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Sat Aug 12, 2006 7:16 am |
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| Wed May 9, 2007 3:09 am |
| andrewturing |
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Our daughter Katie has had a night cough to varying degrees for 4 months now. The last 2 months have been terrible. It starts as soon as she lies down and she finally gets to sleep properly about 3 hours later and then her cough wakes her up about 6 hours later again. About half of the time we also get a couple of coughing bouts in the night which each take half hour to hour to clear. She does not cough during the day EXCEPT when in the car! WHY?!!!
I have consulted the Brompton (via the phone) who say it's reflux and have prescribed 2 medicines - 3 weeks later and no improvement. They also say stop her night feeds (which we won't) but the dietician says 45ml per hour of feed would no way make the difference. We have put her on her ventilator for 8 hours per night over the last 9 days and no improvement except that she coughs up loads of juice for the first hour of the day. She can't tolerate having her ventilator on whilst coughing so that restricts when it can be put on but it does for the most part allow her to sleep the full 8 hours once she has gone. (but she need about 11 hours!) She already has a steroid inhaler and it is not an astmatic cough but a juicy one. We have her top half propped up as much as we can when in bed and we do a bit of chest physio when she tolerates it. The GP has done a sputum sample and it has come back normal and we have changed her prophylactic antibiotic.
My question is - what are we missing? Would the ventilator clear it eventually it's just a long haul? Or would a suction or cough assist machine help? Or is it something else? Has anyone else had the same experience and if so what did you do to help??
ANY ideas at all would be gratefully received as we are all suffering from severe sleep deprivation and not enjoying our summer holidays!!
Steph |
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Mon Jul 17, 2006 4:58 pm |
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| Our son has Smard1. He has slight movement of his arms and we are hopeing he will be able to us an electric wheelchair. We are wanting to somehow set the chair up with a computer so that he can use his chair joystick to control the computer mouse and therefore use it at school/ Has anyone got any experience with combining the two or even just info on mainstreeming a severley disabled child in a chair with very limited movement. Luke is also on a ventilator which makes normal chairs etc unable to use. mary-mom |
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Mon Jul 3, 2006 11:11 am |
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I just wanted to draw your attention to the item on the News & Views page about a TV company who would like couples with experience of Type 1 & SMARD to get in touch, especially those thinking of future pregnancies.
If you're interested, please visit http://www.jtsma.org.uk/news_tv_prog_type1.html |
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Wed Jun 21, 2006 7:14 pm |
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| Mon Jul 17, 2006 4:40 pm |
| Mary |
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| Does anyone have any information of numbers of people with childrfen with SMARD in the UK or of any research going on into its treatment. I have been told that PDG would be possible - technically but not possible because of the sample size needed for the license. Does anyone know if any of these issues are being addressed? |
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Mon May 29, 2006 10:35 pm |
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| Fri Jul 21, 2006 10:18 am |
| lilias |
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| Hi, my niece has just been diagnosed with SMA, not sure which type yet. She's 4 months old. We are trying to find a neck support, as she's unable to hold her head unsupported. Anyone know where I could buy something suitable, or any advice that may be useful? Thanks x |
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Sun Apr 23, 2006 1:49 pm |
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Has anyone had a recurrant cough bringing junk up I am 30 and up till this last year have never had a problem but this is driving me mad I also seem to have allergies could this be a possible course of the coughing and junk on my chest?
I also need to find a good seating company as I am having problems with this now also can anyone recommend a good place to get intouch with? |
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Tue Apr 4, 2006 11:14 am |
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| Wed Feb 28, 2007 10:43 am |
| alison |
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| my daughter has SMA type II and is 5 years old and it has been mentioned that she may need a sleep system has anyone had or got one and has it been of any use |
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Wed Nov 2, 2005 10:04 am |
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| Fri Feb 29, 2008 5:04 am |
| Rosserbunch |
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| Hi there. We have a daughter Katie nearly 5 who has SMA2. We have been struggling for over a year now to get her weight up but it seems to have remained at the same level for that length of time now and we are being seriously advised by the H/smith to have a gastrostomy fitted and to give Katie a slow trickle feed at night to top up her calories. Can anyone let me know their experiences either bad or good? I know there are so many pros but I am also concerned about the negatives and whether either we or Katie will then just 'not bother' or 'give up' at least trying to eat proper food and meals. Sorry but I don't want her tube feeding to be a 'cop-out' of the normal life which we want her to have as much as possible. Thanks. |
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Fri Jun 24, 2005 6:35 pm |
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| Sun Aug 20, 2006 9:29 am |
| tig |
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| we are having a horrible time coping with this and sma type1/2 what medications and amounts are people using? |
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Tue May 3, 2005 3:33 pm |
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| Mon May 16, 2005 5:07 pm |
| Sandra |
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Nearly 8 weeks ago my son Ben (age 4, severe type II) had a gastrostomy operation with a Thal fundoplication. He is putting on weight and seems to be filling out a little (may be our imagination!) but my question is this: Ben needs "venting" (ie air let out of his stomach via his tube) an awful lot, sometimes 20 times a day/night. Is this usual? He has a PEG at the moment. Would things improve with a Mickey button?
I look forward to hearing your experiences!
Sandra |
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