When our daughter Kyra was diagnosed at age 3, I posted often on Cystic-l. I stopped after I found people wandering off the subject too much, and after I had adjusted to having a child w/cf.
I had suspected Kyra had CF because of her stools. I had even broght them in to the Peds office, but they dismissed the greasy (like the oil on top of a can of beefaroni), pale blob as a regular toddler's poop(!).
Before that, when she was a baby, she often spit up (forcefully) her entire feedings, only to gulp more immediately after. I was a 24 hour buffet for her!!!
When she was 2 1/2, the Ped said that her coughing was probably a sinus infection. She had a sinus xray: complete opacification-like a CFer!!! She spent a whole summer on many families of antibiotics.
The Ped said the infections could be due to allergies, so she sent us to an allergist. Yep, she had allergies. I mentioned CF, but they said she was such a healthy looking kid, that she wouldn't have it.
The allergy meds made her coughing better for awhile. Then, Kyra and her 6 month old sister caught RSV. She was so sick that they finally asked to have her tested for CF.
After 3 positive sweat tests, we began treatment at the local CF center. A DNA test told us she was homozygous delta f508. Then we had to test her baby sister, who we found out is a carrier.
There were difficulties adjusing. She started taking enzymes, and hated it. We bought a vest 1 month later, after trying to keep an angry girl down during CPT!!! She adjusted well after we got it. Of course the computer games were a HUGE help.
Six months later she was sooooo sick. She cultured p.a. for the first time. Immediately she went in for 2 weeks of I.V.s We came home and she took TOBI/Cipro.
Now Kyra is 10 1/2 years old. Normally has PFTs near 100%, except when sick. She has cultured staph, pseudomonas (non-mucoid) off and on (only once requiring IVs) in the past, and MRSA for the past 2 years.
Her biggest problems have been sinus related. Last summer, after suspecting she was having sinus problems, not asthma or reflux (negative result on the test). Our old CF center didn't pursue it, so I found an ENT who works with CFers.
A CT showed she was filled to the brim w/ polyps. She had an ESSAL. In the fall she went in for a BAL and sinus debridement. Following this, she started using the Sinus Rinse bottle (2xs/day), and she has been off of antibiotics longer than I can remember.
He recommended another CF Center (he works there once a month). I miss the old CF team and clinic, but this one is closer, and they seem a little more aggressive (I like that!).
Her treatment plan is as follows:
AM: ADEK,Serevent, Flutter, Sinus Rinse (8 oz), Bactrim (currently)
Afternoon: Proventil, Pulmozyme, VEST, Sinus Rinse
PM: Ocean Nasal Spray, Nasonex, Serevent, Singulair, Zyrtec, Flutter, Bactrim (currently)
~also~ Pancrease MT 10 whenever eating
Hope this helps any new families!!!!! Don't despair. It will soon become routine.
KEYS to coping: Don't make treatments optional. Educate yourself, and ask questions!!! Teach your child and others around you.
Kay Walker
Mom of Kyra (10 wcf) and Ella (8)
I always remind myself: "Don't feel sorry for yourself, there is ALWAYS someone who has it worse than you."
I had suspected Kyra had CF because of her stools. I had even broght them in to the Peds office, but they dismissed the greasy (like the oil on top of a can of beefaroni), pale blob as a regular toddler's poop(!).
Before that, when she was a baby, she often spit up (forcefully) her entire feedings, only to gulp more immediately after. I was a 24 hour buffet for her!!!
When she was 2 1/2, the Ped said that her coughing was probably a sinus infection. She had a sinus xray: complete opacification-like a CFer!!! She spent a whole summer on many families of antibiotics.
The Ped said the infections could be due to allergies, so she sent us to an allergist. Yep, she had allergies. I mentioned CF, but they said she was such a healthy looking kid, that she wouldn't have it.
The allergy meds made her coughing better for awhile. Then, Kyra and her 6 month old sister caught RSV. She was so sick that they finally asked to have her tested for CF.
After 3 positive sweat tests, we began treatment at the local CF center. A DNA test told us she was homozygous delta f508. Then we had to test her baby sister, who we found out is a carrier.
There were difficulties adjusing. She started taking enzymes, and hated it. We bought a vest 1 month later, after trying to keep an angry girl down during CPT!!! She adjusted well after we got it. Of course the computer games were a HUGE help.
Six months later she was sooooo sick. She cultured p.a. for the first time. Immediately she went in for 2 weeks of I.V.s We came home and she took TOBI/Cipro.
Now Kyra is 10 1/2 years old. Normally has PFTs near 100%, except when sick. She has cultured staph, pseudomonas (non-mucoid) off and on (only once requiring IVs) in the past, and MRSA for the past 2 years.
Her biggest problems have been sinus related. Last summer, after suspecting she was having sinus problems, not asthma or reflux (negative result on the test). Our old CF center didn't pursue it, so I found an ENT who works with CFers.
A CT showed she was filled to the brim w/ polyps. She had an ESSAL. In the fall she went in for a BAL and sinus debridement. Following this, she started using the Sinus Rinse bottle (2xs/day), and she has been off of antibiotics longer than I can remember.
He recommended another CF Center (he works there once a month). I miss the old CF team and clinic, but this one is closer, and they seem a little more aggressive (I like that!).
Her treatment plan is as follows:
AM: ADEK,Serevent, Flutter, Sinus Rinse (8 oz), Bactrim (currently)
Afternoon: Proventil, Pulmozyme, VEST, Sinus Rinse
PM: Ocean Nasal Spray, Nasonex, Serevent, Singulair, Zyrtec, Flutter, Bactrim (currently)
~also~ Pancrease MT 10 whenever eating
Hope this helps any new families!!!!! Don't despair. It will soon become routine.
KEYS to coping: Don't make treatments optional. Educate yourself, and ask questions!!! Teach your child and others around you.
Kay Walker
Mom of Kyra (10 wcf) and Ella (8)
I always remind myself: "Don't feel sorry for yourself, there is ALWAYS someone who has it worse than you."