Posted By Posting
Jul 09, 2009
Holden's second opinion
We had Holden's GI appointment today with Dr. Putnam at cincy. He was wonderful. Surgery wasn't mentioned and when his GI fellow asked me why we were changing docs I told her I felt like our other doc had us pinned with the only option left as surgery. She said she didn't think he needed surgery at least right now. Dr. Putnam made a couple of changes. First decrease his Prevacid from 30 mg to 15 mg using Maalox for breakthrough pain. He said his scope showed no damage and that with that high dose can come loss of appetite as well. I am scared to do this but will listen to him. Holden's probe was done on the 30 mg of prevacid and showed 202 episodes of reflux with only 2 being acidic. This probe was done off his Reglan though. So Dr. P wants to increase his Reglan to .9 ml 4 times a day. He wants to decrese thickening of his formula (to see if he will digest it better) and try going back to soy formula instead of Elecare to see if he still has allergies. He wants to see us back in one month. I told my husband that with him wanting to get him off his elemental formula, I wouldn't be surprised if he wasn't thinking about rescoping him. He is the EE specialist and we have a strong history of food allergies. with my older son. Anyhow I guess it is increase motility med, decrease prevacid, decrease thickened feed, change formula. We are suppose to make one change at a time over the course of the next few weeks. I'm very nervous about decreasing his prevacid but hoping increasing the motility med will help. Thanks for all your support. We're heading to the beach tomorrow!!!!!
Jul 10, 2009
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
I would do all the changes and leave upping the reglan for last. I don't want to be "Debbie downer"...but I did want to make sure you are aware of the possible side effects of reglan. I promise I'm not trying to scare you, just making sure you're informed :)
Jul 10, 2009
Thanks! You're not Debbie Downer. The med changes were the first thing we were doing b/c he believes that Holden's reflux is caused by motility. You can hear the milk sloshing hours later. It has also been documented by an emptying scan. Yes, I receive emails all the time from lawyers, etc. but for Holden the benefits outweight the risks (aspiration-which has happened, either a J tube or a nissen). When Holden is not on the Reglan he vomits so that he doesn't wet diapers, gets choked, etc. It has really been a Godsend for us. Dr. Putnam assures me that the only time he has ever seen a reaction (and he has been in the business for years with some serious patients) is when the kids were dosed too high or in children that already had neurological issues and that the side effects are easily noticeable and that Holden really needs it. Erythromycin makes the vomiting worse. It is ashame that more motility meds aren't available to kids in the US. I do as well as the doc believe that many kids are being prescribed reglan for reflux and it IS a motility med so a lot of these kids do not need this drug. If we just lowered his Prevacid without upping the motility med Holden would be in big trouble. I am glad the FDA put out the warnings on it b/c many docs are prescribing this med unnecessarily and parents arent' aware of the dangers. But thankfully Holden has tolerated the med well thus far but it is very weight sensitive and the alternatives to this med are just as risky if not more to me.
Jul 10, 2009
I was thinking of you the other day. It sounds like this gi is going to have a lot of different suggestions to help you out. I hope that he helps Holden get much needed relief and you too. Hopefully the doc gets him eating better for you. I know how exhausting that has to be for you. Good luck with all the changes. Keep us updated on how it's going! Have a great time at the beach. We usually go to the beach every summer but this summer we aren't. Kody can't take the long drive that it takes us to get there. But we're still going to get away next week for a little time away but only a couple hours drive. Yeah!!
Check with your
doctor first!