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The GI prescribed the Milk of Magnesia, so we have the dosing (although I'm starting a little slower than he suggested since my little guy sometimes reacts more strongly to some of these things.) My DS doesn't eat. He's 100% liquid through a bottle still. (We're working on it.) I stopped the...

Aboveallislove - We're giving milk of magnesia today to see if he needs to be cleaned out or not. Do you know what test they can do to confirm bacterial overgrowth? Thank you!

I have an 18-month-old son, 24 lbs., PI, severe reflux that we control with a couple of medications, chronic constipation that we control with Miralax. None of this has changed in several months. Same medications. Slightly different doses as he's gained weight. At our last clinic appointment...

This might sound silly, but it might help. Is there some way you can reward yourself with a tangible reward? Like, is there something nice you really want or a nice restaurant you really want to try but don't have an excuse to splurge on? What if you made a list of your treatments on a...

Lety -- With us, periactin started that way, too. He slept all day and was pretty crabby. It was a pain getting him onto the periactin, but we were able to counter the side effects this way: What we did was start with a very small dose. So, originally he was prescribed 5mL once a day. That...

Have you tried periactin for appetite stimulation? We use it on our toddler, and it's helped immensely. (Got him from the single digit height-to-weight to above the 50th in a period of less than three months.) It's an antihistamine and the only other side effects we've noticed has been that he...

I know I'm very late to this conversation, but my son (17-months-old) actually takes three doses of Miralax a day to keep him cleaned out. We do 12 grams when he wakes up, 12 grams 4 hours later, and 3-4 grams 4 hours after that. (A small dosage change seems to go a long way for him, which they...

You might also want to try probiotics. My understanding of them is that there are different kinds filled with different flora and some of them work better for some people than others. You might have to try a few to find the right one or combination of one that helps you. (Of course, if your...

We call our pharmacist every time we fill Creon to remind them not to open the original packaging and just give them to us still sealed. That way, we know exactly what the expiration date is for each pill and we get to open a new pack every few days.

Janelle -- Are you on FB? If you pm me your email address or a way to find you on facebook, I can invite you to a private group that has a ton of families with g and gj tubes. (Only a couple of CF, but they're very useful with a lot of CF-related stuff like this.) Erin

Welcome to the community! Four more things I don't think I've seen mentioned that you should ask your clinic about (or with number one just get used to doing.) First, get in the habit of washing/Purell-ing your hands a lot. Get the rest of the people living in the home used to doing it, and...

Our clinic told us there are two ways to dose enzymes. The first is based on the weight of the child. (This was not working for us. Our son was getting a ton of calories and not gaining ANY weight.) The other is based on the amount of fat the child is getting in his diet. When they switched the...

I can't be much help since we've never flown (internationally or not) with our CF-er. But, we have done car trips. For pulmozyme (our only refrigerated medicine right now), we bought a small medical cooler that only requires that ice be added every 12 hours. (This might be harder to find in...

The way we were taught to do it (and this is why it would be nice if there was consistency between clinics since everyone does it differently) is: Every day, after treatment, we rinse the neb/spacers in warm water. Then, at the end of the day, we wash the pieces in hot, soapy water. We place...

That's a great weight gain. Congratulations! Something to ask your cf team about... even without reflux, sometimes cf-ers' bodies are too acidic naturally and cause the enzymes to break down too early in the digestive tract. A lot of cf-ers (even newborns) take a very small dose of reflux...

Bella's-mom -- If she gags and vomits a lot, you should pay attention to her reflux. Does she have a lot of symptoms of uncontrolled reflux (even on prevacid)? Hiccups a lot, burping, can you feel stuff moving back up if you put your hand on her back? Our son has been on zantec, prevacid, and is...

Hypertonic saline and pulmozyme attack the mucos in two different ways. Most kids above a certain age and adults are on both from what I've read. There is a copay assistance program through genentech for pulmozyme, as well. You have to register once a year, but it helps some. I think your...

Will he drink from a bottle? My 16-month-old still refuses to eat food, but he'll drink. I came up with a mixture of stuff for his bottle that got him from the single-digit percentile for height-to-weight up to over the 60th percentile in a period of a few months. (Our hospital said they'd never...

We leave to go to doctors appts., swim lessons, the zoo, and to healthy families' homes. Otherwise, we tend to skip the play dates and inside places with him during the sickest times of the year, at least at this age. We don't have any other kids, though, so it's not that big a deal.

We had it last year, and got denied :( by our insurance company this year, even after our doctor appealed it and the insurance company's doctor said that he agreed that our son needed it. I would get it for him again without a doubt. At this point, we're probably looking to not do too much away...