Posted By Posting
May 16, 2008
massfiasco
What do we try next? Meds not working...
Hello everyone- I just came across this forum while looking for answers to my many questions about GERD. I know I have a lot of reading to do, but was hoping that I could get some direction from those of you who have walked this path before me. My son is 5.5 and has GERD. We suspected he had it when he was an infant but I was not willing to do an endoscopy when he was so young. He was high needs, dairy allergic (I was breastfeeding and eliminated dairy through his first year), and a poor sleeper. It wasn't until his normal infancy spitting up continued into his second year that we went back to the pediatric GI. We did an endoscopy and it showed moderate esophagitis. We started prevacid (15 mg/day) and it worked wonderfully. A repeat endoscopy showed no esophagitis. After a period of time (maybe 6 months or so) we tried reducing the prevacid and we were able to eliminate it completely. After several months, the symptoms returned, and worse than before. We tried prevacid again, and it reduced the symptoms somewhat... maybe to 2/3 of their intensity. After a month or two, the refluxing returned full force. Another endoscopy showed no esophagitis. We switched him to compounded Prilosec and there was, again, a slight reduction in his symptoms. However, a month of forcing my son to chug 2 tbsp of ground up prilosec twice per day (which caused him to cry and gag) resulted in us switching to nexium granules. The nexium is also not touching his reflux. Let me describe his spitting up- it's so bad, and so heartbreaking for me to describe. He refluxes probably every 10-15 minutes. I can not relate it to any certain foods. He spits up huge mouthfuls of food that he will then chew again and swallow. He constantly smells like vomit, to the point where I have a hard time kissing him. My husband actually gagged once when my son was whispering a secret to him... It's really horrible and sad. At this point, we are back on prevacid, 30 mg each morning. It's doing nothing. We were instructed to go up to 30mg twice per day for a short time to try to "break the cycle." What is next? Our pedi GI did a gastric emptying study last week and it is normal. He does not recommend surgery because the esophagitis has not recurred. I fear for the damage being done to my son's esophagus, and his teeth. But more importantly, I worry for his social development... I don't want him to be teased for how he smells. I would love to hear any ideas you have- alternative treatments, connections to food allergy, anything. I feel like we've explored all our options and we're just going to have to wait until his esophagus is damaged and then get surgery. My poor son, I feel so badly for him. Thoughts? We feel desperate. kerry
May 17, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
You poor thing! I am so sorry for what you are dealing with! Have they discussed with you the option of a motility medicine or do they feel it is not needed due to the normal emptying study?

There is definitely a connection between food allergies and reflux. I know a lot of parents who have discovered that their child's reflux is related to allergy. Has your doctor discussed the option of seeing an allergist? That may be worth considering. It might also be a good idea to start a journal to record what he eats as well as the symptoms that follow. It might help you to establish a pattern.

Have they ruled out any structural abnormalities (hiatal hernia, narrowing etc...)? Sometimes those things can cause reflux to be unresponsive to treatment.

As far as alternative treatments we have found some benefit from using probiotics with our refluxers. You can incorporate them by introducing yogurt with live cultures into your son's diet or by using a chewable (which is what we do) or powder form. Ask your doctor if that might be worth trying.

I am going to ask some of the volunteers who have older children to respond to your post. They may have some more ideas that might help. I know some of them have also dealt with food allergies so they might be able to help you determine if that could be an issue as well.

Feel free to e-mail me anytime!

RackleyFive@cox.net

~Jen
May 17, 2008
rissaroo
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!
Oh wow, I'm so sorry that your poor little guy is going through this! I have an 11 yr old son with GERD, and it's really tough when the older kids have it because they suffer mentally from it as well as physically. I think you're right, it doesn't sound like it's anywhere near under control and something needs to change. I hate to say it but I second Jen, diet might be a good place to start. My son gets bad GERD when he eats wheat, and his digestive system also seems to go haywire when he gets cow's milk products. Does your son have any skin problems, like eczema? That would make the possibility that he still is dealing with an allergy higher. Also, dairy can come and go, so if he had problems with it once it's more likely he might be dealing with it again. How long have you been on the higher dose of Prevacid? Sometimes it takes awhile (it took pretty much 8 weeks before we saw stable improvement in Isaiah) so maybe it will be working better soon. For Isaiah, it actually got worse for awhile on Prevacid before he started to improve. If you want to talk to someone, I'd be happy to give you a call. My email addy is anerishale@comcast.net, and if you send me your number and a good time to call I'd love to talk....it's so hard as a parent when your kid is dealing with GERD!
May 17, 2008
massfiasco
thank you!
oh, i appreciate your responses so much. i've looked at this page 47 times since last night. =) i have not been able to connect his symptoms to food, but we have a hard time following a GERD-friendly diet. if i took away tomato products, cheese, chocolate, greasy foods like chicken tenders and fries, buttery things, citrus, strawberries... well, there wouldnt be much left that my son would eat. i try, but i cant eliminate everything, and when i serve a GERD-friendly meal, the spitting up continues anyway. he did have eczema as a baby but it cleared up when i went off dairy. he does drink a lot of milk, so it is possible that the dairy issues have returned... but wouldnt he have other symptoms? i'm used to his infancy, where the allergy manifested itself as green, mucousy poo, lots of gas, and a screaming child.
May 17, 2008
massfiasco
okay, i hate that i cant do paragraphs. so i'm just starting a new post. our doctor is not considering motility drugs (reglan/domperidone if i recall correctly) because the emptying was normal. i'm glad, since i didnt want to deal with the possiblity of hyperactivity side effects of reglan... we deal with a touch of that already. the endoscopies showed completely normal anatomy, so there is no evidence of a cause there. i could try probiotics- we gave him culturelle as an infant (he had c. difficile, this poor child and his stomach have been through the wringer) so we could try that again. though, he does eat a lot of yogurt already. what are the chewables that you use, jen? and with regard to food allergies, is it something that can be tested in the blood, or do they do a regular scratch test? I'm wondering if my pediatrician would be willing to give us a referral for an allergist, or how i find an allergist that might have experience in this area. I'm just outside of boston.
May 17, 2008
massfiasco
one last thing that i wanted to add is that on his most recent endoscopy, our GI doc found some changes to his duodenum that he said he sees in his patients with gluten issues. we have never suspected problems with wheat so i blew it off, but i suppose that's something I should consider now that i'm at the end of my rope, LOL.
May 17, 2008
dljpan
forum monitor
Hi, I am so sorry you are going through this. I hope you find some answers soon. My son suffered with reflux until I took him to an allergist at 2 and found out he was allergic to many of the foods he was consuming on a daily basis. I would definitely try to investigate allergies more. They can test by blood. My son never got hives or eczema. The only symptoms of his allergies at the time were reflux and allergic shiners under his eyes. I encourage you to also post on the beginners board. It gets a lot more traffic and you might get many more ideas.
May 18, 2008
rissaroo
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!
Hi again! Yes, come over to the beginners and infants board. I would love to have some moms with big kids company, and the group there is so very helpful and wonderful. Not only have I gotten tons of great help, but there is always some other thread going on to give me a smile, a laugh, or some ideas not even related to reflux (and sometimes my whole life seems to revolve around reflux, so that's a big relief!). If there is *any* chance that there may be a gluten intolerance or Celiac's, it's well worth investigating. You can have a blood test run that will give you a good idea if it's Celiac's, make sure you get it done by a dr. who knows about it because they are pretty specific tests. If it's not Celiac's, there could still be a wheat/gluten intolerance at work and since that's one of the major allergies or sensitivities it's maybe worth giving it a trial run. Isaiah (my 11 yr old) and I both have Celiac's, and besides the other symptoms it can cause you to become intolerant to other foods...milk being the first to go. There are some weird symptoms that can go with Celiac's....the classic weight loss and diarrhea are only some of them. It can cause: Constipation, reflux, eczema, an itchy blistering rash, ADHD, poor sleep, ataxia, a sort of nerve problem in the hands and feet (buzzy, prickly sometimes painful feeling), anemia, learning disabilitlites, behaviour issues (grouchy, angry child) and the list goes on. Do any of those seem familier? I know that there are tons of other things that can cause symptoms like that, but I'd for sure look into it if it sounds like your son is experiencing any of those. For Isaiah, reflux was what cued us in to the Celiac's...if he gets 'glutened' his first reaction seems to be terrible heartburn. The reflux went away when he went off wheat for several years, but sadly returned this year big time. I'm looking into other food issues for him, because dairy seems to be creating a problem. When the Celiac's was dx'd, Isaiah had only reflux and eczema (which we didn't even connect to the wheat at the time). His attention span and energy level have been much better since going gluten free as well. Ok, I don't know how to make paragraphs yet either (but I'm going to go find out now!) so I'm going to stop for now...but please do come over to the other forum and introduce yourself. Also, please do email if you want...I'm a volunteer for PAGER and would love to give you a call or chat via email. My son has a lot of the same issues you've been dealing with, and we are in the process of trying to figure out what sort of dairy he can or cannot tolerate so it would help me, too!
May 18, 2008
rissaroo
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!

Ok, trying the paragraphs

is this working?

or is my html showing?

May 18, 2008
rissaroo
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!

Woohoo! OK, here's how to do paragraphs: you type in < p > before you start typing the first part of your paragraph. But when you do it, don't put any spaces in yours Then, when you want to start a new paragraph, you type < / p > again without any spaces.

Whoohoo! I love being able to do that! It feels so much more normal.
May 18, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
I am seconding looking into the gluten issue especially with your endoscopy results. Have you thought about doing a trial run on a gluten free diet?
May 18, 2008
massfiasco

I guess I thought that a gluten intolerance/celiac would manifest with more symptoms than this. but really, I have no idea. I have to go do some reading, and I'm going to call our pediatrician tomorrow to ask for food testing.

I will check out the beginner's forum- thanks so much for the suggestion! I am hopeful that we will find some other way to help him. rissaroo, you also listed those other symptoms of gluten intolerance- and we do struggle with my son's activity level as well. We have recently evaluated him for ADHD and he was in the high normal range for excitability... nothing to medicate him for (thank God, I have no interest in adding another med to this mess) but certainly something that we have to keep an eye on. He's doing great in school but is quite distracting in class. Perhaps if we go down this food intolerance road, we'll take care of that problem too. *hope hope hope*

meanwhile, my 7 week old is wincing and screaming when he spits up, and I'm feeling this sense of doom that we may have another case of reflux on our hands. No other symptoms yet, and he's actually a decent sleeper compared to my first (2-3 hour stretches), so I'm not going to do anything... but I'm worried, for sure.
May 19, 2008
rissaroo
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!
Oh, another thought...can he chew gum? I know it's not idea to have your 5 yr old chewing gum, but it really helps Isaiah when he's having a GERD attack. He chews Trident, I think it helps your teeth as well. I've read studies that say that chewing gum has proven positive effects on GERD, probably because you're swallowing much more...maybe you could show him how to chew it responsibly and he could try that until the reflux is better under control? It would help his breath, too.
May 19, 2008
rissaroo
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!
Forgot to add....I *think* I saw the gum article on this site, in the reading room. There are tons of good articles there, if you haven't seen them already.
May 19, 2008
massfiasco
ha, that's funny, i just had the gum idea myself. i bought 3 packs this weekend. better breath, it will clean his teeth of all the stomach acid too. and hey, it can help me lose the baby weight- if i have gum in my mouth, i cant eat so many Tofutti Cuties. LOL. I'll go check out that article!
May 20, 2008
rissaroo
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!
How's the gum working? I was also thinking, how long has he been back on Prevacid? For us, Isaiah got better the first week on, then much worse for about 3 weeks, and then very slowly got a little better every day for another several weeks. He is doing great right now with his GERD, so I guess it really can just take a long time for some people. Also, we broke the dose into two parts...he takes one 15 mg pill when he wakes up, and one right before bed. This seems to help, I think maybe the 30 mg in the morning dose was getting metabolized too quickly or something because he always had a flare-up in the evening and then it was hard to get back under control.
May 21, 2008
massfiasco

I have only given him gum once... It's kind of hard to keep track of his symptoms on school days. He says he's better, but I think he's just making sure he doesn't end up back on the nasty Prilosec.

We used to give him one 15mg pill in the AM, and one before dinner. That isn't working anymore, so now we're trying 2 pills in the AM. We can add another 2 if we need to (before dinner) but I just hate giving him that much medication... but we will if we have to.

I called our GI guy and he says it's OK to do the food allergy testing. I have to call back our Ped and ask him for the referral... but what is better, blood testing or skin testing? The docs seem to disagree- the ped wants to do blood testing but the GI says that skin testing is more reliable and we'll get a bigger panel. Thoughts?
May 21, 2008
rissaroo
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!
From what I am reading, neither one is going to be 100% reliable but the skin test is slightly better...that is, sometimes skin tests will come back positive where blood tests will not. Sometimes they do both, then you can see the levels of reaction to the different allergens in a number (from the blood test) but have the benefit of the skin tests, too. The ladies on the Beginner board have tons on info on this, several have highly allergic kids. I am reading "Understanding and managing your child's food allergies" right now, by Dr. Scott Sicherrer. It has been really helpful...I just checked it out of the library. You might want to read it if you have the time, maybe while you're waiting for the appointment. I feel like I'm better equipped to ask questions etc. now when we go see the doctor. Does he seem any better lately? And sorry that your baby might be starting to reflux too! I sure hope that's not going to be a problem. Two of my 3 kids have had GERD, the youngest so far has been reflux free, although 3 times in the last 2 weeks she has told me that she threw up in her mouth and spit it out in the toilet. Sigh. Hopefully it's a passing thing, but I guess we'll see! BTW, darling picture! He sure is a cute kid.
May 21, 2008
massfiasco

okay, we're scheduled for the skin test. the poor thing, he's probably going to hate it. the GI didnt express any interest in a celiac's test. hmmm. we may have to go back to the ped for that one.

he seems a little better lately, but again it's hard to tell when he's in school most of the day. we will see how he is over the long weekend and go from there.

i'm not sure about the baby yet- my middle one (yes, three boys, 5, 3, and a newborn!) is reflux-free. the baby spits up a reasonable amount, but he seems unhappy when he does it. we'll see, i'm not calling it yet.

thanks for the compliments! he just had a blocked duct removed from his lip, so it's swollen in the picture... but he's cute anyway. =) your three are adorable! your oldest looks like a bad ass in that pic, LOL. something about his stance...
May 22, 2008
maiam
maia m - GERD. Nissen Fundoplication w/hiatal hernia repair.
Mom to
Son (10) GERD(aspiration pneumonias, apnea, tracheomalacia), Food allergy, Asthma
Daughter (6) GERD, Heart Murmur, Food Allergy, Asthma, Mold allergy
Celiac can cause GERD-like symptoms. If you suspect Celiac, I would not go gluten free until you do testing -- they can do a blood test (tTG) but the gold standard for diagnosis is biopsy via scope. The testing (scope or blood) will not be accurate unless he is eating gluten at the time of testing.

My son had what we called "death breath" and that was his only reflux symptom for years. :( He is much better now, on 80mg (!!) of Nexium. We have scoped and ruled out EE, Celiac, etc. We have a horrible family history of severe GERD.

Has anyone discussed with you the timing of meds? Our docs say that the *best* time to give the once a day meds is 30min-1 hour before the dinner meal. Mine are now both on morning and before dinner dosing, and are doing better. They did not do well on "a.m. only" dosing.

I also posted on your babies/toddlers question! :)

Check with your
doctor first!