Reflux + eczema + no weight gain = ???, not sure what path to take

[Harmony96]

I'll keep this short and to the point.

DS is 6.5 months old now. He's had come-and-go-but-never-goes-completely-away eczema since he was about 3 weeks old. I tried eliminating dairy with no results. He has nearly entirely stopped gaining weight, only gaining 2 ounces total between his 4-month and 6-month appointments.

He also likely has reflux. He had been acting in pain for quite a while each evening and when he spit-up, it was sour-smelling and curdled-looking, whether he spit up right after eating or hours later. His dr prescribed Prevacid and that helped both the odor and the consistency of the spit-up, as well as made him a LOT more comfortable.

I took him to a chiropractor today who did a bunch of stuff with him and showed me a massage to keep his stomach down in his abdomen instead of stuck up under his diaphragm. She gave me some probiotics and recommended that I go see a homeopath. She did not recommend an elimination diet, but I think I might try it for a week (after I get back from an out of town trip) to see if there is any noticeable change at all.

I don't know whether to go ahead and at least call the homeopath to see if she can see us before we go out of town (we're leaving on Monday) or wait until after I try the brief elimination diet or just until after I am on the probiotics for a while or put him back on the Prevacid in the meantime too or what (I did skip today's dose with mixed results... spit-up returned to its sour odor and curdles-in-water consistency, but putting him to bed tonight was only slightly fussy).

[sbgrace]

If you have a baby not growing (so headed to or in failure to thrive) with reflux you treat it. If you take him off the prevacid it takes two weeks to fully work again. Babies in pain so severe it affects eating/weight gain have, in my opinion and experience, potential long term effects of that pain on their personality/development/etc. That's what happened to my son. Among other things my son developed a swallowing aversion that didn't completely resolve until he was 3.5, he missed some developmental things in the times when he was in the most pain, he's not the size he would have been had he kept growing at such a vital time, and I honestly think it affected him in terms of feeling like he couldn't trust us to help him when he was hurting but maybe I'm projecting on that. I still want to cry when I think of how it must of have been for him at such a vulnerable age.

I guess, then, my vote is keep the prevacid as you work on trying to find the underlying cause. Because of the weight gain issues you are, in my opinion, not dealing with run of the mill reflux. I think the weight pushes it into severe personally as most reflux babies are going to keep growing. So I'd be aggressive in controlling his pain.

[kjbrown92]

I wouldn't do a TED, but eliminate the more likely causes: dairy, gluten, soy and corn. If you see things start to improve, then you could try weaning off the Prevacid. At least that's what I did with my kids (the two that have food intolerances). Come join us in the Allergy subforum!

[Harmony96]

Originally Posted by sbgrace

If you have a baby not growing (so headed to or in failure to thrive) with reflux you treat it. If you take him off the prevacid it takes two weeks to fully work again.

Really? I noticed a difference in him in just one day, both when he first took it and when I skipped yesterday's dose.

Originally Posted by sbgrace

Babies in pain so severe it affects eating/weight gain have, in my opinion and experience, potential long term effects of that pain on their personality/development/etc. That's what happened to my son. Among other things my son developed a swallowing aversion that didn't completely resolve until he was 3.5, he missed some developmental things in the times when he was in the most pain, he's not the size he would have been had he kept growing at such a vital time, and I honestly think it affected him in terms of feeling like he couldn't trust us to help him when he was hurting but maybe I'm projecting on that. I still want to cry when I think of how it must of have been for him at such a vulnerable age.

I guess, then, my vote is keep the prevacid as you work on trying to find the underlying cause. Because of the weight gain issues you are, in my opinion, not dealing with run of the mill reflux. I think the weight pushes it into severe personally as most reflux babies are going to keep growing. So I'd be aggressive in controlling his pain.

for what you went through w/ your son. While DS was on the Prevacid, he was eating much better on it (nursing for longer and more efficiently and less popping on and off), but he still has not gained any weight yet (on my postal scale that is sensitive to half an ounce), so I don't even know if it *is* reflux that is causing his weight issues.

Originally Posted by kjbrown92

I wouldn't do a TED, but eliminate the more likely causes: dairy, gluten, soy and corn. If you see things start to improve, then you could try weaning off the Prevacid. At least that's what I did with my kids (the two that have food intolerances). Come join us in the Allergy subforum!

See, even just eliminating those four would "feel" like total elimination to me, lol. Maybe I can do them one at a time. Dairy didn't do anything. Gluten is next on the list... *sigh*. I sure do love my sandwiches. The chiro yesterday mentioned that sometimes the items someone is allergic to are items that someone craves, like her DH is allergic to corn but wants chips and salsa all the time. I told her that I crave everything, and she said that is b/c I'm a nursing mom and am hungry all the time.

Anyway thanks for the replies. I am finding them helpful.

[Harmony96]

Originally Posted by Harmony96

See, even just eliminating those four would "feel" like total elimination to me, lol.

Although it wasn't until after I posted that when I saw your site. Very nice!

[sbgrace]

The PPI's take two weeks to fully work. They do, however, neutralize acid immediately. So he had a partial effect immediately but would have full (and more important) effect by two weeks. How long did he do a PPI? I'm wondering if he didn't have long enough to get full relief and so gain weight? It's also highly likely he's not being dosed correctly unless you saw a pediatric GI. Here is a dosing chart to check (he needs three times per day). http://www.marci-kids.com/dosing.html and it has a lot of pediatric reflux information too. At any rate that you saw improved nursing immediately is very telling. If he continues to not gain even though his pain is controlled I would probably see a lactation consultant to look at supply. If he has been nursing like reflux babies sometimes nurse for a time that could affect your supply.

I'm not recommending you not try other things to figure out if you can fix this by the way. I'm just saying with a baby in that much pain you want to keep doing the meds (at effective doses) imo as you look for causes. I just wanted to be clear on that point.

[Bokonon]

How long did you eliminate dairy for, and did you include hidden dairy? It takes 2-3 weeks for dairy proteins to leave your system, and potentially another 2-3 to leave baby's, but you would likely see results before that. IMO you should try that and eliminating soy, and then eliminate more allergens as needed.

[Harmony96]

Originally Posted by sbgrace

The PPI's take two weeks to fully work. They do, however, neutralize acid immediately. So he had a partial effect immediately but would have full (and more important) effect by two weeks. How long did he do a PPI? I'm wondering if he didn't have long enough to get full relief and so gain weight? It's also highly likely he's not being dosed correctly unless you saw a pediatric GI. Here is a dosing chart to check (he needs three times per day). http://www.marci-kids.com/dosing.html and it has a lot of pediatric reflux information too. At any rate that you saw improved nursing immediately is very telling. If he continues to not gain even though his pain is controlled I would probably see a lactation consultant to look at supply. If he has been nursing like reflux babies sometimes nurse for a time that could affect your supply.

I'm not recommending you not try other things to figure out if you can fix this by the way. I'm just saying with a baby in that much pain you want to keep doing the meds (at effective doses) imo as you look for causes. I just wanted to be clear on that point.

I started it a week ago on Thursday, so he's been on it for a week now. I did look at the marci-kids site but it was after he'd already been prescribed. I also mentioned this on another board I'm on, and someone replied to me and their LO did see a GI and was still only prescribed a dose just once/day. There is a lactation consultant (IBCLC) who comes to his pedi's office every Thursday at lunchtime, and our "weigh-in after he's been on it for 2 weeks" appointment is on May 6th, so I'll probably stay afterwards for a visit with her.

Originally Posted by Bokonon

How long did you eliminate dairy for, and did you include hidden dairy? It takes 2-3 weeks for dairy proteins to leave your system, and potentially another 2-3 to leave baby's, but you would likely see results before that. IMO you should try that and eliminating soy, and then eliminate more allergens as needed.

I was off dairy for just over 3 weeks and I did include hidden dairy, like some bread that had milk in it and some "hint of lime" tortilla chips that had sour cream in the flavoring. I'm attempting to be off wheat right now but it's going to be nearly impossible to remain wheat-free when I go out of town next week, but maybe something will show up in these next couple of days. In any case, I can try it again when I come back.

[kjbrown92]

Originally Posted by Harmony96

See, even just eliminating those four would "feel" like total elimination to me, lol. Maybe I can do them one at a time. Dairy didn't do anything. Gluten is next on the list... *sigh*. I sure do love my sandwiches. The chiro yesterday mentioned that sometimes the items someone is allergic to are items that someone craves, like her DH is allergic to corn but wants chips and salsa all the time. I told her that I crave everything, and she said that is b/c I'm a nursing mom and am hungry all the time.

I saw this somewhere, but I don't remember where (or else I'd credit it). But... say you had a whole bunch of rocks in your shoe. And it hurt. When you took one out, did it hurt any less? If you put that rock back in, and took out another one, did it hurt any less? That's what happens if you have more than one food trigger but you only take out one at a time. When I took my DS off gluten, he begged for it for 3 days - just a bite, just a taste, anything, just a crumb. He went into withdrawal. It was so bizarre to me. So yes, you can definitely crave the things that you're intolerant to. And I've been on vacation, and gone out of town, and stayed on the top-4-elimination diet (in fact, when we went to Las Vegas for 5 days last year, it was the first vacation in more than 10 years where I didn't get sick during it).

[balancedmama]

Have you tried egg or soy yet? I really do think this sounds like a food allergy/intolerance (based on my experience with both of my kids).

[Harmony96]

Originally Posted by kjbrown92

I saw this somewhere, but I don't remember where (or else I'd credit it). But... say you had a whole bunch of rocks in your shoe. And it hurt. When you took one out, did it hurt any less? If you put that rock back in, and took out another one, did it hurt any less? That's what happens if you have more than one food trigger but you only take out one at a time. When I took my DS off gluten, he begged for it for 3 days - just a bite, just a taste, anything, just a crumb. He went into withdrawal. It was so bizarre to me. So yes, you can definitely crave the things that you're intolerant to. And I've been on vacation, and gone out of town, and stayed on the top-4-elimination diet (in fact, when we went to Las Vegas for 5 days last year, it was the first vacation in more than 10 years where I didn't get sick during it).

Hm, the rocks thing make sense, the way you put it. The out of town that I'm doing next week is going to my parents' house, and I don't want to stress my mom out by bringing a big list of dietary needs when I'm not even sure how to do it myself. I would pretty much have to change everything, including where I shop, b/c some of the ingredients in the recipes I'm seeing are just not something I can find at my local store.

Originally Posted by balancedmama

Have you tried egg or soy yet? I really do think this sounds like a food allergy/intolerance (based on my experience with both of my kids).

I tried egg, briefly, while at the end of trying dairy. It probably wasn't for long enough. I have not tried soy.

[Harmony96]

I just get so discouraged when I hear that it can be (and likely is) a food allergy/intolerance, because I really feel like I'd starve or not be able to stick with it or something. It's kind of like a catch-22 thing b/c I don't have the time or money for the *right* kind of foods. I work from home, so I could increase my schedule and partially take care of the money factor, but then that would be detrimental to time. But if I make sure I have plenty of time, then I would be unable to have the money to do it.

I feel like instead of just making 3 meals a day, I'd be making 6 - three unrestricted meals that DH and DD could eat, and three other ones that are OK for me to eat. I barely have the time to throw together a sandwich for lunch and if I do elimination, how would I have time for anything but cooking and prepping food all day long? DD is too little to be of any help.

Plus, then even if I DO eliminate everything, how do I find out which foods are the offending ones without it being a several-months-long process? I've seen that it takes several weeks to get the foods out of my system and his, but then if I add a food back in and he reacts to it, wouldn't I be starting over and have to do another several weeks? He would be a year old before I could even think about being done and knowing what he needs or doesn't need. I feel like I'd miss out on HIM and who he is and what fun new things he's learning, while I'm stressing about what he can or can't eat.

[Bokonon]

It doesn't have to be that difficult or expensive. It's more about eating whole foods, like making a meal of chicken with herbs and spices, and vegetables, instead of something with a heavy sauce, or a packaged dinner.

I even made a dairy- and soy-free Thanksgiving meal and no one noticed the difference.

And I say this as gently as possible - what is the alternative? Your son is in pain and not growing. You won't have to eat a different diet forever. But IMO, it's worth the inconvenience to at least try to figure out what the problem is before there is irreversible damage.

[kjbrown92]

Believe me, I don't make that many meals. My DH and DD1 are unrestricted. I don't make them a special meal except on pizza days (and I buy their dough - shhh, don't tell). Otherwise, they eat the same "restricted" things we eat. While you're figuring things out, you don't have to buy all the special ingredients. Go the whole foods route.

Steak, baked sweet potato, veggie (like asparagus, broccoli, or cauliflower)
roast a chicken, rice, veggie
baked salmon, roasted potatoes with some herbs on it, veggie
rice noodles (special food, yes), meatsauce, veggie
etc.

Breakfast:
Cream of rice
Hot Buckwheat cereal (easily microwaved)
bacon, sausage
buckwheat waffles/pancakes (make a big batch on the weekend and then freeze leftovers, toast to reheat)
Rice Chex with rice milk
grapefruit or other fruit

Lunch: leftover dinners

I do all the "treat" type things because we've been on this restricted diet for 2 years, and we need a treat once in a while.

[Harmony96]

Originally Posted by Bokonon

And I say this as gently as possible - what is the alternative? Your son is in pain and not growing. You won't have to eat a different diet forever. But IMO, it's worth the inconvenience to at least try to figure out what the problem is before there is irreversible damage.

I know, and I really feel like a terrible mom when I think of not doing it. He's such a happy, social, laid-back baby. He doesn't act like he's in pain. But what if the pain is all he's known and so that's why he's happy? And then I think I might have jinxed myself by saying that the Prevacid is helping him nurse better, b/c he didn't nurse very well at all today.

I caught up the checkbook today and we have enough extra left from our tax refund for a visit to the homeopath, so I'll call her when I get back into town. But everything's on hold until then.

(also stashing a link here so I can find it later)

[nicole_marie]

Originally Posted by Harmony96

Plus, then even if I DO eliminate everything, how do I find out which foods are the offending ones without it being a several-months-long process? I've seen that it takes several weeks to get the foods out of my system and his, but then if I add a food back in and he reacts to it, wouldn't I be starting over and have to do another several weeks? He would be a year old before I could even think about being done and knowing what he needs or doesn't need. I feel like I'd miss out on HIM and who he is and what fun new things he's learning, while I'm stressing about what he can or can't eat.

Absolutely! I totally understand where you are coming from. I lost the first year of my son's life worrying about allergies and elimination and made very little (if any) progress. My philosophy is to eat a very clean, immune boosting diet of mostly fresh, raw fruits and vegetables while Eliminating the common allergens (peanuts, egg whites, dairy, soy...and gluten if you can). If you boost your immune system (and your child's), you body should begin to tolerate the lower "food sensitivities". We try to eat fresh/raw until the evening. Then we cook affordable soups in the evening. Lentils, black beans & root vegetables make very affordable evening meals. Stress can be just as detrimental to a child as food intolerances and you are right not to ignore that.

Eczema tends to wax and wane for us, regardless of food. It will flare up when my son is teething...when the weather gets hot...when it's really dry in the winter...when he gets a cold or other illness...when we visit friends that use Tide...when he is crawling on carpet at someones house (especially if it was recently shampooed)...when someone holds him that uses fabric softener. Often I would think...oh shoot...we just introduced watermelon, he must be sensitive! Only to figure out that...well...it could have been the lady at playgroup that held him...or...well, the humidity changed drastically in the last couple of days...etc. If you are going to journal, you need to consider a million factors besides food.

[sbgrace]

Originally Posted by Harmony96

I started it a week ago on Thursday, so he's been on it for a week now. I did look at the marci-kids site but it was after he'd already been prescribed. I also mentioned this on another board I'm on, and someone replied to me and their LO did see a GI and was still only prescribed a dose just once/day. There is a lactation consultant (IBCLC) who comes to his pedi's office every Thursday at lunchtime, and our "weigh-in after he's been on it for 2 weeks" appointment is on May 6th, so I'll probably stay afterwards for a visit with her.



I was off dairy for just over 3 weeks and I did include hidden dairy, like some bread that had milk in it and some "hint of lime" tortilla chips that had sour cream in the flavoring. I'm attempting to be off wheat right now but it's going to be nearly impossible to remain wheat-free when I go out of town next week, but maybe something will show up in these next couple of days. In any case, I can try it again when I come back.

If a pediatric GI prescribed a PPI once per day (which is wayyy worse than nothing as the baby will have major rebound acid) I am flabbergasted to put it mildly. That just isn't done at all. I wonder if they saw an adult GI. I hope your son isn't dosed once per day is he? There is plenty of research about how this stuff works. Once per day is worse than nothing.

[mum4boys]

Originally Posted by sbgrace

If a pediatric GI prescribed a PPI once per day (which is wayyy worse than nothing as the baby will have major rebound acid) I am flabbergasted to put it mildly. That just isn't done at all. I wonder if they saw an adult GI. I hope your son isn't dosed once per day is he? There is plenty of research about how this stuff works. Once per day is worse than nothing.

I am not shocked if it was a pediatric G.I. doctor. We have had our share of ped G.I. doctors that do not have a clue.

Another thing you need to think about with a PPI as your baby grows you need to keep up on the dosage and up it accordingly. Also now there is good research that shows once diagnosed with acid reflux as a baby more then likely to continue on into adulthood. I use to think as long as my kids were not showing symptoms of reflux we were fine. How wrong was I when I almost died from stupid reflux a little over a year ago. I was causing long term damage to my kids and myself by not treating it continuously.

[Harmony96]

Originally Posted by nicole_marie

Stress can be just as detrimental to a child as food intolerances and you are right not to ignore that.

I think this thread is starting to stress me out, lol.

Originally Posted by nicole_marie

Eczema tends to wax and wane for us, regardless of food. It will flare up when my son is teething...when the weather gets hot...when it's really dry in the winter...when he gets a cold or other illness...when we visit friends that use Tide...when he is crawling on carpet at someones house (especially if it was recently shampooed)...when someone holds him that uses fabric softener. Often I would think...oh shoot...we just introduced watermelon, he must be sensitive! Only to figure out that...well...it could have been the lady at playgroup that held him...or...well, the humidity changed drastically in the last couple of days...etc. If you are going to journal, you need to consider a million factors besides food.

See, that's why I hesitate to jump straight to food. It could be ANYTHING. And even just within food, it could still be anything. It could be yeast. It could be bacterial. It could be multiple food sensitivities. I have no idea. I did notice that for about 10 minutes today... only TEN minutes... that the left side of his face was angry red, and then it suddenly went away. So who knows.

Originally Posted by sbgrace

If a pediatric GI prescribed a PPI once per day (which is wayyy worse than nothing as the baby will have major rebound acid) I am flabbergasted to put it mildly. That just isn't done at all. I wonder if they saw an adult GI. I hope your son isn't dosed once per day is he? There is plenty of research about how this stuff works. Once per day is worse than nothing.

She is military so it's likely an adult GI, but I did send her a message to ask her. DS is dosed once/day.

~~~

This thread has turned more depressive than helpful and I'm so stressed now that I feel like I'm going to worry myself sick and then not be able to care for either DS or DD. I'm trying to think of the good things that I do for him, but now they're just being overshadowed by the ways that I'm apparently hurting them. I am going to continue the single daily dose (b/c I'm either blind or there's not "plenty" enough research out there for the bad moms like me to find). I am going to eat my normal diet while I'm gone. I am going to continue taking the probiotics. I am going to call the homeopath when I get back.

And I am going to try really hard to not let this thread depress me further.

[Bokonon]

Try not to get too overwhelmed or depressed about it. Like everything else, take it one step at a time. An elimination diet does not have to be stressful or all-consuming. It does take a little bit of planning, but you are not alone! There are many of us who have BTDT and can help you and support you along the way!