Please help! Any info would be so greatly appreciated! My 3 year screams in pain around the...

[mommyforfour]

Hi - I have never tried posting before, but I am truly desperate.  My 3 year old has suffered for so long, and no one seems to have any answers.  I just thought this might bring in some new ideas!  She was diagnosed with "reflux" at two months old.  We tried all the different medications - none of them actually resolving the symptoms - screaming until she was out of breath around the clock unless she was upright or held, pulling off while eating, coughing.  By six months, she was on the maximum dose of Prevacid for a 12 year old.  This seemed to help.  At 18 months, they told us to wean her off the Prevacid as most reflux resolves itself by this age.  Over the next few weeks, we were back to screaming around the clock, not wanting to eat anything, holding her stomach.  At 2, they tried several new medications, but ended up putting her back on the Prevacid.  Again, it seemed to work for a time and then the symptoms were back even on the medication.  She just turned three, and they have her on Prevacid, Zantac, and Hioscamine drops.  They recommended Gaviscon, but it made her vomit.  We are in the first week of removing all dairy from her diet.  It seems like it is only getting worse.  The times that she screams are lasting longer and getting closer together.  She lays on the ground holding her stomach and cries and cries. It happens during the day and at night.  She had an upper GI and a slew of blood work - all normal.  No other symptoms.  ANY thoughts?  Thank you! 

[4myfinn]

I would try a total elimination diet to give her relief asap  Maybe you could take out the major culprits and add them back in one at a time.  Dr. Sears' website has good info on how to go about it.  My son had reflux, and still has issue with dairy, eggs, soy, wheat, and all grains (well, we've only tried quinoa, oats, rice, and buckwheat, but they were all a disaster).  Controlling my son's diet has been extremely helpful.

Here's the link to Dr. Sears' page.  This is a diet recommended for nursing mothers, but perhaps you could do something similar with your 3 year old.  http://www.askdrsears.com/html/4/t041200.asp

Good luck, mama!

[sbgrace]

Ok. First, you aren't supposed to use PPI's (that's the prilosec) together with H2 blockers (that's the zantac).Marcikids site had (has..) lots of excellent information about that but, unfortunately, the site is down for maintenance so I can't link the information. They counteract each other unless they are dosed apart (say PPI in morning, H2 in evening)...but you wouldn't do that as you'd be dealing with rebound from the PPI with only the weaker H2 to deal with it. If you take them together they counteract and that's really bad. So I can't imagine why you're on zyrtec at all.

She may not be dosed adequately even yet. My son wasn't. She still fits the age range for needing 3'xs a day dosing. See this dose chart--check PPI (prevacid) dosing both in amount and number of times per day. http://www.infantreflux.org/forum/printer_friendly_posts.asp?TID=2668

Zegerid was a life saver for my son. It's not effected by food in the stomach so you don't have to wait so many hours before after eating for it to work properly--I think that's a big part of why it helped him so much.

Is she being seen by a pediatric GI? This is something I think you need at this point if not. If her symptoms are controlled by adequately dosed PPI's it's likely reflux. If it's not you might need to think about things like EGID disease and they can't accurately test for that if you remove problem foods (learned that the hard way here) first. Is that what they scoped for in the upper GI? If she's seeing GI and they still aren't adequately dosing her (chart above) I don't know what I would do! It doesn't sound like she's being dosed correctly to me from what you wrote. I'd want a 3x's per day dose of a PPI at max dose (preferably Zegerid). Unfortunately, the Marci kids site is down as what I did was bring all that information to my doctor.

I'm sorry she's hurting so much.

[DevaMajka]

If her pain got worse from taking dairy out, it might be because you increased something else- likely soy. I'd probably want to try removing the top 8 allergens (dairy, wheat, soy, eggs, nuts, peanuts, fish, and shellfish) and maybe the top intolerances (corn, gluten, and maybe something else I'm forgetting), from her diet and see what happens.

I know it sounds like a lot of work, and it would be hard with a 3yo, but you could see changes pretty fast if the problem is a particular food. At least then you'd have an idea which direction to go.

[rhesp1212]

I think the majority of the time reflux is related to food intolerance or allergies. However, it concerns me that she's holding her stomach in pain....reflux wouldn't cause stomach pain. the pain would be higher up like heartburn. The fact that her stomach is hurting would make me definitely think it's a food issue. If your daughter is sensative to dairy, get her off prevacid (if it's solutabs) as it has a dairy derivitive in it that could actually be increasing the problem rather than helping it.

I agree with everyone above, I would start eliminating groups of foods to see if you can figure out something to help her feel better....poor thing!! I would also consider doing IgE allergy testing on her as well as IgG testing (tests for intolerances).That would be some valuable information in getting you started on eliminating problematic foods. In the meantime, I would eliminate the top allergens and intolerances and see what happens. You may also want to consider testing for things like celiacs. Does she also have any bowel problems....loose stools, frequent gas, etc.?