Please help with next steps - breastfeeding at major risk - Page 2

[DeChRi]

Setback

48 hrs is usually our magic # on the HA formula when she is symptom free. We are now 96 hour in, and 48 hour in after my 2 min breastfeeding oops. And since about 7pm last night she has been declining. Screamed in obvious pain for 3 hour last night, and for about the last 3 this morning. She seemed better yesterday until evening, but seems to have started a decent here.

I am not sure where to go from here. HA formula was always my back-up plan. Now I don't have one.

[eclipse]

Someone on the other thread mentioned re-doing the newborn screening tests. I think I would get on that ASAP. If something's wrong no matter what you're feeding her, it could be more serious (not that allergies aren't serious, but I think you know what I mean) than food allergies. I know you've seen a doctor specializing in breastfeeding and an ENT - what about a gastroenterologist?

[eclipse]

Also, if she keeps getting worse today, a trip to the ER (while a huge PITA, especially on a holiday weekend) might get you into see specialist sooner than waiting on a referal from your pediatrician.

[jenfl]

Second the peds GI. Push to get in fast because of her age and severity.

[DeChRi]

Eclipse - you are right...GI doc is next stop. We have a large Children's Hospital 45 min from here w/ a Pediatric GI dept. I'll give our PC Dr a holler tomorrow if the last 12hrs were not a fluke. While our PC dr is pretty mainstream and not BF savvy, she is very supportive and a good friend. She fully admits that I "know more about BF than she ever will". That being said, she is a dear friend and trusts our judgement and decisions and will help get us where we need to go. And will be a good resource if we need to do something like Neocate in the days between.

[karika]

You have already been through so much here. I am not sure if this has been done yet, but have they tested your daughter for things? I commonly hear people say they get an IGG and IGE test to find out what the offending foods are. I can't imagine not nursing either. I admit I don't know what HA is (good way for me to learn, I will look it up), but I would imagine it is either cow's milk based, or soy, right?

I would suggest finding a nutrition/ allergist that advertises they specialize in food sensitivities. Make sure they are bfing friendly? There is a naturopathic office here that specializes in food intolerances. We haven't gone because of expense. My daughter clearly reacts to soy, gluten and dairy. She is 7 now.

If the formula isn't working, I would switch back to nursing again and continue the pure diet. If you have a juicer, use that (carrots and fruit) and a blender for smoothies(kale or spinach with fruit,ice, hemp protein powder (don't think anyone is allergic to plain hemp protein) and water or homemade almond milk (not sure if that's a no no on TED?). Keep a food diary if you can.

For a probiotic, I hear the best one is the Klaire Labs Detox Formula (it is free of all allergens, the only one I have found)

Do you have anyone you could ask to come over?

[crunchy_mommy]

Originally Posted by DeChRi

48 hrs is usually our magic # on the HA formula when she is symptom free. We are now 96 hour in, and 48 hour in after my 2 min breastfeeding oops. And since about 7pm last night she has been declining. Screamed in obvious pain for 3 hour last night, and for about the last 3 this morning. She seemed better yesterday until evening, but seems to have started a decent here.

I am not sure where to go from here. HA formula was always my back-up plan. Now I don't have one.

Did you say you are using Similac Alimentum HA? I tried going back in the other thread to check but I got lost. Is it the powdered or the ready-to-eat? I'm looking at the ingredients now & it looks like the powered contains casein & corn + corn derivatives (i.e. xanthum gum), and the ready-to-feed contains casein. I don't know anything about formulas but I'm looking them up now & it seems like they all contain corn or casein. Now maybe if you tried the Alimentum ready-to-feed you could test against corn (since it's corn-free) or you could try something like Elecare which contains corn but is casein-free but contains soy oil. Are there any formulas out there that contain NONE of the top 4 allergens? I can't seem to find any. But I am wondering if your DD is reacting to something in the HA formula or if there is so much gut damage that she is just reacting to everything. Your story is tormenting me, I feel so bad that you are going through all this. I had an incredibly fussy baby who cried 10-20 hours a day but he didn't seem in pain & didn't seem to have allergies -- but it still took (still taking) it's toll on me. I've been trying to research this for you to see if I can find any more ideas for you but it seems like you've been down many paths already.

[DeChRi]

Wow, thanks so much for all of the prompt replies. Re: the Alimentum...I spoke to the allergist about the fact there is caesin and corn in it. She said the caesin factor would make no difference, as part of the benefit of the hypoallergenic formula is that the caesin/proteins are broken down to the individual amino acid level, thus taking the inability to digest it out of the equation. However, she did say that if she corn allergic, it could cause issue. That with the HA formula, corn can be the only real culprit. Thus the reason it's twice the freakin cost. BUT...I am due to buy more todya & great idea on getting the premixed w/o corn.

It's my understanding that normal allergy testing can't be done @ 15 wks, but I surely could be wrong?

We would be fine taking her in this weekend. We have parents w/in driving distance to help w/ the other kiddos. And last time we had a major issue (DD2 had reflux so bad they thought it may be pyloric stenosis), our GP said to go to the Children's Hospital ER and she would call ahead to help hurry us through. So she would probably be happy to do the same this time.

Baby is sleeping on me now & when she wakes we'll see what happens.

Thanks for all of the ideas...I'm reading and writing them all down...just can't quote/comment well as I'm on my phone since it's easier to hold than laptop w/ baby on me.

[mamafish9]

Your allergist is wrong about the HA formula. Most allergists only acknowledge IgE allergies, which are generally protein based reactions. But food intolerances can be to any part of the food, so the HA formulas are "less allergenic", but a dairy intolerant child can still react to them.

Also, my understanding is that the formula is "predigested", but down to peptides, not amino acids - so those could still be reactive as well. There are lots of kids that don't tolerate HA formula (that's why Elecare & Neocate exist - and some kids don't tolerate those either).

I will say, if your child is that dairy sensitive, and you were taking probiotics grown on dairy during your TED, then dairy intolerance alone may explain the entire problem. Do you happen to remember which brand you were on? Not saying that is the problem, but it's possible there's actually a fairly straightforward explanation for your daughter's reactions, and despite everything you've tried, you've never been *completely* dairy free.

[DeChRi]

Mamafish, I've had the exact same thought process re: dairy...and that is part why I'm eliminating again. Here is where I get hung up in my thought process...During the first elim diet, the probiotics were no dairy free the first 10 of the 21 days, but WERE the remainder. So after, even say, a week of being totally dairy free...could she be SO dairy sensitive that she would react SO violently to my breastmilk, BUT never ever have any symptoms stool-related? The Ped/LC/Allergist lady seemed to think that if it was that extreme, her stool would be affected.

I wish soy wasn't such a likely culprit as well or I'd try giving her a couple bottles of soy formula and see what happened.

Just thinking aloud above. I'd love Nothing more than for this to a dairy allergy. Wishing I had Neocate on hand.

[DeChRi]

Mamafish-it was Udo infant probiotics. Since, we bought dairy/soy free ones, but for this current TED I am supplement free.

One corn question, thnking aloud...last TED diet I did turkey, a combo of organic freerange and the ones from the grocery to subsidize what I couldn't afford in freerange...but instead of the Tyson ones I grabbed the "Natural" ones...of course knowing that "Natural" at a standard grocery means nothing. Does that type of meat (the plain turkey breasts...raw, not seasoned, etc) contain any corn products? Just trying to think what could have been still excessive in my diet, AND in lighter amounts in the Alimentum that would build up in her system after a couple days.

[karika]

I am like mamafish, thinking about you and your family going through this. I belong to a group called gfcf kids on yahoo. Most of them, like 99% are there because their children are on the diet to try to 'heal' a special need, like autism, adhd, or asperger's (we eat this way more for behavioral and philosophical reasons, but I have discovered I am celiac by doing this). Their children react visibly to foods, like they may start talking when the food is removed (after a few weeks without gluten), then go back to babbling if an infraction happens. I have read threads there about how the food fed to the animal can cause a reaction. ie beef that is fed grains can cause a reaction in a gluten sensitive child. My guess is the turkeys are fed corn. I do not know much about corn sensitivity, but just wanted to share that what the animal eats can affect things for a very sensitive person, in case corn is the issue. I avoid corn also, especially any GMO corn. I am really hoping you can find some answers.

[DeChRi]

Karika-thanks so much for the info!

[dannic]

Originally Posted by DeChRi

Mamafish-it was Udo infant probiotics. Since, we bought dairy/soy free ones, but for this current TED I am supplement free.

Hi, mama. I actually have the Udo infant probiotics in my fridge and it says: "may contain traces of milk and soy" on the bottle...is this the one you were thinking was dairy free? I thought it was too when I asked DH to buy it. My 3 wk NB seems to react to it, if that helps? (maybe you haven't truly been dairy free?)

In my thoughts...

[DeChRi]

Dannic, sorry I was unclear! That is the one I started on then noticed a week into the elim diet and ditched.

Stuff hides everywhere!

[dannic]

gotcha!

[DeChRi]

pumping @ keyboard....
im thinking...since she is suddenly not responding to the HA formula, Im thnkg the following...
1-she's allergic to the corn in it, or the dairy, even though it's pre-digested
2-it's not 100% allergy related

since she is alread upset, i'm considering doing a couple day trial of soy formula. i know the crossover of dairy allergic and soy allergic is large, but if she is the same on soy as on HA, then we can at least save on formula while we figure it out. And if she declines even more, we can draw other conclusions. And maybe, by the grace of all things, she will just be dairy intolerant and she will be miracle cured. Since I am no longer going to set her off, since she already is, may as well try.

[mamafish9]

Which dairy/soy "free" ones did you buy?

The problem is that legally, you can say a food is dairy free if it only has a tiny amount of dairy protein in it - and very sensitive kids react to that. So if the probiotic was grown on a dairy medium, a tiny amount of that dairy sticks to the probiotic, and can cause plenty of problems. Another example - most vitamin C is made from corn, but you see lots of multivitamins with corn-derived vitamin C that say "corn free" - because they contain only very minimal levels of corn protein, so they can legally say that.

Given that your allergist only believes proteins are a problem, I'm guessing she doesn't worry about sourcing a probiotic that isn't grown on dairy.

Also, did the second probiotic contain FOS/inulin? That can also cause very bad reactions for lots of kids, so more than one possible culprit.

And my son never had wonky stools from dairy, gluten, corn, apples, potatoes (he did from salicylates, but that's a different issue). Some kids only have eczema, some only have behavioral reactions, some only have sleep disturbances. Sometimes, the reaction your child has changes - my son used to get stuffy from gluten, then his reaction got purely behavioral.

ETA: Just looked up the ingredients for alimentum. It is 8% soy oil (the powder, 1.1% in the ready to feed version). Again, not soy protein, but lots of kids with food intolerance to soy (vs. food allergy), react to any part of soy, not just the protein. So possibly she's building up a reaction to that. Safflower oil, another ingredient, can cause problems for some - and it has a lot of omega 6 fatty acids, which are inflammatory (so again, you'd perhaps see a build up reaction over time).

I also looked up "casein hydrolysates" - it's milk proteins broken down into smaller proteins, NOT to amino acids. So it's possible she's also sensitizing to these smaller, dairy derived proteins. http://www.cps.ca/english/statements/AL/al94-02.htm

[DeChRi]

Originally Posted by mamafish9

Which dairy/soy "free" ones did you buy?

The problem is that legally, you can say a food is dairy free if it only has a tiny amount of dairy protein in it - and very sensitive kids react to that. So if the probiotic was grown on a dairy medium, a tiny amount of that dairy sticks to the probiotic, and can cause plenty of problems. Another example - most vitamin C is made from corn, but you see lots of multivitamins with corn-derived vitamin C that say "corn free" - because they contain only very minimal levels of corn protein, so they can legally say that.

Given that your allergist only believes proteins are a problem, I'm guessing she doesn't worry about sourcing a probiotic that isn't grown on dairy.

Also, did the second probiotic contain FOS/inulin? That can also cause very bad reactions for lots of kids, so more than one possible culprit.

And my son never had wonky stools from dairy, gluten, corn, apples, potatoes (he did from salicylates, but that's a different issue). Some kids only have eczema, some only have behavioral reactions, some only have sleep disturbances. Sometimes, the reaction your child has changes - my son used to get stuffy from gluten, then his reaction got purely behavioral.

Hang tight while I have you here....running to the fridge.

[DeChRi]

http://www.amazon.com/Klaire-Labs-Th.../dp/B001PYXMV4

This is what we switched to. I have taken her off of them for a couple days now, out of sheer paranoia.