Need advice about reflux returning in three year old

[conradsmom]

Hi all-

Please bear with me here....I know this is a long post but I would greatly appreciate any feedback possible.

I am brand new to this group, but unfortunately not brand new to reflux. My son turned three August 1st and has been suffering from reflux (at least we think it's reflux) since birth. He was born near term at almost 35 weeks.

A little background info regarding his reflux and growth.
My son has been on and off the charts for both height and weight since around 9 months. He spit up constantly since birth but around 9 months to a year the spitting up turned to vomiting. He has NEVER been a good eater and had pretty bad texture aversions until almost two years. Somewhere around two years old he slowly quit vomiting so I thought the worst was over and at his two year wellness checkup he was at the 5th percentile for weight and at the 20th percentile for height (love those growth charts ) Currently he is below the 5th percentile for both height and weight. He put on 1.5 lbs and grew 1.5 inches from 2-3 years.

I won't go into all the minute details but it appears as if his reflux is making a comeback. Only now it's more of a silent reflux since he doesn't vomit all that often any more. Instead he will choke and cough when he eats. His appetite is HORRIBLE. I keep a feeding journal for him and a typical day for us is around 500-850 calories. An amazingly wonderful day --which is hardly ever--might be 1000 calories. Prevacid and Zantac have never seemed to help in any way.

We just finished up bloodwork and an upper GI which were all normal. I go over all of his symptoms constantly trying to find some sort of correlation between food, time of day, anything! So I'm wondering if anyone might have some experience or some feedback on some of his issues. I never really get much of any answers from the doctors and I'm not sure why. Sometimes I feel like I"m going crazy, but I simply cannot give up until I know for sure my son is healthy and not suffering or in any pain. Now that he is verbal he will tell me things like, "I get sick in my mouth" or if I ask him where it hurts he will open his mouth and point inside.

In addition to the normal choking and coughing while eating he has one other weird symptom. I know this may sound strange, but has anyone ever heard of a correlation between lowered body temp and reflux? Every time we give him a bath at night, after we take him out of the tub he gets very cold (toes turn slightly blue) he'll start to shiver and then the coughing and gagging begins....sometimes he will vomit. Before he turned two he would ALWAYS vomit after his bath. Has anyone ever heard of this before?

The next step for us is the scope which of course I don't want to do and I'm actually wondering if I should have him tested for allergies first before we go ahead with the scope. Has anyone ever done allergy testing first before the scope to make sure it's not EE (Eosinophilic Esophagitis) rather than reflux? Or is the scope inevitable?

Thanks for listening and all feedback is greatly appreciated!

[amy5045]

Welcome to IRD! Sorry to hear your son's been through so much, and still is suffering. Is he currently taking any medication for his reflux? If so what's the dose and how many times a day?

I am not sure what exactly a scope would accomplish since he is verbally telling you his reflux is not under control. Do they have another reason to do it besides confirming that yes, he does have reflux and it is damaging his esophagus? If however you do end up needing to do it I will tell you it's not too bad, at least it wasn't for us. My dd was only a tiny baby when she was scoped but everything went smoothly. Just to give you some comfort in that area!

Anyways I'm sure others will chime in. I'm not sure about the allergy testing as we never did any. I hope you're able to get things sorted out soon for him!

[conradsmom]

Hi Amy-

Thanks for your reply.

We had him on 15 mg of Prevacid a day but that didn't seem to do a thing so I took him off of it. I see from your profile your daughter has been on a few meds and I'm wondering if we should try him on others as well. Or maybe increase his doseage? 15 mg doesn't seem like much to me.

The only reason for the endoscope would be to test for Eosinophilic Esophagitis I guess. I've read it's becoming more prevalent and mimics reflux most of the time. But you are definitely correct. There's no doubt he is refluxing. I guess the question is, is it due to reflux or EE?

Have you found any meds besides zantac or prevacid that made a difference? Did your doctor ever suspect EE or any other allergies at any time?

-Angie

[amy5045]

Some kids do need a higher dose. There are several on this site that are on 30 mg a day because 15 mg didn't do it for them. Or some respond better to Prilosec which is another PPI. I'd definitely get him on something, you just have to play around until you find what works. Be aware though that it could take about a month to see improvement because it takes two weeks or so to enter his system and then another couple weeks for the damage to his esophagus to heal.

Yes I suppose it could be good to rule out EE. We did the scope not to check for EE but to make sure my dd's meds were working (she seemed better but still wouldn't eat so we weren't sure).

We personally did not find any meds to be helpful except for Prevacid but it really depends on the child and finding what works for THEM, kwim?

As far as allergies, our first GI did discuss that possibility and had me do an elimination diet to see if helped (I was breastfeeding so anything I ate would get to her). However we didn't find it made any difference so we never pursued allergy testing. This was just our case though, many refluxers DO have allergies, especially to milk/soy.

Hope that helps! I know it's a lot of info to take in...

[Jannette]

I just want to chime in and let you know that Prevacid and Prilosec can take a good 2 weeks to begin working and once it does, it will not stop the reflux, just make it so that it is not acidic and damaging to him. My son needs to have 30 mg, he gets 15 in the morning and 15 at night. Also, an upper gi only gives a picture of a small period of time. It is sort of hit and miss trying to catch GERD. Right now, he is telling you that it hurts so I would try to get him back on some sort of meds if your doctor agrees. You might also want to ask for a ph probe so that you can see just how many times a day he is refluxing and how acidic it really is...

[Katey]

Hi and welcome to IRD! We had a similar situation with my son. He was off meds totally for about 4 months and then his reflux came back. He was find on Axid for over 6 months, but then he got very bad again. He was doing the same thing, talking about 'sicky in his mouth' and pointing down his throat and saying it hurt. He would also complain about tummy aches after just about every meal.

We put him back on 15 mg of Prevacid, but he was still suffering. We went up to 30mg and it took almost a full month on 30mg dose before things finally got better. He is now doing great and has not had any pain in a while. He will still reflux but he just goes in the bathroom and spits and goes on with his day. He does not seem to be in pain from it.

I think the scope would be a good idea. It is the only way to test for EE and since he has been off meds for a while you will have a good idea if reflux is the problem and if there is any damage.

[conradsmom]

Okay, I'm definitely seeing that we should increase his meds and give it more time to work. If that doesn't seem to make a difference by his next GI appointment then I do believe we should go ahead with the scope.

One more question for mommies of non-eaters/picky eaters.
-Once the meds kicked in and started working, did you notice an increase in appetite and food intake?
-Has your child ever been on any type of appetite stimulant and did it work?

The dietician gave us some Boost juices and protein shakes to increase his caloric intake. He won't even drink the shakes and the juices make him vomit. Surprisingly he can drink Pediasure with no problem.

[EllaGracesMom]

Ella has never been a huge eater either - smaller portions work best. Prevacid does affect appetite for some LOs, so just be mindful of that. However, if he is unaffected by the Prevacid (in terms of slowing his appetite), I would imagine that he could eat more after his esophagus has healed. I know that if they are low in iron, they may have a small appetite too. Have they checked his levels?