Regarding the diuretics...

[Jessica's Mom]

Thanks for all of the wonderful info, but one of you said your child got off of the lasix with no problem and one of you said that your child needed them longer. How did you know that your child still needed them? I have been giving Jessica half doses and she has been doing fine, but the doctor wants me to up them because we are starting to sprint her, he doesn't know that I have been giving half doses, my peditriacain does, they would like her off of them completely. But now the lung doctor says we need to up them? I am confused about this and I don't know what to do. How do you know that your child really needs the diuretics?
Thanks again,
Denise
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MEDICAL MARIJUANA

[christyw]

Lasix is a really strong diuretic that I was told shouldn't be used long term if other options are possible. Gaithy was on long-term hydrochlorothiazide and spironolactone, (both diurectics, one of them is potassium sparing - unlike lasix), from the time she was a tiny preemie all the way up to this fall (which was about two years total). This past fall we dropped the spironolactone completely and cut the chlorothiazide's dose in half. In fact, this half-dose IS NOT EVEN "EFFECTIVE" as a diuretic, but the kidney doc wants to keep her on it for other reasons (relating to calcium build up in the kidneys and one small kidney stone). So, basically Gaithy is not on an effective dose of diurectics and hasn't been since the early fall (2002). As I mentioned in another post, we started a sprinting regimen in the summer - so we stopped diuretics just after starting to sprint- and the pulmonolgist is the one who did that, he had NO problems with it because she was doing fine on an "uneffective dose" anyway, and Gaithy has been 100% all right, but we had to watch her closely the first few days just to make sure she didn't really need the meds. What they generally do here is let the child "outgrow" the dosages and if all seems fine then there's no reason to keep on giving. If your child is doing all right with 1/2 doses now (which may not even be weight appropriate and effective) then she probably just doesn't need them anymore. You are going to need to discuss this with the pulmonogist though - I would just tell him/her what you've been doing and they will see that Jessica doesn't need the meds...hopefully.

christy

[Laurie]

There were two ways that we knew Evan needed a dieretic - when he was in the hospital he retained lots of fluid (puffy feet and hands for example) and his respiration rate would go up when he built up excess fluid in the lungs. A dose of Lasix would bring his respiration rate back down, and his sats would stabilize. As Christy said, Lasix is nasty, so our docs wanted Evan off it ASAP. However, he did not seem to do as well on the aldacteside (more fluid build up, etc) and his bloodwork showed he was tolerating the Lasix well, so we kept him on it. I was surprised they took him off cold turkey, but he did not retain fluid, urinated OK (sometimes kids become dependent on dieretics to urinate), and had grown his way into a better place with his lungs, so he did not need it anymore.

To summarize, if you try stopping the dieretics, I suggest you monitor lung function (respiration rates and sats), urine output, and fluid retention (puffiness of hands, feet, face) and if none of these things change, your child is ready to go without. Those were the things we looked at. Good luck!