24, 2005 5:50 pm |
| tracy hughes |
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| Hello!My son have SMA2 and we have a lot of respiratory problems include a collaps of right side of lungs.So I will be realy happy if someone with same problems contact me and give me some information about any treatmans or terapy.Does someon have experions with traheostomy.Doctors told us to think about this solution,but is this realy a solution for my son.It is realy hard to take a desition for own kid becaose I wont him all the best in life.Pleas help me with your experiens.Sorry for my langruidge,I am from Slovenija and new in this. |
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Fri Apr 1, 2005 7:42 pm |
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6 |
| Fri Sep 2, 2005 11:41 pm |
| Aisha |
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I have a 21month old daughter called Sian with SMA type 2. She has a potty chair at home and has picked up really quickly on asking too uses the potty. My question is what do i do with her when she wants to go to toliet at family/friends house or when we are out what do i do in a public toliet? Obviously as she gets bigger this is going to become a even bigger problem and i do not want her to be in nappies.
Can any one advise me? |
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Sun Mar 20, 2005 10:12 am |
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1 |
| Fri Sep 2, 2005 11:55 pm |
| Aisha |
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| my son jake age 13 type 1/2 has just been told he is not a suitable candidate for spinal surgery.This is because his curve is too severe and he has been referred too late (surprise surprise)Bristol has suggested he is taken out of his present seating system (foam carve)lose the spinal brace as all its causing is pressure sores and gastrostimy irritation and be possible put more reclined in a matrix system.Our local DSC seem to prefer the way he is at the moment so im confused as to whos right and whose wrong.Has anybody else got any experience with supportive seating at this age bearing im mind his spine is struggling to hold him upright due to growth spurts.I live in Devon and the powers that be are learning mainly about sma from us so support is rather thin on the ground.Any help/previous experience with this problem much appreciated |
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Sun Mar 13, 2005 1:39 pm |
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1 |
| Sun Apr 17, 2005 9:09 pm |
| diana |
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| Who can give me some information about his/her experinces with an in-exsufflator cough mashine with little Children younger than 1 year ? |
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Wed Feb 9, 2005 9:42 pm |
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7 |
| Sun May 14, 2006 9:38 am |
| lilias |
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When we were last at Hammersmith with our son, who has SMA II, they had a great swimming aid - it was a vest with a bouyancy aid to prevent the childs face going into the water - it kept the child vertical. Does anyone know where I can get one or of anything similar or better that is suitable for a child of 3.
Thanks |
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Sun Dec 12, 2004 8:46 pm |
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2 |
| Wed Nov 2, 2005 10:59 pm |
| Marian |
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| Physiotherapy appears to be very important activity for children with SMA, our grand daugher age 12 months has been diagnosed SMA type 1/2 and she recieves daily physiotherapy plus her mother repeats for a few hours the same exercise. Question is this too much or good? also if it is good would the Peto Institute in Budapest be a good idea has anyone with SMA tried the Peto Institute. |
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Sat Oct 30, 2004 9:15 pm |
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4 |
| Fri May 20, 2005 8:19 pm |
| Fish |
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| Our 5 month old daughter has Type I SMA, but is still fairly healthy at present. We would like to take her swimming - as part of her physio - but also as something we can do as a family with her 2 year old brother. Can anyone advise if this is safe, or would we be increasing the risk of chest infections etc. |
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Thu Oct 14, 2004 9:31 pm |
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4 |
| Fri Sep 30, 2005 2:07 pm |
| Michaela |
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| Hi I am a Nursing student in Yr 1 and I am about to start working with a two yr old girl with spinal muscular atrophy. I was wondering if someone could tell me how should I act with her, can she feel if I massage her or tickle her tummy? I know that people with SMA are intellectually able and in most cases quite advanced mentally but I would really appreciate it if I could hear from a mum or caregiver. Someone who has SMA would be a great help too coz you would definately know. Thanks |
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Sun Sep 5, 2004 11:03 am |
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4 |
| Mon Jul 17, 2006 4:53 pm |
| Mary |
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I have a 10mnth old son diagnosed with SMARD1.
Up untill now we have borrowed a hospital basinet to bath him in. He is growing out of this really fast and we are trying to find out what to use to support him while we bath him in the big bath! He is very week so we have to support him constintly. Please all suggestions are welcome. Mary, south Africa |
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Wed Aug 11, 2004 10:51 pm |
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1 |
| 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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