Posted By Posting
Nov 20, 2011
skohanek
Reflux, Virus, Nexium, and Zantac
We have an almost 4 year old who has been on medication since he was 1 for reflux. He was on Prevacid from age 1 to age 3 1/2 and never had any problems (other than lots of spit up). In May 2011, something just erupted (probably related to seasonal allergies), and we have been on the reflux roller coaster ever since. He is 90th+ percentile for height and weight, but about every other month, he has an episode of tummy pain, not eating, not sleeping, and then turning from sunny disposition to a kid I almost don't recognize. He's getting over a virus now, and the reflux is back in full gear. He currently takes 20 mg Nexium twice a day (40 mg total) and 1 1/2 teaspoons of Zantac at bedtime. In September, he had an upper endoscopy and an impedance probe. His diagnosis was mild to moderate reflux. My questions are medication and expectations related: 1. Does anyone else have kids who take this much medication and still experience reflux problems? 2. Is it generally expected to deal with reflux for 1-2 weeks after a virus? His fever did get up to 104. Does my story sound at all familiar to anyone? I'm so frustrated by the amount of medication and that we live our lives by the clock. It's also so hard to watch him not eat. Thanks!
Nov 20, 2011
skohanek
Follow-Up
I should add that he was tested for food allergies and celiac (4 vials of blood), and everything was negative. Our pediatrician, however, believes we should stop dairy to see if that helps. She really believes in the dairy-reflux connection, even without an identifiable allergy. Since dairy is his only source of protein (other than the occasional chicken nugget), I hate to stop it. Thoughts?
Mar 22, 2012
bonnie09
My son
wow. I felt like I was reading about my own son! My son is 3 1/2 and has been on 40mg Nexium for about a year now. He still doesn't sleep through the night and he lately has been showing some signs of refluxing even on that amount of of Nexium! It's horribly frustrating. He too was tested for every kind of food allergy, he does have allergies to peanuts, tree nuts, and very mild egg allergy. He was also tested for milk as well, but that came back ok. I wonder if a mild intolerance would come up in testing though?? Gunner's seasonal allergies are a big trigger for his reflux as well. Anytime he gets a sniffle, or drainage, he won't sleep. I think the nexium keeps him pain-free, but the little guy will not sleep! I'm going crazy. ha! I think we may try ruling out foods. I have already figured out some of his triggers, tomato-based sauces, spicy, greasy, and too much seasoning. I'd like to hear more from you. At least I know I'm not the only one not sleeping due to reflux!
Mar 23, 2012
skohanek
Commiserate
Hey Bonnie, Well, I can say he's sleeping better, but the reality is that I sleep with him. When this all started about a year ago, he was in such pain that all I could offer him was myself as comfort/company. Since he is my only, I have the luxury of being available for him without the demands of other kids. The GI specialist wants us to wait until after seasonal allergy season and then about mid-May, wean off of the dinner-time Nexium. The last time we tried a wean, it took a week and a half to recover. It was brutal, so I'm not looking forward to trying it this time. But maybe things will be different. The GI also thinks potty training and popping/constipation are exacerbating everything, so now he takes fiber gummies, and today, I started giving him Miralax. He went abot 4 days without a bm, so it was time to do something for him. We had him tested for environmental allergies, and he was negative for absolutely everything. That said, he also uses Flonase in the morning and Patanase nose spray in the evening. The good news is that the last two times he's caught a bug, even when one went to a sinus infection, he never referred to his tummy. On the other hand, the longest he's gone since complaining about his tummy is 2 1/2 weeks, another reason I'm not looking forward to trying a wean. But, I also don't like him taking all this medication. It was supposed to be temporary, but a year later, he's still on it. He's pretty stoic about it all and just takes it as it comes. He's also used the tummy reference to get my attention (when I was on the phone), so that's something else I'm having to watch out for. We finally did elevate the head of his bed, and whether it's coincidental or not, he's been sleeping better since we did. I remind myself that so many kids have so much worse to deal with, but when it's your own, you just want to feel it for them so they don't have to deal with it. Matthew is also supremely picky, so eliminating foods would be tough. That said, he stopped drinking milk although he'll eat yogurt and cheese. I worry about calcium, vitamins, nutrition, sleep, long-term effects, everything. So I know you're going through something very rough. It just seems like with all this medication, they'd be okay. I hope you get some sleep tonight! :-)
Mar 23, 2012
bonnie09
thanks
My little guy seems to sleep well with me as well, but we have never let him sleep with us much. I think we are going to try raising the head of his bed even more and see what happens.

Gunner has the same tummy issues, constipation to the point where he was vomiting and was admitted to the hospital. So we maintain with fiber and miralax as well. Funny about your guy being pretty laid back about it, so is my son. He takes his meds like nothing! haha

I feel the same way about other kids, I know there are kids that are worse off, and I do feel for them. But these are MY kid's problems and they HURT him, making me his best advocate. I am bothered by all the meds, but I really hope he will grow out of all of it eventually... or tomorrow! :)

Thanks for letting me

Mar 23, 2012
bonnie09
oops!
Thanks for letting vent!

It feels nice talking to someone with a kiddo with similar issues.

Mar 27, 2012
skohanek
Venting
Hey Bonnie, When all of this started, almost a year ago, it was scary. Even though he'd been on Prevacid since he was 1, he had always eaten and slept well. When the pain started last May, he was going to sleep on his own and sleeping through the night on his own. Life was good. Then, literally overnight, he started thrashing and crying at bedtime after screaming through a 2 hour car trip (which had never happened before). And, at 3 1/2, he couldn't exactly articulate what was going on. It was awful. We went to the pediatrician every week, and things got better, but he was still in pain. We started seeing the GI specialist in July, and he doubled the Nexium from 20 to 40 mg. One of the things I'm really grateful for now is that Matthew will take the Nexium capsules. Although he was willing to take the packets mixed in grape juice, sometimes I knew he wasn't getting all of the medicine. Even though the past year has been a struggle, and even though my own stomach knots up when he mentions his tummy, things are okay. He can articulate where it hurts now. Unfortunately, this morning he woke up at 6:30 with a tummy ache. I could tell it was bad because he kept tossing and turning and finally gave up trying to sleep. But, he didn't have a bm yesterday (too much info?), so I told him it was probably due to that. We have a lot of conversations about eating right and going to the bathroom in the hopes that he'll understand he has at least some control over things. After some Miralax, things improved. :-) I wish I could offer you sleep advice, but I am the last person to offer that. At Matthew's 4 year well-check, the pediatrician asked me about sleep, and I told her I'm doing everything wrong, and I'm okay with that. So she said we'll talk about it when he's 5. I comfort myself with the thought that independent sleeping is a cultural thing, and if we lived in a different country, we might all be sleeping in the same room and not knowing that, according to all of the research, we're somehow damaging our kids for life. :-) Anyway, having someone to talk to helps me cope more than anything, and I'll admit. My mom and my husband are both tired of hearing about it. I did talk to one of the volunteers from this website, and that was really helpful. Sometimes, you just want to know that you and your child are not alone. Like you, I'm hoping that Matthew outgrows this, but I'm starting to realize that he's probably going to have tummy issues for a long time. They're not debilitating. He has bad days once in awhile, but he goes to preschool and takes karate. I told my mom that he can either be an invalid or he can be a kid who gets stomach aches once in awhile (about once a week currently). Whenever you want or need to talk, just let me know. Once the medical options have been explored, sometimes you just need Mom back-up/support. :-) I hope he starts sleeping better soon, but I do believe it will get better, especially as he gets older.
Mar 30, 2012
bonnie09
poor thing!
No fun when they aren't feeling well. Gunner has had a hard time too, taking meds, he spit out a whole teaspoon of his zyrtec the other day... I about fainted. haha

Miralax really helps Gunner too. Gunner has been coming to my room and sleeping on the floor next to my side of the bed... little sneaker! He is so quite, I don't notice him until it's about time to get up.

My husband and mom are the same way! The husband makes me second guess my "mother's intuition" (or whatever they call it), and my mom makes me feel like it's not a big deal. But who knows, maybe they just can't see it from my perspective, so I am his biggest advocate!

Check with your
doctor first!