Sophiesmum
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mummy</b></i>
thx alot everyone!!
Advice seems helpful.... just read it today!
Baby vomitted and choked again. Started gasping and managed to reach her to hospital on time.
She had severe pneumonia and was on antibiotics via IV for 8 days.
they taught me how to suction her lungs and asked me to do it at least 3 times a day!!! Is that normal????? Suctioning, i mean.... does anyone do that???
Was just settling into that routine and she choked again after vomitting..... in ICU again.
The doctors are pushing us to do a tracheostomy........ i cant see any CF people having done that on the net!
Please can s/one tell me if suctioning is normal?? And is tracheostomy a solution????
i really need help, as they are working on her on a trial and error basis!!!
--- for her reflux i give her omeprazole... 1/6th of a capsule.... may be i need to increase that???</end quote></div>
Hi there.
My nearly 3 year old had terrible problems with reflux, mainly due to a surgical problem she was born with but her CF also made things worse.
At 6 months of age, she was only 12 pounds in weight as she was just vomitting constantly and it got so bad that she now has an oral phobia and is too scared to eat orally (she has a button).
You need to find the cause of the reflux. Have they tried different milks? Is she intolerant to lactose?
My daughter ended up on neocate advance as it doesnt sit in the stomach, it is absorbed slightly higher up.
She also had domperidone as this not only works as an anti sickness, it also helps the stomach to empty a little quicker. I'm in England so I dont know the drug equivalents that are used in your country.
Have they done a barium swallow and ph study to see how severe the reflux is? People can silently reflux, which is where gastric content is travelling upwards but you dont necessarily see them vomit. This can sometimes get into the lungs (aspiration) and cause chest infections and pneumonia.
In my daughters case, her reflux was very severe and when they did the barium swallow, as soon as the dye hit her stomach, it shot back out.
We jointly made the decision for her to have an operation called a nissen fundoplication, which has stopped her from being sick ever again. She has hardly any chest problems currently and she is very stable with her weight.
Situations are very different but I think you need to push for them to investigate the cause of the reflux, rather than treat the problems that arise.
We also tried thickening her milk etc but for her, her reflux was so bad that if we'd put concrete in her stomach, she'd have vomitted it out!
Any questions please feel free to message me.
Gemma x
thx alot everyone!!
Advice seems helpful.... just read it today!
Baby vomitted and choked again. Started gasping and managed to reach her to hospital on time.
She had severe pneumonia and was on antibiotics via IV for 8 days.
they taught me how to suction her lungs and asked me to do it at least 3 times a day!!! Is that normal????? Suctioning, i mean.... does anyone do that???
Was just settling into that routine and she choked again after vomitting..... in ICU again.
The doctors are pushing us to do a tracheostomy........ i cant see any CF people having done that on the net!
Please can s/one tell me if suctioning is normal?? And is tracheostomy a solution????
i really need help, as they are working on her on a trial and error basis!!!
--- for her reflux i give her omeprazole... 1/6th of a capsule.... may be i need to increase that???</end quote></div>
Hi there.
My nearly 3 year old had terrible problems with reflux, mainly due to a surgical problem she was born with but her CF also made things worse.
At 6 months of age, she was only 12 pounds in weight as she was just vomitting constantly and it got so bad that she now has an oral phobia and is too scared to eat orally (she has a button).
You need to find the cause of the reflux. Have they tried different milks? Is she intolerant to lactose?
My daughter ended up on neocate advance as it doesnt sit in the stomach, it is absorbed slightly higher up.
She also had domperidone as this not only works as an anti sickness, it also helps the stomach to empty a little quicker. I'm in England so I dont know the drug equivalents that are used in your country.
Have they done a barium swallow and ph study to see how severe the reflux is? People can silently reflux, which is where gastric content is travelling upwards but you dont necessarily see them vomit. This can sometimes get into the lungs (aspiration) and cause chest infections and pneumonia.
In my daughters case, her reflux was very severe and when they did the barium swallow, as soon as the dye hit her stomach, it shot back out.
We jointly made the decision for her to have an operation called a nissen fundoplication, which has stopped her from being sick ever again. She has hardly any chest problems currently and she is very stable with her weight.
Situations are very different but I think you need to push for them to investigate the cause of the reflux, rather than treat the problems that arise.
We also tried thickening her milk etc but for her, her reflux was so bad that if we'd put concrete in her stomach, she'd have vomitted it out!
Any questions please feel free to message me.
Gemma x