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| Current topic: Management - Acute Forms |
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respiratory problems |
| 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. |
| Posted: Tue Apr 19, 2005 6:30 pm |
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Re: respiratory problems |
| Hi Diana, my daughter is 22months and has SMA 2. She has been in and out of hospital all winter and had a collaped right lung on the last visit. She is has recovered fully and is on some preventaive medicine which she takes daily, they are Domperidone, Omeprazule and Trimethoprim. The first two are reflux medicines which help her to stop all the snot going back into her lungs and the last one is a anitbotix (can't spell). We have found that this has really helped her. Also she now has 8hrs of community care a week, they arranged for her to have oxygen (emergancy only or when ill), a sats monitor, suction machine and nebs machine at home. When she was unwell two weeks ago she was able to be treated at home and she responded alot quicker. I believe it has all helped! I can't help you with the traneostomy. Also chest physiotheraphy when she is unwell helps keeps everything in her lungs moving instead of getting stuck in one place. She is also getting a bi-pap machine for periods of illness to help her cough. I hope this all helps, it would propably be best to discuss this with your doctor. Take care EJ |
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Re: respiratory problems |
my son is type 1/2 and has has acute repiritory problems for many years.We manage them through the use of antibiotics(to try and limit what infections he pics up)and a bi pap machine which helps keep his lungs inflated and gives the chest a good workout during his sleep.When he is ill i use a oxgygen saturation monitor to check how he is doing and admit him to hospital when his saturations drop thus hopefully intevening before a collapse occurs.Jake has a had a temporay tracheostemy fitted before to aid secreation removal basically he was drowning in his own fluid,there are fours and against having one done.On the plus side secreations are easier to get out and saves trauma on the nose passages when passing catheters.On the down side it is an open wound in effect and can cause more frequent infections to go onto the chest.
The best thing is regular chest physio to help clear the chest with postural drainage ie his head a little lower during physio so hes lying on a downwards slope helps the mucus drain out.And personaily the bpap machine has done far more for my son than anything he uses it during the day whan tired or whan unwell it helps keep the secretions moving rather than settling and causing collapse therfore making them easier to remove.hope this helps. |
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