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We just had our daughters genetics rerun and her unidentified gene has been identified. She has N1303K which we knew, and del e22-23 which was the unidentified gene. The cf doc said that the second gene is along the same lines as deltaf508. Aside from that and telling us they are rare he...

My oldest got her first port 8 yrs ago. It lasted 7 yrs and was the best decision we ever made. She blew thought picc lines like there was no tomorrow. My second oldest dd just got her first port. She is 14, just had her first tune up in 5 yrs. when they attempted to do a picc it failed...

My daughter was just in for a quick tune up and surgery while on cayston. We brought the vials and saline in with the exact amount that would be needed for her stay. We explained everything to every nurse that came in. Her cayston was kept in the nurses fridge so the rt had to get a nurse to...

Both my DD's have feeding tubes, they got them right around 7ish. We didn't have any issues with constipation after the proceedures. My first DD had a fundoplycation done with her g-tube because she already had massive reflux. It was so bad she thought it was normal. My 2nd DD was able to...

My DD had a broncoscopy last Tuesday on the 15th. The CF doc said it could take 2 weeks to get results on some of the tests they were running. Today on the 21st the CF nurse called saying the results were in and she "only cultured staph and Stenotrophomonas". When I asked her about the other...

My son first cultured it when he was 6 months. We did one round of Cipro and Tobi. He is now 10 and hasn't cultured it since and his PFTs are usally over 110%. Jen mom to 4 kiddos. 3w/cf and 1 lucky red head.

I would strongly suggest NOT using Rite Aide. Could just be where we live but every shipment of Pulmozyme for my kids was messed up and had to be reordered. Dealing with them was just a constant battle for all the meds. We ended up finding a local compound pharmacist. Before I switched all...

When my son first cultured PA at 6 months he was put on Tobi and Cipro. He hasn't cultured it since, he is 10 now. They told us some times it works some times it doesn't. Good luck I hope you little one gets to feeling better quickly and you can get some answers. Jen mom to 4 kiddos. 3w/cf...

Thank you nmw0615. Her last bronc was in January right before she was admitted. Supposidly this showed nothing but staph. A few years ago she coughed up a sample that showed Zygomycetis, a fungus. She hasn't cultured it since so her doctors are assuming it was a contaminated sample. The...

Just curious why you have choosen to pick at my thread when I was asking for help? The problem with your logic is I AM following doctors advice and she is getting worse. So I was wondering if there had been something maybe they were missing. Doctors are human and *gasp* do make mistakes...

GEEZE thanks Bill what WONDERFUL support much appreciated. Trust me I UNDERSTAND what the disease is, I was almost thrown in jail when she was a baby trying to find out what was wrong with her. So yeah I got a pretty good idea. Maybe instead of having such a smart alick response and actual...

Debbie, I am so sorry to read about your daughter. This just sucks. Is she on a feeding tube? My oldest is and she gets 4 cans a night and drinks one during the day with half and half, whole whipping cream and a carnation instant breakfast. I hope this next round of IV's will help and they...

I HOPE you guys get some positive news. Reading your reply brought tears to my eyes that we are not alone. Right now they are insistant she start in the hospital. My biggest issue with it is her blood sugars shoot sky high because she is just stagnant in the hospital. She's not allowed to...

So my oldest DD is done with IV's AGAIN. We have been on this horribe cycle of meds. She will do oral antibiotics with little effect her PFT's drop to 30%, she starts IV meds, after those are done Dr. puts her on Cayston. After about a month of Cayston being done she is coughing horribly...

Have they thought of doing a fundoplycation? My oldest was about 6 when she had her done. She would cough and puke up phlem because the reflux got so bad. We didn't know it was bad because she never complained about it. When they scoped her they found scaring all through out her...

With my kids I am aware of people looking when they cough. We practice the cough in the hands and use purell afterwards technique. Mainly because when we tried the chicken wing thing their shirts were nasty and wet. Figured it was safer for them this way. People stare or glare. My usual...

My DD is on IV's right now through her port. She typically uses a half inch but the hospital and visiting nurses only carry a .75 inch. Which in the hospital is ok because then they can use the bio patch underneath. Lately though the needles have been failing. Once when we were in the...

My first thought was can you get the Pulm or CF nurse to visit the school? Maybe see if they will do an education day with the kids. Since they are older bring the pictures of lungs, maybe a few videos of they day to day life with CF. Sorry to hear your son is going through this hopefully...

I think it is still possible he could be obstructed. My DD was pooping up until the night she doubled over in agonizing pain and we found out she was seriously "back up". Is he on Miralax at all? After my DD's issue and we got her to the point she was pooping clear, her doc put her on mirilax...

My oldest DD has had significant vision loss in the past few months. We took her to get her eyes checked yesterday and the doctor said he thinks she is having possible nerological issues in the back of her eyes. The best he can get her vision with glasses is 20/30 and that's also with...