Hi everyone I have a few questions for you experienced GERD mommies (or Daddies, I know there are a couple of you on the boards). First, here is the latest in Asher’s GERD saga. He had his scope on Friday and we’ll get the biopsy results on Wednesday but untill then I’ve started him on Alimentum RTF with 1 TBS of Vanilla Quick since that is the only way he will take it. (I am going to experiment with natural vanilla and unrefined sugar to aviod the artificial colors and flavors, but I need to get to the health food store) For the past few days his reflux has been worse than I’ve ever seen it. He is constantly (during feedings and afterward) gulping very loudly, gasping, stiffening, big time arching & throwing his head back, and most disturbing is his apparent inability to clear it at times and his face turns red and he seems to have trouble breathing. I’ve been keeping the bulb aspirator within arms reach during feedings just in case. He has had several episodes of choking as well during these severe refluxy times. I called his GI today to tell her about this and she said to add ½ teaspoon of rice cereal per ounce of formula and try that for a couple days to see if it helps keep the fluid down a little better. (We have tried thickening before with no improvement, but I’ll humor her for now since I don’t know what else to do). She said to call on Wednesday for the biopsy results and let her know if he is doing any better. She said the next step if no improvement would be Reglan. I am very concerned about putting him on this drug because of all of the potential side effects, but she said she usually doesn’t like to use it unless absolutely needed. If his choking, aspirating and apparent inability to breathe during severe reflux episodes does not improve she feels that would be a benefit vs. risk situation. Those of you who have GERDlings who have taken or currently are taking Reglan, how did they do on it? Did it help? What side effects did they have? Would you suggest that I ask about trying erythromycin first? (I think that is the antibiotic I’m thinking of that has a gastric motility effect with fewer side effects) What are the risks of having an infant on long term antibiotics? Will it effect his resistance to antibiotics in the future when he needs them to treat infections? I’m so tired of this guessing game method of treating reflux in our little ones. They really have no idea what these adult medications will do to our babies in the future. Years ago when Prilosec first came onto the market, my GI would only let me take it for 30 days at a time because it was shown to cause gastric tumors in laboratory rats in rare cases! This is now what I give to my precious baby boy, and many of you give to your precious little ones. I’m sorry this turned into a rant at the end there. I appreciate you guys so much, I feel so much more confident dealing with Asher’s GI armed with information and advice that I receive from all of you seasoned “pros”. I would appreciate any info anyone might have and I’ll update everyone on Wednesday when we get the biopsy results.

Amy,
Emma has never been on Reglan (except for a 2 day trial, after which I immediately stopped giving it to her. She just acted so weird on it..anyway..sorry to ramble :oops:), but she is on Septra (low-dose antibiotic) for her kidney/bladder infections she keeps getting. Our doctor told us once that a drug is only beneficial if it helps more than it hurts. His comment didn't make me feel better because I think a drug should never harm someone to make something else better. However, I would rather deal with Emma's possible resistance to other antibiotics (although research does not show this) than have her go through another 106 degree fever with febrile seizures, constant back/kidney pain, painful urination, possible damage to urinary tract and the kidneys, etc.

I am a little surprised that your doctor is only recommending a teaspoon per ounce. Asher seems to be really choking and gagging on reflux material and that little bit of cereal doesn't seem like it would help that much. I know other moms on here thicken much more. Hopefully someone will respond about that, as we didn't thicken Em's formula.

I probably didn't help you any. I feel like I'm just rambling today. :oops: But, I just wanted to offer my thoughts on the antibiotics.

The feeds sound like they're getting worse, for sure. I don't know how you do it. :hug:

Hi Amy,

I am so glad the scope is done! Crossing my fingers as you wait for the results. I know just what you mean about the meds! It is so hard to know whether to try a medication and hope for the best despite side effects. So frustrating... :hmph:

As far as the motility meds... I can let you know our experiences with both Reglan and erythro, but each kid is so different in how they react. We did two trials on Reglan since our pediatrician was so eager to try it on Nathan. The first trial was about six weeks, and it did seem to help his motility, but made him very cranky and he slept poorly. At that point, though, we weren't sure if his behavior was from the Reglan or reflux. Then, our second trial was for about four days. We could instantly tell that Reglan was a definite No-Go for Nathan.

At that point, the GI put him on erythromycin. It did help the DGE (though maybe not as much as the Reglan), but we saw absolutely no side effects. Every pediatric GI we spoke to were completely comfortable with the erythromycin. Even the ped GI that we stayed with (we seems to be conservative with meds) explained that it is such a low dose that it doesn't even act as an antibiotic. He had no concern with it creating any kind of resistance - which was my worry also. So, in the end, I felt very comfortable with Nathan being on it.

I don't know if I just blabbed instead of helped :doh:, but I guess I wanted to say that each baby is different. There are kids on this site who have done very well on Reglan, and there are kids who didn't do well on erythro. If you try the Reglan, just be aware of the side effects, and you'll know what to watch for.

Good luck AMY!!! Let us know when the scope results are in! :D

We have a little DGE med experience, too.

Daniel was on Reglan for about a month because the amount he was vomiting was just obscene. We stopped it, though, not because he had ill effects but because it didn't help a bit.

Later we tried Erythromycin. The GI prescribed an amount (I forget what that amount was) and told us to work up to it. Well, we never got to the full amount (which was still considered a low dose of the antibiotic). It just upset Daniel's stomach too much. He seemed to be worse than on his most refluxy days.

I know there are other options out there, but I never pushed to try them since D seems to be pretty uncomfortable on any antibiotic.

I agree with Nathan's Mommy on the Erythormycin; our docs said it doesn't create a resistance to antibiotics because it is such a low dose. Chelsea took it for a week and it didn't seem to do much for her besides give her bad stomach aches. That is the most common side effect. She tried Reglan for 2 days before her first fundo and it made her VERY irritable. We tried it on her again almost a year later and she didn't get irritable, but it made her legs give out from under her when she was walking. Very scary BUT when we took her off of it, it went away. I would try it if absolutely necessary--I would say that choking/aspiration issues are serious enough to give it a try. I would arm myself with the knowledge of the potential side effects and journal his day for a little bit before starting and continue after he starts so you can see any developing effects whether positive or negative. If he has side effects and you recognize them right away then remove the drug, I was told it is safe and we have experienced that here.

I am sorry things are so challenging, I hope it gets better sooner rather than later! BTW I think the hypos are thinner than the milk and soy based formulas so maybe thickening it more--more than the doc suggested- if you think he can handle it may help too.

Take Care!

Thank you everyone, I didn't realize I should have posted in this forum. He has never been diagnosed with DGE, he had an upper GI series and barium swallow study... no one mentioned that his gastric empying was slow. Can the motility meds help the severe reflux symptoms even if his emptying isn't slow?

Hi,
Yes they can help. If the stomach empties faster, there is less to reflux on (or so the idea goes....). It works really well for some kids. I have been told by a few docs that all babies with reflux have some level of delayed emptying in order to have reflux. One of the symptoms is spitting up more than an hour after eating---that is a little delayed. Now there is a certain level of delay that must be present in order for an actual DGE diagnosis to be made, and both an upper GI and swallow study would not show that unless he had a small bowel follow through with the upper GI. That would show a general delay or no delay, not an exact amount such as that found in a gastric emptying scan.

Whether it is delayed or not though, the med could help decrease the choking and aspiration episodes. Hope that helps!!!:iconbigg:

Sorry I am late here. Things have been crazy around here. Anyway, I have had experience with both reglan and erythromycin. Of course every baby is different but the reglan did nothing for Sarah. The erythromycin definitely helped but it seems like the effect doesn't last forever. After awhile on the drug there body can adjust to it so that it no longer works. We are at that stage with Sarah. With the erythromycin her emptying improved from 35% at 90 minutes to 52%. We just had her checked again and it is back down to 42%. So we are going to try cisapride. Sorry that was so long but I thought the erythromycin was much more effective for Sarah than the reglan
karie

You can try erythromyicin and/or bethanechol before reglan. We used erythromyicin and bethachol at the same time.

Hello,
We tried the bethanochol for about a month-no help at all. Reglan has done the trick for us. We had a lot of irritability for a couple of weeks-I believe due to stomach cramps. Her body adjusted though and we have had no further side effects. Like they say, every kiddo handles meds/formulas differently but it always helped me to hear what the other Dr. Mom's say because we see and note the real effects on our children. HTH and best of luck to you and your little one. Keep us posted.

Reglan might very well help. True, some kids don't react well to it (mine didn't), but that doesn't mean that you don't try. It sounds like your doc is fairly conservative in approach and doesn't take medicating issues lightly. Yes, there are side effects... but sometimes the benefit of a drug far outweighs the possible problems.

If Reglan doesn't fit the bill, for whatever reason, bethanechol or erythromyacin (sp?) might be of some help.

Reglan scares me particularly because Asher has a heart defect (repaired, but we still have to be careful) and Down Syndrome and no one seems to have any idea how it might effect him. From what we saw following his open heart surgery, certain medications that affect the brain can have some strange effects on him. Apparently people with Downs tend to metabolize some medications differently than their non-chromosomally enhanced peers. See Asher's update in the update section of the board for my update on his GI's plan and his biopsy results.