Child on reflux medications - other options?

[countrygal]

I've posted before about my dd who is almost 6. She's seen a GI who I am underwhelmingly impressed with... seems like she already knew what was 'wrong' with her before doing any tests. She referred her to behavioral therapy for feeding therapy - which she very well needs. However, I'm not sure what good therapy is going to be if everything she eats hurts her (read on...) The food list of what she eats is dwindling. I pushed for the EGD because she complains of swallowing, stuff stuck in her throat, gunk in her throat, and spits food out more frequently in the past couple months (although started over a year ago but has gotten worse.) To me she looks like a celiac child to me although blood tests were normal (slow growing, tired, craves only bread, chronic stomach pain- 75% of days she complains of it since she could talk. She even has dental enamel defects on her baby teeth and I found a chipped tooth this week. Can a non-celiac gluten sensitive child have growth issues without celiac-like intestinal damage? I've had other people comment on her size and thinness - yet the doctors think she's 'fine'?)

 

She found 'mild reflux' because of nodules in her esophagus (I could see them on the pictures before she even mentioned them.) I don't think reflux in a child is 'normal' no matter how 'mild' it appears. How can visible damage be 'mild'? How can it be 'mild' if it effects her every time she wants to eat? She stated that she took biopsies of all the areas she was in to test for eosinophils and other damage all though she said everything else looked normal. It'll take a couple weeks to get results back. Mean while, she wants her to be on omeprazole. I feel like that's a bandaid. Yeah, maybe it'll help heal her esophagus, but once she gets off of it, it'll come back unless we find the culprit. Does all conventional medicine just rely on pills??  This ped. GI acts like "She has reflux, deal with it." DH says I need to figure this out on my own with an elimination diet. I would like to try gluten free and possible milk free to see if it helps. I'm scared though - what is she going to eat? She eats no fruit or vegetables except canned pears, only breakfast sausage and occasionally baked chicken (once a month maybe?). She doesn't even like most crackers. I want her to have no sugar as well. If I de-gluten her, will her taste for other things come back? I don't know where to start: Meds for 2 months and see the GI again or do a drastic diet change? I asked for allergy tests from her ped and 2x with this GI but no referral (I'm going to call her ped. and insist.) I don't really want to find other doctors at this point. Has anyone helped their child with reflux? Thanks for listening.

[IdahoHomeschooler]

Why not trial the reflux meds for a few months and see if some of the symptoms are helped? If she is able to feel better, her feeding repertoire might improve, making an elimination diet more doable, if you wish to pursue it. I don't know of any non-medical or non-surgical options to "fix" reflux, but I would be thrilled if there was! I hate having reflux, but my Prevacid is a godsend.

[housemouse]

I will state before hand that I am not an expert. I am an adult with what they call mild reflux. The dr put on Prilosec and I only took it for 4 days because it made my symptoms much worse. Dr answer to that is come back and we will try another pill. I did a lot of reading and what helps for me is sleeping on multiple pillows for elevation so that acid does not come up. Big help was lemon and water. Turns out lemon is a natural acid neutralizer from what I read. In the beginning I drank lemon and water a lot and it within a few days I was almost back to normal. I think it took me over 2weeks of drinking lemon and water to get full effect. Make sure your child drinka it through straw if you try with end of the straw as far back as she is comfortable so the lemon does not hit the teeth (enamel and acid). I darnk it before every meal and sometimes inbetween. Now it is only as I need it for maintanance. Limiting glutein and sugar also helped alot. I had that food stuck in the throat before and now I don't anymore. You could try limiting as much sugar ( sodas and such), gluten ( there are fluten free bread mixes, pancake mixes and pasta) or just replace with rice. No barley, chinese food (gluten in soy sauce). You could try limiting, eliminating milk too- it takes 17 days for milk to get out of your system. And no food 2 or better, 3 hours before going to sleep. Nothing overly rich or greasy (fried stuff) for a while- that is the worst.
Whether lemon and water works or not you should now pretty fast because you will be miserable so you may want to have anti acid meds handy.
So sorry your child is having to deal with this. It is not fun at all. You could try this and see what happens. If it doesn' t work, try the meds and see if you can find another doctor who does not have his mind made up before he even sees your child.

[Tiramisu]

Nexium helped my one dd a lot. She was on it for a few months. She only needs it very occasionally now, and never for extended periods, a couple of days usually takes care of it. 

 

I have two more on it now.

[HS Mom in NC]

Chiropractor.  The nerve you use to spit up/vomit is where the base of your skull and top of your neck meet.  Many infants with this problem find relief with a chiro. My middle daughter spit up every time she nursed for the first 6 weeks.  She also had 6 hours screaming fits from 6pm to midnight every single day.  We took her to a chiro.  It was fixed within 2 weeks-completely normal kid after that. She was breech until week 38 and a c-section because the placenta detached.  Those are both terrible on a baby's neck.  So are forceps and vacuum extractions.  

 

My middle daughter's neurologist at PHX Children's hospital recommends her headache patients, especially those with vomitting, see a chiro. Starting at age 9 she had 6 hour migraines with vomitting again. The neurologist said sometimes the skull fits so tightly at the top of the spine some patients have vomitting and headaches. the MRI showed my daughter's neck bends the wrong way (forward instead of backward) which puts all kinds of pressure all over the neck. She also recommends all her patients see an acupuncturist.  Some, like my daughter, find huge improvement with the chiro, some don't.

[datgh]

My ds has Eosinophilus esophagitis.  It showed up as swollen areas in his Esophagus and the eosionphils where present when the swollen areas where biopsied.  He had trouble swallowing food because it would get stuck and found himself drinking a ton while eating just trying to get the food to go down. It also would get really painful as food went down.  It finally all came to a head when he got a piece of chicken stuck that required an emergency room visit to get it removed. Up until then I had just chocked up his complaints to eating to fast and not chewing his food. He was finally diagnosed in January. He has been on Prilosec OTC and Flovent since then.  Flovent is used usually for bronchial asthma because that is caused by eosinophils in the bronchial tubes.  Ds swallows the medication rather then inhaling it.  I don't know how long it all went on with my son.  I think he always thought it was normal to have to eat the way he was. He is now 17. Since he started the medications in January, he says it is getting easier and easier to swallow.  Things no longer get stuck!  He is thrilled. We are very grateful that we finally have answers.  The only drawback is that this may very well be a chronic, lifelong condition that if it isn't treated can cause some pretty permanent damage to the esophogus. While I am not thrilled he may be on medication for life, it beats the alternative. 

 

I don't think it would hurt to talk to an allergist but be prepared to not figure out what is causing the problem if eosinophils are involved. Something triggers the eosinophils to migrate to the esophagus. My understanding from talking to my sons gastroenterologist and through my own research is that sometimes you get lucky and figure out what triggers the problem and sometimes you just don't know.  It doesn't necessarily have to be food related.  It can be environmentally triggered too.  My son has no food allergies but he does have environmental.

 

I hope you get some answers. It is so scary when something isn't right with your child.

[bensonduck]

If she's thin and bread is one of the only foods she eats, I would be very very reluctant to eliminate gluten without the supervision of a medical professional. It just seems like taking away one of her only comfortable foods would do more harm than good.

Does she eat any dairy or soy products? Has anyone mentioned those could be a contributing factor? I have a dairy sensitive DD who had severe reflux till she was nearly 3 and still has it but not as bad. Eliminating dairy and taking Prevacid daily made things manageable when it was severe. We got her off the Prevacid at 3 but she is still unable to eat dairy without severe reflux within an hour and lasting a few days.

Reflux comes with lots of issues. My DD still has a very short list of food items she will eat but it has expanded some. She would only eat oyster crackers and cantaloupe until about 4.5. Now she has some fruits and vegetables and grilled chicken, beans, etc. It has gotten better. Her teeth are also a mess because of the reflux (according to her dentist). There is decay in unusual places from all the acid flowing into her mouth.

I understand your reluctance to try meds. What if you tried for just a few months to see if it helped? The way I understand meds from our pediatric GI is that they are not something that a child should be on for their whole lives but it can help stop a cycle of severe pain. Which will then help her feel better enough to eat a bit more, etc.

Wishing you and your family the best. I know this is a difficult situation.

[countrygal]

Thanks for all your understanding and replies. I guess my main fear is that the omeprazole will be a cover-up for a bigger problem. The GI said we'd wean her off after 6-8 weeks. But I'm afraid it'll come back and I won't find out if there is a culprit food or foods. Her GI called today (surprise!) and said the biopsies are all normal, so no eosinophilic esophagitis thankfully. I think I'll do the medication and hopefully she'll start eating better once she feels better. I'm scared to take out gluten because the alternatives are not nutritious. She does eat cheese and yogurt on occasion although that has been less than she use to. She hasn't drank milk in over 2 years. The chiro is a good idea. I know one at church that I could talk to. I was thinking of seeking a naturopathic doctor of some sort but not sure what. Even a nutritionist can talk all day long about what she should eat but that doesn't mean she'll eat it.

 

It's just frustrating. I feel something else isn't right, but the doctors don't see it.

[sbgrace]

I empathize. My son had severe (as in bloody mucus) reflux. It took us a full 18 months to get his pain under control, and the feeding issues from that continued for a very long time. He was failure to thrive because of the eating problems. He resisted swallowing liquids for years, but we finally worked past that. He still has texture issues, and is a very picky eater because of those. But he's worlds better than he was. We've made very slow progress over the years. Anyway, I feel for you.

 

I'm glad they ruled out EOS disease. They didn't biopsy for celiac while they were in there? I think it's reasonable to expect a blood allergy panel. They did this with my son. Now that I think of it, they did it prior to looking for EOS (which they thought they would find). Maybe the lack of that is why they aren't thinking food issues for her. You could see an allergist, who would probably test. But realize that food allergy tests have pretty high false positives. Limited diet alone can lead to the poor growth and other issues. Do you give any vitamin or mineral supplements? Has she been tested for deficiencies?

 

My son was taking a PPI 3 times a day at high doses. It took that to get his reflux under control. I hated that he he needed that medication. I completely get what you're feeling about the band-aid. But root causes can be hard or impossible find. And, sometimes they aren't fixable. Sometimes it's just structural, or low tone, or similar impossible to address things. My son was on PPI's for nearly 4 years. But he needed them.

 

I'm sharing this because getting the reflux pain under control was absolutely vital before working on the feeding issues.

 

I researched and there aren't a lot of effective non-med options if food isn't your culprit. It wasn't here. We tried various elimination diets, and he was gluten and dairy free for almost 2 years. It really didn't help. His allergy tests at the time were negative. Chiropractic didn't help us with the reflux. You might look into acupuncture/acupressure. I want to say I read some hopeful things about that possibly.

 

I would push for a celiac panel if the GI didn't biopsy for celiac. Biopsy is the gold standard for celiac, and I wouldn't pull if that was negative. At least I wouldn't do it now when she hurts and is so limited.

 

My son has a very slow GI system generally. Speeding that up, and dealing with any constipation, really helped his reflux. This isn't uncommon when there are those types of issues. If you see sluggish GI or constipation, definitely address that. We started melatonin around that time. Now there is research showing melatonin supplements can help with reflux. He needed it for sleep. I don't know if I would do it otherwise. I might. We also raised the head of his bed (on blocks) around 7-8 inches. He still sleeps on that incline. Six years after finally going off PPI's, he's back on prilosec post surgery for a structural issue strongly associated with reflux damage. I don't think he's still refluxing, but it's giving me pause. I'm not sure where we'll go from here.

 

Give her effective (proven) probiotics and possibly digestive enzymes. Supplement b12, iron (with vitamin C), and zinc. Those will go a long way to counter-acting the negative things about PPI's. She likely needs the medication, and I know that stinks.

 

 

[kroe1]

Our friend had this problem. She finally had a physician check her for a double aortic arch. After intense surgery to repair the congenital defect, she was cured. The double aortic arch had formed a vascular ring around the esophagus making it very difficult for her to eat. She would spend a very long time eating and some she would "spit" out as she was trying to swallow. This would not show up on an EGD, by the way. I cannot remember if our friend's double arch was found on an echocardiogram or another test. But, it was the very last test the doctor thought about as necessary. This had been going on since birth and the child was 9 when the real problem was discovered. I am not saying your child has this, but something to look up and think about.

[applethyme]

My son has crazy gi issues.  There are a few things that help.  He takes Prilosec in the morning and zantac at night.  I has really helped heal the soreness from his reflux so he is eating a few more foods.  The other thing is I have to be very diligent about making sure he has frequent BM's.  The gi tract is like one big garden hose.  If it doesn't come out the end can't put anything in the top.  Probiotics also help.  I will also give him infant gas drops if he is gassy.  By doing all this I have seen a huge improvement in what he will eat.

[Tiramisu]

I'm agreeing with sbgrace and applethyme about making sure things are flowing through the entire GI tract. My dd's gastrits was worst when she was backed up....It just took a  really long time for us to figure it out how bad it was. It has never been as bad again after that problem was solved. 

[Jennifer132]

My dd developed reflux at around the same age. She started randomly throwing up at night. This went on for a long while before I figured out it was reflux. Eventually she started self limiting foods and everything had to be plain. We actually tried the Fiengold diet and it helped her reflux alot and she started to open up her diet to other foods. But it wasn't totally effective, so we went to a combo of meds and the diet. Eventually we went to just the meds. After several months, she no longer needed the meds, but had developed a yeast overgrowth due to them, and again complained of stomach pain until I finally realized it was yeast. We then did Dianne Craft's Biology of Behavior, and since then she has not needed any meds, nor complained of any pain, and also now eats everything!