I'm so confused and discouraged

[Mosaic]

I just don't know what's up with DD2, nor where to begin. The short story is that after a history of feeding issues and months of therapy, my daughter HATES eating solid food, so now the theory is that there is something else (allergy/intolerance?) going on.

The longer version:
We've had feeding issues with DD since day 1. Posterior tongue-tie clipped at ~2 weeks, then feeding therapy with for 2.5 months due to a shallow latch, middle tongue hypersensitivity, and crazy reflux. I eliminated dairy and the reflux got WAY better, so we never tried meds. She never got totally over her latch issues, but she did improve and transferred well so she's EBF.

At 6.5 months, we tried rice cereal, which resulted in profuse vomiting and weird sleepy "out-of-it" behavior that freaked us out. After that we tried tastes of banana, sweet potato, and applesauce, none of which got that scary reaction but she was just NOT into food at all, getting very upset at feeding attempts, so I didn't push it. We did try rice cereal one more time and got projectile vomiting ~2.5 hours later, so never again!

At 9 months 1 week, she weighed 16lb8oz and was below the chart for height (I think 24.8in), and the ped said I needed to work on solid foods. We went back to the SLP for a feeding evaluation and a modified barium swallow study which confirmed oral and pharyngeal phase dysphagia (I can give more details if needed). 2.5 months of therapy later, she still cries more than any other infant they've ever seen in their office, so they're suspecting an allergy, intolerance, gluten-sensitivity, esophagitis something?

They want to start reflux meds to see if that helps; but if there's a food intolerance (like the dairy), will the reflux meds just mask the issue? Since she had such a reaction to rice, should I cut rice out of my diet since we're still BFing? If I think she might have a sensitivity to soy, should I eliminate that, too? If I do this at the same time as the reflux meds, will we know what the culprit was? Will MY elimination diet really help HER solid foods experience?

FWIW, I don't think she has any typical allergy signs: her skin is pretty clear except for the drool zone, her diapers have been pretty much normal I think. But she's been irritable during nursing sessions, arching back, still waking every 2 hours overnight. And then solid food attempts are a bust. As for food, she'll scoop it up off the table and suck her fingers, but she cries and screams the whole time. Like she wants to eat it or she likes the taste so she's almost desperately shoving it in there WHILE screaming and getting so upset... now I'm going to cry. I'll be surprised if she passes 17 lbs by her 1 yr appt.

While I'm at it, I need suggestions on crunchy foods for her therapy: they recommend mum-mums and graham crackers but we need something rice and (I think) soy-free.

[scsigrl]

Originally Posted by Mosaic 

At 6.5 months, we tried rice cereal, which resulted in profuse vomiting and weird sleepy "out-of-it" behavior that freaked us out.

So out of everything I read, this is the one thing I will comment specifically on.  That kind of reaction sounds like a typical FPIES reaction.  It is a food protein intolerance that can be to many many foods that isn't specifically an allergy.  (My son has it to bananas and blueberries.  He has/will test - to an allergy test but has this crazy kind of reaction after eating it with the vomit and crash thing.  VERY scary!)

Are you working with an allergist?  If you are thinking these aren't "just" GI issues I would make that the next step.  Keeping in mind that allergy testing (blood and skin both) are only about 50/50 for accuracy on a + (90%+ accuracy for a - test though).  

[kjbrown92]

What kind of rice cereal was it? Were there any other ingredients in it? I know they say first foods, but I think it was Gerber that had soy in theirs when I was starting solids with DS, 10 years ago. If it was just plain rice, then yes, I'd take rice out of your diet too. If she has had a problem since day 1, then she's probably reacting to food in your diet.

Personally, if I were going to do an elimination diet, I would hold off on the reflux meds to see if a food is the culprit (top contenders are dairy, gluten, soy, and corn for intolerances, everyone seems to know the top 8 allergens). Because, yes, the reflux meds usually mask it.

If she's waking up 2 hours every night and arching her back and miserable, I'd say those are typical signs of food intolerance. Maybe not food allergies though. My DS had great poop but he had horrible intolerances (milk and soy at the beginning).

[Mosaic]

Thanks to you both for attempting to figure this out with me!

Originally Posted by scsigrl 

So out of everything I read, this is the one thing I will comment specifically on.  That kind of reaction sounds like a typical FPIES reaction.  It is a food protein intolerance that can be to many many foods that isn't specifically an allergy.  (My son has it to bananas and blueberries.  He has/will test - to an allergy test but has this crazy kind of reaction after eating it with the vomit and crash thing.  VERY scary!)

Are you working with an allergist?  If you are thinking these aren't "just" GI issues I would make that the next step.  Keeping in mind that allergy testing (blood and skin both) are only about 50/50 for accuracy on a + (90%+ accuracy for a - test though).  

I wondered about that as well, after reading about that here on MDC. If it's FPIES and allergy tests don't pick it up, is there any way to figure out what the offending foods are, outside of the scary reaction? Regardless, this is a pretty strong sign that we should keep avoiding any rice, right? SO much of the baby food has rice in it, and my cuisinart doesn't get the lumps out of my homemade food enough for her therapy at this stage.

My ped mentioned seeing an allergist as a future but also acknowledged "it's not that helpful" and would only be worth testing things we're highly suspicious of causing problems. FWIW, DH and I both have tons of environmental allergies but no food allergies (though I have problems with cinnamon and my first DD had issues with oranges until after she turned 4).

Originally Posted by kjbrown92 

What kind of rice cereal was it? Were there any other ingredients in it? I know they say first foods, but I think it was Gerber that had soy in theirs when I was starting solids with DS, 10 years ago. If it was just plain rice, then yes, I'd take rice out of your diet too. If she has had a problem since day 1, then she's probably reacting to food in your diet.

Personally, if I were going to do an elimination diet, I would hold off on the reflux meds to see if a food is the culprit (top contenders are dairy, gluten, soy, and corn for intolerances, everyone seems to know the top 8 allergens). Because, yes, the reflux meds usually mask it.

If she's waking up 2 hours every night and arching her back and miserable, I'd say those are typical signs of food intolerance. Maybe not food allergies though. My DS had great poop but he had horrible intolerances (milk and soy at the beginning).

You're right on: it was Gerber, which does have soy lecithin, soybean oil, etc.. FWIW, I also tried the Gerber oatmeal once (which also has soy), and that resulted in some spit-up and runny dipes, but not the crazy half-asleep vomiting we saw with the rice. I'm guessing that means I should also give up my newfound appreciation of tofu?

[scsigrl]

FPIES is a "syndrome" which in my medical world is equal to "There isn't a test we can do but we know it isn't XYZ." kind of thing :(  There was ONE study about doing topical patch testing but again, it was only one study and it wan't a very big one at all.  When we explained the reaction to our newest allergist and the fact that he tested negative to the RAST of banana, he was comfortable labeling it FPIES.  It is much like an intolerance in that the "testing" is even more limited over allergy testing.  I would take out rice for a while and maybe trial it later.

Having been down this road twice now, I myself start with dairy, egg and soy if I am seeing issues with a baby.  I work my way down from there till we get to a good place if those three dont' work!  Again, that's me :)

Immunology is awesome, isn't it?

If a parent has any allergy, environmental OR food, the kid has a 50/50 chance of having allergies to either.  So because you and DH had allergies even though environmental it was 50/50 for your kids.  Just because you are E doesn't mean the kids would only be E.

[kjbrown92]

Originally Posted by scsigrl 
If a parent has any allergy, environmental OR food, the kid has a 50/50 chance of having allergies to either.  So because you and DH had allergies even though environmental it was 50/50 for your kids.  Just because you are E doesn't mean the kids would only be E.

Our GI doctor said that if one parent has allergies (any, including environmental) the kids have a 50/50 chance of having any kind of allergy (includes environmental, food allergy or food intolerance). If BOTH parents have allergies, it's up to 70% chance of having allergies/intolerances. And it's just a tendency toward allergies, not the specific allergy.

And I think many people misuse the food PROTEIN designation (mostly doctors, and thus pass it on to the general public). My DS was diagnosed with MSPI (milk-soy protein intolerance). In no way, was it only the food protein. He reaction to soybean oil, soy lecithin, whey, lactose, etc. And I think that's more common than only the food protein (which is what an allergy usually is).
 

[Mosaic]

This is both fascinating and, I'll admit it, a little depressing, too. But it's better to know what we're dealing with. Is FPIES something that you grow out of eventually, or no such luck?

Originally Posted by kjbrown92 

And I think many people misuse the food PROTEIN designation (mostly doctors, and thus pass it on to the general public). My DS was diagnosed with MSPI (milk-soy protein intolerance). In no way, was it only the food protein. He reaction to soybean oil, soy lecithin, whey, lactose, etc. And I think that's more common than only the food protein (which is what an allergy usually is).
 

Hmm... that's interesting. Do you know anything about how these things are broken down and present in breastmilk? I know that the protein somehow gets into milk, which may be why doctors talk about proteins so much. Is there any resource that discusses what crosses into breastmilk?

Regardless, it sounds like the best bet is to go after hidden dairy, soy, etc. as well. I had previously not worried about it because she never had blood in her stools, eczema, etc., so I took that to mean that many she wasn't that sensitive. Was that the wrong assumption?

Also, I forgot to mention she's consistently congested and has a runny nose (but she's in daycare, too, so I didn't connect the dots).

[scsigrl]

Good news is that FPIES IS usually outgrown by age 3 (though rice and oat FPIES seems to take longer to outgrow)!  It is very much like an allergy but its timing and how it happens is different. (IgE allergy "typically" happens faster but both can lead to shock.)

Kids with Food Allergies has a great info section on FPIES and a chat room for parents of kids with FPIES.