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Hey, I would also like to use one for my daughter but am concerned about the cleaning. My daughter cannot used the hypertonic saline 7%, it irritates her lungs. What is a " salt room"? Diana, mother of Natasha DD F508

Thanks for all this info LL, sorry to hear you went through so much!i'm also open to any info I can get on enzymes. Unlike Aboveall, i've been reluctant in increasing the enzymes as I think, too many enzymes causes more constipation. Our GI also says that. I also noticed a consistency in some...

Thanks for all the advice and the support. I've been logging all the food so that might help. I have increased th laxaday to three doses aday. She drinks lots of water. How do you determine the enzymes per meal? I might have to change that too. I went back to culturelle. Let's see. She's at...

Hi thanks for replying. She takes probiotic biogaia but I am thinking of going back to culturelle, biogaia has not improved her situation. How much culturelle does your son take? do you give him adult doses for Miralax? Do you give him milk of magnesia or senn? Or anything else on a regular...

Hey everyone, there is a world GI conference in Banff, Alberta, Canada untill tomorrow. My GI is there and we've been communicating through email. She talked about my daughter to a couple of GI working in CF clinic and they all said she is a very severe case. Last week, she had severe pain three...

Hi, my daughther also got very irritated and started coughing for two hours in a row, having wheezing as well and she does not have asthma. The doctors could not pin point anything as the symptoms started one week after she did the saline everyday. We stopped It and she was better, i started it...

Thanks for your support. I have logged food a few times, haven't found anything obvious. It's when I add a little more oil or butter in the food, it comes out straight, she does not absorb it. I have stopped that now. She's on antibiotics now for her sinus infection. We stopped the flagyll...

Hi, we are back to pain once a week. A little less intense though. From 11/10 in december we went to 7/10 decreasing after passing stool. It's weird, a day after the bomb there is only water coming out and suddenly there is pain and bulky stool. It must be the one that accumulates in corners! We...

This link is excellent. Thanks a lot for sending. my daughter's case is similar to your son. I will be extra careful now in order to pinpoint all the danger foods. The longest time we've had so far without pain since september is 10 days. Let's hope and pray for more.

They can only feel if there is stool that's all. Natasha's belly is always soft too. When they feel something, it's always on her left side, they ask her if she feels like going but she always says no. In that area, she should be feeling she has to go, but it happens much later for her, it moves...

I also thinks that's what it's all about. I tried the bomb with water last time but it tated awful, will try the salt too in the weekend. 8 doses in water is a lot. I am also keeping a log of what she eats just to see when she has oil. I know she is sensitive to cheese so lets see... So only...

One more thing, my GI said she does not want to give VSL as there has not been any study with cf. Weird as they talk about it inthe link I sent. Maybe I should send it to my GI also!

Hi. Thanks for worriying about us. Natasha used to take losec but then we switched to prevacid 30 mg and then 60mg a day, it worked better with her. She did not have reflux but it was to help the enzymes work better. Aboveall.., i was looking at a website for Biogaia that.'s really interesting...

Aboveall you've had more luck than me. It's been ten days we were without pain but this evenig, here we go again, and we're still on Flagyl. I email my GI and i sm giving her more lacaday. She did not clear out completely last weekend, that could be the reason. She also suggested another...

Hi Aboveall.. We made some new additions in the treatment, Natasha still had severe pain two days after clearing out completely and missed a day of school. Ispoke to the GI who added Flagyl twice a day for 10 days. We will do that once a month and one mini-bomb ( 6 caps laxaday and 2 bissacodyl)...

Hi, How many pills was he taking with creon10? How old was he? My daughter hated taking too many pills in school so we changed.

Hi here are some answers: What is "the bomb?" The bomb is 8 doses of laxaday with 700 ml of powerade or gatorade And what is bisacodyl? It's a medication for constipation, the stool comes faster, to give once a week. Is the plan for the first month to do that EVERY Saturday prophylactically...

here are the news I spoke withthe GI this morning, she called me to give results. The biopsies are negative, so no celiac and no chrohn or any inflammation. Which is quite reassuring actually. I was afraid we have to change her diet as she is already quite fussy. She saw a very typical cf...

Hi, They also told us not to play with sand in parks. Wash hands as often as possible. no plants, no pets Never told us any thing about mushrooms, just rotten onions.

I understand it's so complicated. I am confused myself. To tell you the truth, even the medical team is confused, that's what the doctor told me when she was having all this pain so often. I was searching for use of periactin in the net and I came across this study where this pill is given to...