snowdeal.org > ex machina: the eric update - day 82: on reflux, reglan and risks.

ex machina

the eric update - day 82: on reflux, reglan and risks.

after a long day of continuing to put the puzzling puzzle pieces together, he seems to be slowly getting better after the surgery. he's stopped puking and is taking his bottles a bit better, although he's "refluxing" his food more than we're comfortable with, which means that it might be getting close to deciding to put him on drugs to control the condition which can have nasty side effects.

it's a difficult decision, but each time he refluxes, he's at risk for dumping milk into his lungs which can lead to pneumonia. and that's really the last thing we need right now. he's also in obvious discomfort and not really sleeping after his feedings. whereas in the past he might reflux a little bit of food out his nose and mouth, we now have to be at his bed constantly at the ready with a burp cloth because at any moment he could be laying in a pool of milk. obviously this is not doing our sleep schedule any favors.

we talked with our nurse tonight who has "parent" nicu experience, as she has a child with a terminal form of dwarfism who isn't expected to live much longer; she was very sympathetic and has given us the most helpful advice that we've heard all day long. every baby will recover from surgery in their own way and since he hasn't had surgery, we can't expect to know how he's going to recover, even if he's done so well in so many different areas. she said that her own daughter took a month took a month to recover from the supposedly routine ROP surgery. she very much knows the risks associated with reglan because her daughter is taking it and she's administered it as a nurse for years. but at a certain point, the risks of reflux outweight those of the treatment. such are the decisions that you have to make as a micropreemie parent - allow your child to remain at risk for getting pneumonia ( and worse ) or put him on meds that could affect his nervous system. difficult decision, no?

i should probably say that we talked with the doctors at both our new and old nicus and none of them preferred any of the common alternatives to reglan and zantac for a variety of reasons, some of which seemed reasonable and some of which just seemed lazy.

so after two days of trying every positioning trick in the book, the nurse said she was going to try a few more ideas ( including putting the milk in cereal ) to control the reflux; as we left, sleepy and frustrated, i gave her permission to start the drugs in the morning if nothing else was working.

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9/24/2004 11:46:00 PM 2 comments

2 Comments:

Hey! I just want to offer you a bit of reassurance if Odin needs to go back on this drug Reglan. Yes, it does have nasty "potential" side effects BUT really, in your case, if nothing else is working, there's side effects of NOT taking the drug too - so, of course it is a hard decision. But if the stuff works to help him avoid pnumonia, then you have taken the lesser of two evils.

And, it doesn't mean your locked into it. In 1/3 of the cases, the drug doesn't work, so you can always pull him back off it later if it's not working. (that's exactly what I did with Ethan - he really didn't spit up any less while on the med.) I would still say continue the other anti-refluxing techniques in addition to the medicine and just be insistent about getting him the minimum dosage that will work for his weight. I mean, for example, if .8 cc would work as good as 1 cc, then go with the smaller dose (that's good advice for any medication really)

I guess what I am saying is don't get too upset over this hard decision as a last resort to prevent pnumonia and other bad side effects of reflux. I know all too well how reflux can effect everything - eating, sleeping, pooping, growth, etc - you just have to get through it as best you can. Cereal in a bottle is also sorta dangerous as you can imagine, if he aspirated that into his lungs, it could be worse than just plain old breastmilk.

Since I was the person who first freaked you out about the drug - I felt I should unfreak you a bit now. LOL This is really about keeping him out of danger as best you can, even if you can never completely keep him out of ALL danger. Once he is a little bit bigger and becomes more of an expert at coughing when something gets into his lungs, you might not have to worry so much about pnumonia and you can reevaluate the need for medicine at that time.

Oh, I did find this site which you may or may not find helpful. This seems much better than the "GERD Word" site that was around when Ethan was a baby.
http://www.infantreflux.org
And don't forget about infant massage (I sent you my class book a while back) - there are several techniques to help GERD babies. I had great success with the sun/moon motions, if I slanted Ethan a bit while doing them. If he was flat, of course they didn't help much. LOL.

I am glad you talked to a nurse who seemed to have a little experience and a bit of sympathy. I hate giant teaching hospitals, but of course there is a need for them to exist.

Hang in there.
C

By Anonymous, at 3:07 PM

it's all your fault! you've turned us into worry wart parents! :-)

thanks for the long comment. they haven't started him on it yet, but i think they will soon because his feedings have turned into three hours marathons of wiping fluid out off his face and more obvious signs of discomfort on his part. they'r willing to try the cereal but they said, as you mentioned, that it doesn't come risk free either.

i think we've cemented our reputations as "conservative" parents when it comes to resorting to drugs, but everyone is being quite thorough in talking with us and addressing our concerns ( well, actually, i should probably note that kris might feel a little differently about that point than i do ).

By e3, at 5:35 PM

ex machina

the eric update - day 82: on reflux, reglan and risks.

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