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Advice/encouragement please - failure to thrive, ng tubes, etc

post #1 of 12
Thread Starter 
My dd just turned one and has had a rough road over the past several months. I'm going to stick to the facts so I don't ramble on and get all emotional.

She has been hospitalized a few times for food related reactions - not true allergies - but something similar to MSPI - it's called FPIES (food protein intolerance enterocolitis syndrome) - she has very severe reactions when she eats an offending food, goes into shock and requires IV fluids to recover (basically just vomits so bad she gets incredibly dehydrated, turns gray and falls asleep and her body goes into shock). We did scratch and patch testing - nothing came up on the skin scratch (IgG), but the patch test (more long-term reactions or intolerances) revealed severe reactions for squash, sweet potato, and positive also for dairy and peanut. We were advised to hold of on all grains and soy as well as they are frequent triggers for FPIES.

Anyway, in what I think is a somewhat unrelated, she is small - her weight fluctuates between off the charts low - 4%. She doesn't have much appetite, but nurses pretty well (I have a strong let-down - but she sometimes just sits there and waits until the milk pours out!) and is supposed to receive at least around 12 oz of Elecare (elemental formula) daily through her tube (she won't drink from a cup, and wouldn't drink this stuff anyway! SO gross!). The problem is that she does not tolerate the feedings well at all - I have discussed all this with her GI doc and they say it's because kids sometimes have an adjustment period, but she still has issues. I have to lengthen the feedings to a rate of 7 oz per hour or she will vomit everything up. I can give breastmilk quickly through the tube though, and try whenever I can, but I can't make enough/pump enough.

I'm going to put her tube back in today (I took it out a week ago because I got so frustrated, but she is not gaining at all now - maybe even lost a couple ounces). She's meeting all of her milestones really well and is a happy girl - rarely sick, although blood tests do reveal a low blood level of IgA for some reason - we don't know why.

I've considered trying goat's milk and slowly adding the other ingredients that would make up something like the weston price formula, but because she can't have dairy, I am so afraid of trying it - do people who have milk/soy protein intolerance typically tolerate goat milk? I think what she has is very similar to that, only it also includes other foods.

We're working on 'eating' and drinking from a cup - slow progress.

I'm going to eliminate dairy, soy an gluten from my diet.

Any recommendations for a good infant multivitamin drop? One reason the docs really want a certain quantity of formula is for the vitamin content.

What about a brand of probiotics that people use for their very allergic infant?

Sorry for all the questions - I am just done with this - with the way things have been going. I don't even know exactly what I hope to find out from all of you - maybe just encouragement or ideas - anybody who has been through something similar?

Thanks for your help!
post #2 of 12
I can't help with any of your questions, just couldn't read and not give
I really hope someone has some good advice for you!!
post #3 of 12
hugs to you mama! i can't speak to all of your questions and concerns but I finally found a probiotic that my very sensitive ds can tolerate. we are sticking with it even though it is pricey because we have tried sooo many and he has reacted so many times. we use the pharmax brand probiotics from rockwellnutrition.com. specifically we use the hlc mindlinx capsules. i open them and give him some. currently he is taking a bit more than half a capsule. we tried the hlc intensive and he reacted to the fos in it. the mindlinx powder also has fos (if i remember correctly) which is why we chose the capsules. it is a bit of a hassle to open them and also kind of a guessing game with dosing but he is doing really well now.
post #4 of 12
I would take out anything she's reacted to out of your diet, including the squash and sweet potatoes. ALCAT is another intolerance test, not specifcally IgG, that measures the inflammatory response to food. It sounds so hard for you!! Corn came up negative on every test for my DD2, and it's one of her worst intolerances. Is elecare corn? Because it's one of the top intolerances.

My kids have milk intolerance, also tested positive to goats and sheeps milk. And I tried water buffalo milk with them and they also reacted. Some can tolerate it, and some can't unfortunately.

I don't have any words of wisdom, but you sound like you're trying so hard!
post #5 of 12

Failure to thrive from damage/malabsorption/etc. is part of FPIES in my understanding. So I think her size is very likely related to this.

Try posting in special needs about the tube. I think NG tubes often have issues like you're describing and best as just temporary stop gaps. I would post there for advice on it.
It sounds like she needs the formula. The IGA needs investigated. I'm not sure if it relates to the FPIES. If it doesn't it can be treated (and should) but sorting out if there is interplay is important. Special needs parents will likely have input on this stuff that will help you. But I know of tube knowledgeable parents and IGA knowledgeable parents and not many of both. I believe I've seen FPIES but I frequent other boards too for my son's issues and may have seen it there instead. Anyway, I'd title it NG tube help, FPIES, Low IGA or something like that so parents in any of those camps will respond. Most special needs parents read many of the threads so "help please multiple issues" might work too. You could also just make a separate thread for the NG tube issue and another for the FPIES and one for low IGA (so three threads).

You will find other parents dealing with FPIES on this board as well as tube feeding parents. http://www.kidswithfoodallergies.org/community.html I strongly suggest you join so you can get help from those w/experience.

This board will also be really helpful for tube feeding information. http://www.parent-2-parent.com/forum/ I know there is at least one kiddo who had FPIES on there. I've got to ask--did they rule out eosiniphilic disorders with scope? She does sound like FPIES (I think what you describe is what usually happens with the shock and dehydration) but I think they really do have to eliminate all else for diagnose so hopefully they did that.

I would not try goat milk formula with her. Most dairy allergic kids don't tolerate goat milk and she's beyond allergic. I think any protein in that class is likely going to be dangerous for her. Sometimes those medical formulas are life saving/life preserving/necessary and this is, likely, one of those times. You aren't the first parent on these boards to find they had to have that formula. More commonly it's for EOS disorders but many kids on the mothering boards have thrived on them. I'd let go of that if I were in your place and do all I could to figure out the best approach to the tube, FPIES, and what that low IGA might mean (is it related to FPIES and if so how, should it be treated, etc.). I've heard of EOS parents who drank the formula themselves to make their milk safe. It's been awhile and I don't know how they did it but that's a thought if the other eliminations you're doing don't work--actually, she is tolerating your milk, right, you just don't have enough? (side note: in kids with these types of issues they often aren't nursing enough to stimulate enough milk supply so it's not unusual for you to be struggling to pump enough. )

post #6 of 12
Thread Starter 
Thank you everybody!

I think I will try posting in special needs - thanks for the suggestion - I hadn't even thought of that! duh.... it would be great to be in touch with some mothers who have dealt with the ng tube.

As far as the milk - I actually *think* I have enough, but I'm not sure. I still wake in the middle of the night sometimes with a drenched shirt... but I also think that she is not all that keen on nursing sometimes - well - she LOVES to nurse, just I don't think she sucks enough sometimes. She just waits for a let-down, and then she's happy. I do both sides per feeding.

I have never been able to pump much - even with my other kids - and my other daughter was bf'd until she was 6 months and was HUGE and I couldn't even pump well with her.

I will start the formula up again - it's just so frustrating because she can't tolerate much of it before she vomits. It's not like the other vomiting sessions with the FPIES - she'll just vomit (it's usually at the 3 ounce point) a few times, cry and be done with it.

the formula does have corn syrup solids as the carb source - from what the doctor tells me though, this is THE most non-allergenic formula you can get - is it some form of corn derivative that does not make people react or something? From what I understand, it's much different from regular corn syrup - this actually contains NO fructose at all - we had to confirm that due to suspicions of a rare fructose metabolism disorder, which we now know she doesn't have, thank God!

As far as I know, eosinophilic disorders were not ruled out. We have yet to scope her, but it's been discussed as something we may try in the future to try and get answers for how the low IgA may be related as well.
post #7 of 12
Hi there,

My son has a lot of food allergies, and has been tolerating this multivitamin.


When you buy from Rockwell Nutrition, you can request a free follow-up from a nutritionist. I received the follow-up, and the woman was extremely helpful. I told her what our issues were and she made recommendations for us. The multivitamin is the only one that we've introduced yet. We are doing a 4-day introduction for any new food, so it's slow going. But my son and I are both taking this now.

I have also been looking into elemental formulas to supplement my son's nutrition, but he's gaining right now, so my doctor recommended against it for him because he has a corn allergy.

We had him tested for goat's milk, and he did have the same level of IGE to it as to cow's milk.

Definitely check out kidswithfoodallergies.org, it's a great site!
post #8 of 12

I read your post and I got vivid memories of my DD at age one around when we started seeing the GI dr. She never got the diagnosis that your DD got (we did not follow up with the GI bc. it really was not helpful, read below), but the symptoms are similar to your DD's: eating very little, vomiting, her body temperature would drop during the night, profuse sweating, oh, I can go on...

I kind of took things in my own hands when the dr. kept insisting that she is not eating bc. I was nursing her too often and I did not give her a schedule for eating . They did, however, confirm that she probably has some allergies, which I suspected, but three pedi that we saw said no, bc. she does not have visible blood in her stool. So, after being in hospital for a week and being scared with the tube if I don't get her to eat enough, I went home and took the milk and soy out of both our diets, exactly as instructed by the drs. At the same time, I found this forum and somebody was talking about the Enterolab stool tests which I ordered. It turned out she was allergic/intolerant to a lot more stuff. After I took the stuff out, I saw a huge improvement. Two years later: this past month we found out through the OAT urine test done at the Great Plains Laboratory) that she has dysbiosis (bad bacteria overcomes the good bacteria in the gut), yeast problems, and very bad issues with oxalates, so we have now a whole list of supplements that we are working with.

IMO (and I am not a doctor!) the formula is not a good path to follow. If she needs the supplements/vitamins get them at brainchilds.com; they are very easy absorb. Key, however, are the probiotics (which I found out we were not giving nearly enough to my DD since the OAT results recommended about 50-60 billions of Culturelle and Sacchareu??s; we were giving her about 1 billion...). For you I suggest to take the offending foods out, take also a good multivitamin, and good probiotics. The formula is in my mind a ``survival" game, but not a long term solution for thriving. I was so upset about my DD not gaining weight, but after taking the offending foods out, she maintained around 5%, she did not drop, I think that in fact she is climbing towards 10%. Her behavior and different body pains told me that she is still not well, but with the OAT results I feel like I can better see the beast in the dark (the yeast!) and I just need enough strength and wisdom to fight it. Also, digestive enzymes should help digest what she is eating, I think they really help if you give her in the right dosage (we were also giving her less than 1/4 of what she needed )

I think this forum has a lot of info, probably almost all that you need. The huge part is, of course, your intuition which I think works great!

Lots of hugs and healing to you!
post #9 of 12
have you tried a medical grade pump? When DS was born with a broken collarbone, and wouldn't nurse on my left, I rented a pump, and it made a huge difference in what I was able to pump, from the one that I'd had with my first child.

Also has she been looked at for a tongue tie (that can affect feeding)?
post #10 of 12
Originally Posted by dulce_mami View Post

I read your post and I got vivid memories of my DD at age one around when we started seeing the GI dr. She never got the diagnosis that your DD got (we did not follow up with the GI bc. it really was not helpful, read below), but the symptoms are similar to your DD's: eating very little, vomiting, her body temperature would drop during the night, profuse sweating, oh, I can go on...
Not the same thing as vomit to the point of dehydration and hospitalized for shock (this is life threatening...)
Not the same as FPIES.
post #11 of 12
Thread Starter 
Thank you again everyone!

I am so excited to have found the kidswithfoodallergies.com site! I can't believe there are FPIES parents on there!!! Thank you!

Also - dulce_mama - it may not be FPIES, what your lo went through, but I have to tell you that your description also rang some bells for me - I'm not sure if her FTT is related to the FPIES or not - could be seperate issues, maybe not. But especially the sweating thing - so weird!

I'm also planning on doing some extensive testing - probably with Great Plains Labs as well - there are so many though! which ones do you all think I should request? My doc is on board with that.

To answer the question about the pump - yes - I"m actually renting a pump - medical grade - a Medela Symphony.

I do think that we are going to do whatever we can to get the formula into her, even just for the short term - I'm very concerned about her weight right now and have to at least try...
post #12 of 12
Hugs nurturebaby - you are on a tough journey with your LO, and sounds like sbgrace pointed you to some great resources.

The only thing I had to add was to suggest you maybe see a lactation consultant. It sounds to me like you probably have lots of milk, just trouble getting it pumped, and they may be able to help you with that. One thing that worked for me was pumping one side while nursing on the other - that way my LO stimulated the letdown I needed to really pump a lot. This worked really well in the morning, when my milk supply was highest and my babe didn't finish both sides anyhow. And for me, a simple hand pump actually worked better than the hospital grade pump (I was better able to get better letdown that way). But a lactation consultant would be able to help you figure out how to get the most milk possible from pumping.
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