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Hello, everyone, My husband and I feel like our bottle sterilizer we have been using to clean Sam's pari neb kits is just not working. It's been so long since we boiled them, we are not sure the time for each step. Is it boil the water for 30 minutes, then boil the pieces for 10? Or is it...

Hello, all, We live in Tennessee and both my husband and I work for the state. We had awesome insurance, but a few legislators and leaders made the decision to switch to insurance which is no where near as comprehensive. I would like to try to fight this. My child has a bright future and we...

My husband is a state employee so we have pretty good insurance, but on July 1st they are making some changes. We now have a prescription card that only lets us use certain pharmacies. They have their own specialty pharmacy where we must order our pulmozyme and Tobi. We will have to get...

I read somewhere that people had written to senators? What can we do? Who can we write? I don't want my little boy to suffer or stop growing when his Pancreacarb wears out. Having CF is hard enough without having a medicine that makes your life so much better become unavailable. I want to...

Hello, all, I talked to one of the CF doctors from my clinic today. I asked him if Sam will ever get back to 28 days on, 28 days off, and he said, no, he'll always be on something. He said that the CF center is one of the most aggressive in the country, and that he is the most aggressive with...

Sam is taking 5 pancreab-4 with each meal, and recently has had bowel movements which suggest he needs more. I started giving him 6, but his clinic told us to cut back to 5 because that is his maximum. We go to see them on Thursday and they will test his stool to see what is going on. He did...

Hello, everyone, Sam kicked the pseudomonas only to have it come back after going off of Tobi. So now he is on Cipro, Tobi, and Cayston, alternatively forever and ever. I took him to get his RSV vaccine today, and the doctor said, "We can sterilize the lungs for these kids until damage is...

Hello, All, I know it's maddening, all the things we can worry about. I am worried about Sam having allergies, and how this might affect his CF severity and lung involvement. I suffered terribly from allergies as a child, and still usually get a sinus infection every spring and every fall. My...

Do you use a dehumidifier in your home and can you recommend a good one? We are buying an air purifier, and the person who tested our house for mold recommended the Whirlpool Whispur 510 although it is hard to find. Before we invest in a dehumidifier, want to make sure we are getting a good...

Hi, all, Sam has finished 14 days of IV antibiotics due to culturing pseudomonas and is doing great. However, immediately after going off of antibiotics he came down with a cold. He has felt fine through all of this, and the cold is not too bad. My question is based on what I am reading on...

Hello, Everyone, There is mold behind the linoleum in our shower stall. My husband just sealed it up with chalk. I am trying to motivate him to remodel quickly! The thing is, he has been told that mold is everywhere and our child will encounter it even just walking outside so not to panic...

Hello, again, Sam's doctor recommended a bronchoscope after he cultured psuedomonas. I was very saddened to learn that his lungs are already blocking up with mucus. The doctor wants to wait for the results of the bronchoscope before admitting him for an IV of antibiotics (4 days in the...

Hello, everyone, Last week, I told the nutritionist that I wasn't getting enough milk using the pump to give Sam a calorie boost using a tablespoon of formula. That has been our recipe for helping him gain weight - one bottle of pumped milk with formula, miralax and salt, once a day, and...

Hello, all, Since Sam's PA diagnosis, we have started the Tobi, and will visit the clinic on Wednesday to discuss possible hospitalization. I'm just not sure what to expect now. I had just gotten adjusted to the idea that he had CF, and now I have to wrap my mind around PA. I need words of...

Hi, all, Getting ready to do Tobi for the first time and the clinic is closed. We also do hs saline. We have two pari cups, but only one mask, so we will have to sterilize the mask between each med. Is this the correct order? 1. two puffs of albuterol 2. CPT 3. inhaled TOBI ...wait 30...

Okay, I posted the same question in the families section, but I wanted to hear from people who have lived with CF their whole lives. Can I work full-time and be a good mother to my child with CF? Please don't be too harsh. I do have to work for very practical reasons. We don't live...

Hello, everyone, Reading the Mums with the Blues post made me realize I am feeling really anxious about returning to work. I have been lucky to be home for four months, and am scheduled to go back when Sam is six months (in March). I am a teacher, so I'll work until early June, and then have...

Hi, all, Sam is reaching for food at the table like crazy. I would like to start him on some rice cereal. Right now he is a breastfed baby. He also gets one bottle a day of 4 oz. breat milk, a tbsp. of formula, a tsp. of Miralax, and a dash of salt. He is gaining weight fine. He will be 5...

Hi, everyone, This is sort of an update on Sam's cold. Sam had a cold that started twelve days ago. He has been on an antibiotic for 10 days, and still has a runny nose. I have felt some crackles in his ribs, so the CF team urged us to come in tomorrow. They also said he might have to be...

Sam keeps needing more and more enyzmes. Every month, he adds a pill. Right now, he has to have three spoonfuls of applesauce to get them all. He is taking 4 Pancreabcarb-4 with each feeding, and he is at four months. Is this normal? Of course, he is 16 pounds, and growing well. How many...