Thankyou everyone for responding back so quickly.
Hello Melissa, you are so right about all the antibiotic thing,and I know your right about the steroids are not for long term, that was the only thing I could think of for them to give her that would help her quickly..I don't think their taking me seriously on how easily she chokes when she eats.I'm sure this is why she has lost 2 lbs.I think I'll bring a cookie or something and tell her to eat it in front of them,and then maybe they will see how bad it is....
They do have her on prevacid for GERD,which I have never understood exactly what it is,because at the old clinic, you would be to afraid to ask a question. When she's doing the 'seal cough', you can tell she can't get anything out,and when she does ,,it's like she's gagging to death, because it will be so thick and stringy. She does love Reece's candy, I didn't know that sugars might could cause this.. Do you know what I should say to the doctors about how to figure what could be causeing this and how to help with the inflammation?
Hi Stacy,, Makailyn has had surgery for polyps and they removed her adnoids, and said they did a clean out of her sinus's and removed something else in her sinus cavity, but I can't remember what they called it.She has been rechecked this year for polyps,and the ENT,said she did have alot of blockage but it was due to the mucous, not polyps this time..They do a culture everytime she goes in,,because she always has alot of CF bugs....She has had pseudo, and staff always since she was 2 1/2yrs old (that was the age she was diagnoised).
What scare's me alot,, is you are probly right about that it's time for another 'tune up'..I just hate it... She seems sicker getting that stuff,and seems there's always a problem. They can no longer give her a PICC line,,because she has some sort of an allergic reaction to them,,bad reactions !!They said next time they would use something else,,but I don't know what.
Hi Jo, they did put her on azithromycin back in July,and started her on the hypertonic saline solution also...Her daily regimen is pretty long...
She will do xopenex 2 to 4times a day, mucinex 2times daily, pulmozyme,Hypertonic 2 times a day Tobi 28 on and 28off and sometimes back to back for a few months,nasonex, the nasal flushes (to try to loosen that mucous),the zythro 3days a wk, prevacid,merilax daily, and now advair 2times a day (which is easy cause it's in a chamber),of course the vest,,and then all the differnt antibiotics since last July to Dec.and then Feb through Aril,,which was several courses of bactrum,augmenten, ciprofloxin,cleamycin, to omnicef has been the last since the end of April,,I'm probly forgetting something....
CF clinic saw her in April and they will see her again in July.Pedi's office has seen her 3times in May....
Hello Melissa, you are so right about all the antibiotic thing,and I know your right about the steroids are not for long term, that was the only thing I could think of for them to give her that would help her quickly..I don't think their taking me seriously on how easily she chokes when she eats.I'm sure this is why she has lost 2 lbs.I think I'll bring a cookie or something and tell her to eat it in front of them,and then maybe they will see how bad it is....
They do have her on prevacid for GERD,which I have never understood exactly what it is,because at the old clinic, you would be to afraid to ask a question. When she's doing the 'seal cough', you can tell she can't get anything out,and when she does ,,it's like she's gagging to death, because it will be so thick and stringy. She does love Reece's candy, I didn't know that sugars might could cause this.. Do you know what I should say to the doctors about how to figure what could be causeing this and how to help with the inflammation?
Hi Stacy,, Makailyn has had surgery for polyps and they removed her adnoids, and said they did a clean out of her sinus's and removed something else in her sinus cavity, but I can't remember what they called it.She has been rechecked this year for polyps,and the ENT,said she did have alot of blockage but it was due to the mucous, not polyps this time..They do a culture everytime she goes in,,because she always has alot of CF bugs....She has had pseudo, and staff always since she was 2 1/2yrs old (that was the age she was diagnoised).
What scare's me alot,, is you are probly right about that it's time for another 'tune up'..I just hate it... She seems sicker getting that stuff,and seems there's always a problem. They can no longer give her a PICC line,,because she has some sort of an allergic reaction to them,,bad reactions !!They said next time they would use something else,,but I don't know what.
Hi Jo, they did put her on azithromycin back in July,and started her on the hypertonic saline solution also...Her daily regimen is pretty long...
She will do xopenex 2 to 4times a day, mucinex 2times daily, pulmozyme,Hypertonic 2 times a day Tobi 28 on and 28off and sometimes back to back for a few months,nasonex, the nasal flushes (to try to loosen that mucous),the zythro 3days a wk, prevacid,merilax daily, and now advair 2times a day (which is easy cause it's in a chamber),of course the vest,,and then all the differnt antibiotics since last July to Dec.and then Feb through Aril,,which was several courses of bactrum,augmenten, ciprofloxin,cleamycin, to omnicef has been the last since the end of April,,I'm probly forgetting something....
CF clinic saw her in April and they will see her again in July.Pedi's office has seen her 3times in May....