Reflux Meds

[bryantem]

Addisyn has been on Zantac since feb and is now trialing previcid. I am thinking about requesting to d/c her meds because they seem to make no difference. We have also never had any tests to confirm that she has reflux, so I am not convinced that she has it. I feel like I am wasting time and money going to the gi because they do the same thing the ped does- weigh her, up her meds, tell us what calories she needs and what foods to feed her. Does anyone's ped manage their kiddos gi issues?

[TommysDad]

I would never let our general ped manage Tommy's GI issues. She never got it when she tried to tell us to feed him 2 TBS, JUST 2 TBS of rice cereal mom when my kid had a complete oral aversion and was 100% g-tube fed and wouldn't even let you touch his lips let alone shove cereal in his mouth! We knew right then this doctor was not fit enough to take care of Tommy's G-I needs. We have a nutritionist through Early Intervention (and I can't believe at Tommy's IEP meeting, the public school agreed to contract this nutritionist out privately for Tommy's feeding & nutritional needs, but I'm so grateful). We do see a GI doc, but he's a joke! This doc is so scared of Tommy, he'll barely even touch him! So, I take Tommy out to Ohio's Airo-Digestive Team and to talk to his fetal surgeon who is also a pediatric surgeon who did Tommy's G-tube surgery. Together, we cover all Tommy's G-I issues.

But as far as anti-reflux meds...Tommy's Ped wanted to discontinue them. I said we can't do that without talking to Tommy's ENT surgeon, Dr. Cotton. Dr. Cotton's team even knows that after 2 pH probe studies, Tommy does not show signs of reflux. However, he was still vomitting a lot at the time, but regarless, Dr. Cotton seems to prefer his patients to be on anti-reflux medication (and at the maximum doseage allowed) because they want to make sure that airway does not get any more damage due to acid errosion. They told us that makes the airway that much more complex to repair when the child is ready for an airway reconstruction procedure. Then, even after open airway reconstruction, they max out the dosage of anti-reflux medication to protect the surgical site. Tommy no longer vomits like he used to, he's had 2 double staged LTPs, neither one secured an open airway. Dr. Cotton isn't even thinking about another surgery for several years, but they still keep Tommy maxed out on Previcaid. My opinion is if one of the top ENTs in the world suggests his airway patients take anti-reflux medications, even if just for preventative measures, and you can get insurance or state aid to pay for the medication (we even had to have Dr. Cotton's office send in a letter of medical necessity), then you do what they suggest if you think the preventative measures far out weigh any negative side effects of the drug. We don't skip any doses in our house. Our boy's got enough airway issues as it is!:o

~Maggie

[kshell]

Natalie's surgeon who placed her gtube and did her nissen manages any gi issue that comes up. Natalie never had confirmed "reflux", but the nissen was done in a last ditch effort to get her off the vent in the nicu.

Pulm does not want us to discontinue her reflux meds, though her surgeon said we can. For pulm, it is more about the acid that is in any possible reflux, not actually stopping the reflux if you know what I mean. The acid is what they are most concerned about.

I would discuss stoppping the meds with her ENT as well as they may also be concerned about any acidity issues.

Good luck,
Karen

[Niff]

I think with typicaly healthy kiddos, pediatricians manage their nutrition and reflux. With kids with airway issues and increased risk of aspiration, I would be more inclined to have a specialist handling the condition; however, that also depends on how confident you feel in the pediatrician's ability to manage the condition/situation. We are bringing a nutritionist on board to handle Mackenzie's feedings. I feel that our pediatrician could do this if necessary, but she's generally not used to kids with g-tubes and micro-managing their diets. We have a GI consult out, but in our area there aren't any appointments available.

As far as reflux meds go, I think parents expect them to decrease the amount of spits and that's simply not true. Most meds for reflux (including Zantac and Prevacid) change the acidity of the stomach contents, so in the event that the child refluxes, it isn't going to eat a hole in their esophagus (or possibly their airway if they aspirate). The only med that I'm aware of that is thought to decrease spitting is Reglan because it speeds the process of food through the digestive tract.

We don't have scheduled appointments with anyone to maintain Mackenzie's Prevacid dose. When I notice that she seems to be getting more uncomfortable with her spits, I put in a call to the pedi to weight adjust her meds and fax the current RX to the pharmacy. The office manager will ask Mackenzie's current weight and have the pedi write for the correct dose. I feel comfortable with this, as does our pediatrician. Our pedi and I agree that the less time Mackenzie spends in a doctor's office, the better (with respect to contracting airborne illnesses) so the more we can manage at home the better.

I wouldn't suggest DCing the anti-reflux meds altogether (ironically I'm usually an anti-meds and more of a hollistic healing person), but you can inquire about managing some care at home and not having to bring Addisyn in to the office simply to be weighed. Your docs may not feel comfortable with this, but it's worth a shot.

[KJKK8437]

You know, I love our pede, and I'd trust them to do anything just about, but I'd still keep the GI.

Let me say that I didn't think much of our GI guy for the longest time, and the reason I began to fully trust him is probably irrelevant to you. So let me tell you what good I found our "useless" GI doc to be. (And truly, I thought he was useless for a long time.)

If you have NG/G tube issues, they are better equipped to handle an after hours urgent call that might keep you *out* of the hospital.

If your pede doesn't have privileges at the hospital, your GI will and can beat back the residents.

In my experience, pulmonary folks tend to want to feed airway patients more calories than typical kids. This may not be as relevant to you because of lung issues, but not every airway patient needs "super" calories. Our GI doc gave me a different calorie perspective to consider. In our specific case, he was reading Alex's needs more correctly because he was *not* trying to factor in work of breathing issues burning extra calories. (Alex had only structural issues with little if any work of breathing burden.)

If you run into insurance problems, your GI doc may have a lot more weight with his prescriptions and appeals than your pede because s/he is a specialist. Also, if there are feeding issues going forward, you may want to have a GI doc discussing another viewpoint from your pulm too. While our GI doc was quite passive for a long time, he was more inclined to weigh in favor of letting Alex try to eat, while the pulms all wanted to play it safe and wait, wait, always wait.

In the end, I practically fell in love with our GI doc because he was extremely familiar with the LTP procedure that Alex went through, and our pulm wasn't. He knew why (in our case, why not) to order GI tests and where to put the medicine levels in anticipation of, and in recovery for, the LTP.

But, if your GI doc doesn't have a good resume, these things may not mean a whole lot in your case.

[faywrayy]

Kate was put on reflux meds the day before discharge because the ST saw some emesis in her mouth and a milk scan showed proof. Because she was discharged the next day, no GI was involved. Within a week of her coming home, she was back at CHOP (silly parents who hadn't figured out her baseline yet) for puking. They put her on Prevacid (she was already on Reglan and Zantac) as well. Her pediatrician managed her reflux meds from then on, controling the dosages and the rx and she did fine - no puking unless sick. He tried to wean her from the meds when she was 9 mos. We got her off the Zantac with no problem, but when we tried to wean the Prevacid, she started puking. Now right around this time, she was getting sick so no one knew if it was the Prevacid wean, or just Kate being sick that caused the puke, but I put her back on it and we kept her on it. That Dec (when Kate was already 15mos) we finally saw a GI at the request of her ENT and only to monitor her reflux throughout the LTP process. The GI was helpful managing doses, but she didn't do anything more than our ped had done.

Ped worked fine for us, but I still question whether she even had reflux to the extent that she really needed meds.

[bryantem]

She didn't leave the NICU with GI- the only reason she was on any meds was because she spit up once during a feed. Weeks before that incident, she was dc'ed of all of her meds. She was discharged on reglan. When she was in the hospital, they put her on Zantac. I really don't mind giving her the meds, but honestly, you can't get them in her. She hates the Zantac and spits it out. We can get it compounded so that it is a flavor that she likes, however the compounding pharmacy is 45 minutes away and last time they didn't compound it- even though I requested it and paid for it- it costs me about $5-$10 more to have it compounded so that she will take it. Add her pulmicourt and aldactone and it all adds up. It doesn't matter if you put it in milk or juice, she knows it is in there and it comes right back out. She doesn't have a g-tube or an NG tube and takes everything by mouth. Pulmonology says she doesn't need the meds and there have been some recent studies released stating that Prevacid does not work well for infants. His opinion is that if it doesn't hurt- don't give it to her. As for the calories- she is jumping precentiles, so she is on basic 20 cal breastmilk and 2 feeds of solids per day. She weighs 17 lbs at 8 months old- larger than my son at 8 months old, who was also full term. She is probably off the charts for her gestational age.

Her pediatrician is very good and familiar with special needs kids. She takes care of kids with trachs and NG tubes. I honeslty wouldn't trust another Dr with my child. I trust the ped more than I trust GI and I don't see the point in regular visits since we don't even see the GI Dr and they don't really manage anything that the ped doesn't. I think I will talk to her pediatrician when I see her next month. If I could cut out one more copay and drive, that would be wonderful. This is getting expensive as her copays can be in excess of $100 any given week depending on the appointments she has- and I don't see the point in going when all they do is weigh her, tell me what solids to give her and increase her meds based on her weight.

[bryantem]

[QUOTE=faywrayy;195848
Ped worked fine for us, but I still question whether she even had reflux to the extent that she really needed meds.[/QUOTE]


I also question if this reflux actually exists. Yes, she did spit up- like all babies. My oldest was a happy spitter, and I probably would have believed them if they said she had reflux. However, her ENT didn't even suggest reflux after her initial bronch, and she exhibits no signs of reflux. She has the typical infrequent infant spit ups and as she is getting older, that seems to be going away. Everybody assumes she has reflux because she was a preemie.

[saywhatyouwill]

I also question if this reflux actually exists. Yes, she did spit up- like all babies. My oldest was a happy spitter, and I probably would have believed them if they said she had reflux. However, her ENT didn't even suggest reflux after her initial bronch, and she exhibits no signs of reflux. She has the typical infrequent infant spit ups and as she is getting older, that seems to be going away. Everybody assumes she has reflux because she was a preemie.

and no one ever seems to give a straight answer about whether there is reflux or not!

[lynn]

WE are using Prevacid right now/ previously also had pulmicort/ and zantac. We have gotten a GI just recently- before that all gi care /meds were prescribed by the ENT. The bronchs showed some eosinophil cells in esophagus- But I wanted a truer answer about the reflux and insisted the GI doc be able to do a full scope- ENT doesnt go down far enough. We still dont have a clear answer about all issues- we need another scope by GI in 6 mos after being off the other meds for that time. Joseph does have some reflux, and that is why we kept prevacid- just to not cause any damage to esophagus/ larynx/ lungs.
If you feel the ped can handle I would ask if they would do it for you- unless there is a clear need for a GI doc I wouldnt bother to go to the extra appts- due to the copay costs, and also the risk of getting infections from another kid-- We also take all meds by mouth, and I know your frustration of the spitting out- We have one med that is not covered by insurance- and I need to refill every 2wks at a compounding pharmacy, because of its shelf life- drives me CRAZY when he refuses to take it. I just keep hoping he will soon realize it is a fight he will not win, and it would be easier to cooperate.

[JacobKaden]

We were having all the same questions as you are, a year ago. We were giving prevacid somewhat sporadically because we didn't think he had reflux either. Sure enough, shortly thereafter, Jacob was inconsolable (crying, arching, acting like a colicky baby) and we could not figure out why? After seeing all of his various specialists, we took him to his GI who took one look at him and knew he had reflux. She changed us to losec, which tastes horrible, but we managed to get it into him orally (prior to N-G feeding, which we now do). Within a few weeks, he was a different kid! I would err on the side of caution on this one.

[GabesMom]

Thickening Gabes food has really eased his reflux and he is on prevacid (sp?).

[Kaylie]

We use to use zantac along long time ago, it did nothing for Kaylie at all. when she was a baby she throw up all the time, non stop, after about 2 months or so we switched to prevacid and have been on it for at least 5 years, we know that she doesnt have reflux unless she is sick, but we also know that using the prevacid is keeping her airway safe from damage, so thats why we continue to use it. i know what it can be like for copays and travels to get all the meds and appointment, we travel, weekly 180 miles for the ent and pulm.
as far as using your peds for meds i dont see a problem unless there is something she or he cant handle.we use to see gi and feeding clinic, but at this point we dont see any of those, but we do have a nutritionalist. ent, pulmi, endocro, and peds, and may have to add a nuro to the list, so i don know the time thats consumed with everything and i feel for ya. hope things work out for you. when we need refills on meds we use whatever doc we are at when we need them, all of Kaylies docs will give her scripts, but we usually either get it from ent or peds.

[bryantem]

Well, I bought one of those medicine spoons and hopefully that will make the Prevacid a little easier. I am not going to bother with the Zantac for now since she will not take it easily. I can see taking it to protect her airway, but I am sick of getting the run around as to whether she has reflux or not. Speech says that she was arching her back in the NICU after and during feeds. True- but she also couldn't breathe during her feeds due to tracheomalacia. I will still talk to the ped about managing her reflux. She was originally going to manage it when she was discharged and still would be if the PICU didn't consult GI to answer some random questions I had. It was my choice to have GI follow her at that time- I was asked if I wanted them to see her. Now, I don't see the purpose in it. Our next visit will be in 2 months from now. It's not too bad, but a hassle and waste of my copay and insurance if it is unnessesary.

[drct1245]

How often would you say she spits up? Is it more than the average kid... it's one thing to spit up and it's another to either have reflux or need to protect the airway. Ayden would throw up, there was no spitting up... I don't think he had true reflux as he didn't have the symptoms, but when Ayden went on Prevacid, the throwing up each day was cut in 1/2. So we knew immediately.

You have an advantage as you have witnessed first hand baby spit up vs reflux.

If your pulm is OK w/ it believes it will not impede on the airway, I would double check with them to make sure. I would document the spitting up before you take her off and after. Just a thought...

Our pulm actually helps us a lot w/ our "reflux" issues. At this point, it has all to do w/ allergies and drainage... the poor guy has SOOO much even w/ allergy meds. We are working up on the allergy meds as I don't want to give him too much, yet I don't want him throhwing up every day.

[bryantem]

Honestly, it's been a while that she has spit up. Maybe a couple of times in a week, sometimes not. If she does spit up, it is when I am walking around with her and she burps and spits on my arm.