don't know if I can do this anymore

[Tattooed Hand]

Hi ladies,

I've posted in this forum from time to time and well, haven't gotten much in the way of responses. I guess part of the problem is that I don't have any medical support to help me through my DD's extensive allergies. They affect her nervous system, digestive system and manifest in all the other usual ways as well. Nervous system includes horrible sleep (I was almost hospitalized for sleep deprived breakdown a couple of months ago and my DH had to take a leave of absence from his job and we are almost bankrupt).

I've been on an extremely limited diet for almost 14 months and with her latest test results (mailed to us with no explanation from a doctor it is very hard for us - with no car - to get to) I am looking at not being able to eat alot of fruits, veggies or rice either. I just don't know if I can do it anymore. I really want to wean my 13 month old DD and find her some hypoallergenic formula so that I can eat normally again. I work and between that, brutal nighttime parenting (extended wakeups, sometimes hourly) and the fact that I am totally without a support network of any kind, I feel like I want to die sometimes.

Is there some reason I should not do this? And do any of you have any recommendations for good formula? It needs to be soy, corn, dairy, wheat, nut, oat and rice free. Does such a thing exist? We tried hemp milk recently and she is currently getting over a bad reaction to that. I feel totally dispirited.

[springmum]

I couldn't read without posting, b/c it sounds like you have really hit bottom - I'm sorry you're having such a hard time:(

Although my son's issues where not quite that severe, I do remember feeling very alone and desperate at times.

I haven't read your history so I apologize if I ask or suggest something you've tried.

Being hungry and low on nutrients is never a good thing and neither is seeing your babe suffer - I know the feeling :(

Can I ask if you're still night nursing? Night weaning for us when DS was 18 months was a really good thing in many ways.  I couldn't parent exhausted all day so something had to give. I loosely used the Jay Gordan method and after a month he was sleeping longer stretches at least (it was a little difficult though) Waking due to foods continues to this day, but he's much easier to settle and they aren't as frequent. 

I don't have experience with formula's at all, but I know there are some mama's who have tried it, hopefully they can share their experience.

I know you said you don't have a car - do you have a local moms group you could connect with? 

I hope things start to improve quickly for you guys (hugs)

[kjbrown92]

Since I wasn't a "natural" parent when I started, the recommendation was 1 year of BFing. DD1 breastfed for 10 months, weaned cold turkey and went straight to milk. DS breastfed for 8 months, weaned cold turkey much to my dismay since I knew he had milk/soy intolerances, and was on neocate for 5 months. DD2 breastfed for 13 months. I guess what I'm saying is that you've done it for over a year, and if you're at a breaking point, then it's not helping you or the baby. I don't know of an elemental formula that is free of all of those. I know that neocate had corn. Are these IgE allergies or intolerances? Not sure if the elemental ones are okay for either of them because of the way they're broken down. You could test her out on formulas while still pumping to make sure she has something to go back to if they don't work.

If she's still waking up that much at night, are there food triggers that you don't know about? Or is that what the new list is that you got from the doctor. Could you call the doctor and ask for an explanation since you can't drive there?

But considering that my DS was on the same diet for 2 years (he just got rice back recently), there are a lot of foods that you can eat. Granted working cuts into food prep time and you can't rely on convenience foods with that list, but you shouldn't be starving. If you want to continue to breastfeed and want meal ideas, we can help there.

[bodhitree]

I am so sorry that you're having such a tough time. The sleep deprivation alone is like a special circle of hell, and the restricted diet on top of that is really hard to deal with. The thought of losing a bunch of fruits and vegetables must be really discouraging. I'd probably be thinking about weaning too! There is certainly nothing wrong with trying to switch to an elemental formula, but if I were in your position, I would definitely still pump so that you have the option of going back to breastmilk if the formula turns out not to work.

Here's another thought for you: have you tried strategies for healing besides cutting out problem foods? For example, I'm pretty sure that epsom salt baths have helped my DD sleep better as we eliminate foods and work on restoring an overall balance in her system. I'm also starting to learn more about probiotics and fermented foods as a way of healing the gut. There are also special diets, such as the GAPS diet, that are supposed to facilitate healing. Maybe you've already tried some of that stuff, but if not, it might help you see some improvement so you're not just constantly having to eliminate more foods. There are a lot of mamas on here who are more knowledgeable about this stuff than I am, so I'm sure that if you're interested they would have more ideas for you.

[changingseasons]

It needs to be soy, corn, dairy, wheat, nut, oat and rice free. Does such a thing exist?

No, unfortunately. Even elemental/hypo-allergenic formulas are made from corn syrup solids. That said, *most* kids can tolerate the elemental formulas because the proteins are broken down into amino acids. But they are also crazy expensive (~$35/can), so unless you can get your insurance to pay for it, it would be really hard with limited funds. Also, if your LO doesn't tolerate them, then you have to figure out how to start breastfeeding again or continue trying formula after formula. I don't want to be discouraging, because it might be a good solution for you- but I don't want you to think that it's a guaranteed way to make your life easier.

I wish I had more encouragement to offer, but I'm feeling pretty overwhelmed myself this week with all my current and newly added diet restrictions. Hopefully I'll bounce back soon and have more encouragement to offer.

Are you dealing with allergies, or intolerances? Are you seeing an allergist? What type of testing did you have done? What foods are you eating now, and what have you already tried and failed?

eta: I just found your last thread... do you still need help with the IgE results? Was it a RAST (blood) test? Does it have numbers next to the results? If you want to post them here, I'll see if I can answer your questions about them.

[Momo123]

I'm so sorry that you are feeling so alone and sad. It is so emotionally and physically draining to deal with this. I made the decision to switch from breastfeeding to formula because of a similar situation. As a PP mentioned, hypoallergenic formulas (Elecare, Neocate are the two most commonly used) have no protein, it is broken down into amino acids. But they do have corn in it, and even though it does not technically have corn protein, some sensitive babies still react. I'm not sure if your DD's allergies are IgE or intolerances, my DS is IgE to dairy and egg but intolerant of gluten, corn, soy and some others and he still seemed to react to the corn with eczema. He improved a lot (eczema, stools etc) after we went off formulas altogether. If you do try this route, I second the suggestion to pump for a while to make sure your DD can tolerate it. Also, these formulas taste really awful (I tasted it) and if your DD is used to breastmilk, she may not drink it.

When I was in the trenches, I thought that stopping breastfeeding meant total failure as a mom. I was so depressed and devastated when I made the decision to stop because my DS never got better despite my best efforts. But looking back, I think I made the right decision for us at that time. I still have regrets, but I think a mama's mental and physical health are very important too even though we are always thinking of our babies first. So I think it's okay to make a change to help BOTH of you. Best of luck and please know you are not alone...

[cristeen]

Purchased formula isn't really an option in your situation, in the US they are all cow's milk, soy or corn based.  With a babe that old, and extensive allergies, I would suggest looking at the homemade formulas on the WAPF website.  She's old enough that you should be able to tinker with the ingredients a bit without too much concern.  You'll be looking at the bone broth based one, hopefully she tolerates chicken.  This is what I've been contemplating for my DS when we run out of the formula we know he tolerates (since he's showing signs of a dairy allergy and I'm anti-soy). 

With the toll it's taking on your body and your life, I would absolutely say do what you have to.  Get what you need to make the formula, and test it.  See if she tolerates it.  If she does, work on slowly weaning her.  I would also work on increasing her solids at the same time.  There's no reason that you have to bear the brunt of this alone.

Have you tried posting in the FYT section to find some local mamas who might be able to help you out a bit?  I know my local MDC mamas group has been great for moral support while dealing with all sorts of things, and I even found a mama who will watch my (formula-fed) toddler overnight if I need a break. 

HTH

[Tattooed Hand]

Thanks ladies. If I wean her I definitely need a substitute because her diet is too limited and I'm afraid she'll be too hungry/malnurished. For this reason, though I limit nursing for around 5-6 hours in the middle of the night (like 10:30-4ish, on good nights she will hardly wake during this time or go back to sleep easily with a little cuddling), I can't night wean her more than this. Sometimes she wakes is genuinely hungry. She also goes (as of yesterday) to daycare for 4-5 hours a day, 5 days a week, so I can't expect her to get all her milk in the 6-7 hours she is awake and home with me. She does not drink BM from a bottle.

My family practitioner doesn't know anything about allergies and referred us to a person we thought was a specialist, but turned out to be someone whose knowledge of allergies is more of a hobby. I was a little appalled by his lack of distinction between true allergies and intolerences, as well as his total lack of knowledge about allergic reactions (sleep disruption as a feature of a nervous system reaction seemed news to him and he advised me to let DD cry all night until she learned to sleep the night through - needless to say I ignored him). We did a blood test, but the results say IgG at the top, not IgE. What is the difference? It is a list of 96 different foods.

Here are some of the level three numbers:

Broccoli - .470

Cantaloupe - .412

Cauliflower - .506

Coconut - .818

Oats - ..924 (never had directly, only through my milk)

Sweet Potatoes - .820

Brown rice - .431

Sesame - .580

Walnut - .438 (never had directly, only through my milk)

Watermelon - .497 (never had directly, only through my milk)

Level 2 stuff (.300-.399) - almond, asparagus, avacado, carrot, cabbage, grape, lettuce, tomato.

Does this mean they are true allergies? How severe? I've been eating some very trace amounts of soy and that didn't show up as a problem, but when I gave her a little tamari in her food she definitely reacted with rash, puffy, itchy eyes. I've eaten eggs without a problem and they don't show up as a problem but we've never given them to her directly. So I should be careful with the things that I haven't eaten in awhile, like wheat and dairy? What do I do about level one stuff (.200-.299)? There are a lot of things on there she eats every day, like apples. I basically need to try to expand my diet as much as possible, so that I can breastfeed her and feel like I am dying. How long do I cut these things out of her diet? I'm afraid to give her foods not on this list because the bad reactions are bad. I tried hemp milk for instance and she reacted to me drinking it mildly, and then I gave her a little directly and her ezcema flared up, eyes puffed and we had some very bad sleep nights and aggressive behavior (and she gets very easily startled and screams/cries).

She is OK with beef, chicken, lamb, pork and all the fishes. The thing is that I spent so many years as a vegetarian that I hardly know how to cook meat. I started eating it again when I cut out dairy, soy, nuts, corn, wheat and eggs (I started eating those again in August, after she didn't show a reaction).

[kjbrown92]

IgG are intolerances, not allergies. So that's sort of a good/bad thing. Good because they aren't life threatening. And good because they can be healed (not outgrown, as some people like to say). Bad because it takes effort in the healing, and they react to more than just the protein in the trigger food.

So, yes, expand your diet. Anything come out as no reaction?

I don't use tamari so I don't know the answer to it. But doesn't it have wheat in it? So could she be reacting to that and not the soy? The top 4 intolerances are dairy, gluten, soy, and corn, in that order. When we went off the intolerances, we were told to take all reactive foods out for 6 months, and rotate the safe ones (once every 4 days). Then after six months, add the trigger foods back in one at a time, to the rotation. If there was a reaction, take it back out. If there was no reaction, leave it in the rotation. We started 2.5 years ago. They originally reacted to about 40-50 foods each (DS and DD2). Now DD2 only has about 6 foods she can't have, and DS has about 15. I also found out that I couldn't do the top 4 foods. My blog has some recipe ideas and if you give us a list of safe foods that were tested and didn't cause a reaction, we could figure out some recipes for you. And remember, the tests aren't always accurate (we had a false negative on a couple foods for each kid, which were foods that we already knew about luckily).

[Tattooed Hand]

Thanks, I will definitely check out the blog!

Tamari (at least the kind we have) is wheat free. It is a soy product though. DD won't eat certain things that the test says are safe, like regular potatoes and I am not going to force her. Maybe they don't agree with her either. When I started cutting things out of my diet when she was a month old, I did cut out gluten for 3 months and then added it back in because it didn't make a difference. It's really specifically wheat and oats that are the problem.

I think I am going to demand a referral to an allergist on our well baby appt on Friday. I've also ordered another book - but it's vegan and with the meats and fishes one of the few types of things safe for us. I will definitely look into your blog for meat recipes in particular.

And I too have a dairy and wheat intolerance (or at least I did when I started this diet).

I know lots of people are going through this. I feel kind of embarrassed about getting so upset, but my marriage, material and emotional well being are really taking a beating. Getting these test results was the last straw.

[changingseasons]

Originally Posted by Tattooed Hand 

I started eating it again when I cut out dairy, soy, nuts, corn, wheat and eggs (I started eating those again in August, after she didn't show a reaction).

I hate to ask, but did she get to baseline (no symptoms) before you added those things back in? Those are some of the most common allergens, and if she wasn't at baseline it's possible that you just hadn't taken out *enough* foods to see full improvements. Sorry to say that. Also if she's not at baseline, I would keep soy out of your diet completely after seeing that kind of reaction. I would also get IgE if you can, although it's not very accurate before about 2yo.

What foods are you avoiding right now?

[Tattooed Hand]

I am almost certain that meat is OK. Around New Year's we went to stay with friends and we ate a very meat and egg heavy diet (with different veggies, like herbs and fennel) in place of our usual diet while there. She was like a different baby - she slept 5-7 hour stretches at night, was calm, her ezcema began to go away, and her digestion seemed to be working well. It was the big wakeup call that something in my diet was not working. Sure enough, then we got the test results and I realized that all the rice, sweet potatoes and coconut in our diet, along with broccoli and some other stuff was the culprit. That was as close to a baseline as she ever got. We were only there for 5 days, so hard to know if she hit a baseline. It lasted for another 1-2 days after we got home and then things went to pot again.

The meat my friends and I eat is local, organic and if beef, for instance, is grass fed. I'm very careful about that.

I am not eating nuts, soy, dairy, corn, wheat, or anything in the 2 or 3 category that I listed above. Because I am afraid to try anything not proven safe on the list. I'm basically eating potatoes, eggs, meat, fish, peas, green beans, squash, millet, quinoa, amaranth, buckwheat, mushrooms, herbs, garlic, ginger, onions, barley, beans. I've also given her beets and kale, though it's not on the list. She eats lots of apples and pears, but wonder if I should cut those out since they rated a 1 on the test. If I did, she would get no fruit because the only OK fruit are peaches, which we can't get at this time of year.

I don't even know what a baseline looks like because she was covered in ezcema from 4 weeks of age and crying hysterically around the clock until I went on the diet at 5 weeks of age.

We had a second test done that lists 0 for IgE, but it's only for like 8 foods, most of which she has never had and I have only ever had in small amounts extremely infrequently. There is a score of .01 for soy and .04 for corn, but that's it. I have had two servings of popcorn in the last 12 months and a dash of tamari in my food like 3-4 times. Does she have had to have eaten these foods for either of these tests? Could they show up low if she's only been exposed through BM but we'd actually have a way bigger problem with them if she had them directly?

[changingseasons]

We had a second test done that lists 0 for IgE, but it's only for like 8 foods, most of which she has never had and I have only ever had in small amounts extremely infrequently. There is a score of .01 for soy and .04 for corn, but that's it. I have had two servings of popcorn in the last 12 months and a dash of tamari in my food like 3-4 times. Does she have had to have eaten these foods for either of these tests? Could they show up low if she's only been exposed through BM but we'd actually have a way bigger problem with them if she had them directly?

No, she doesn't have to have any exposure for the IgE tests. But IgE tests are really inaccurate until about 2yo, so keep that in mind.

[kjbrown92]

Originally Posted by Tattooed Hand 

I am almost certain that meat is OK. Around New Year's we went to stay with friends and we ate a very meat and egg heavy diet (with different veggies, like herbs and fennel) in place of our usual diet while there. She was like a different baby - she slept 5-7 hour stretches at night, was calm, her ezcema began to go away, and her digestion seemed to be working well. It was the big wakeup call that something in my diet was not working. Sure enough, then we got the test results and I realized that all the rice, sweet potatoes and coconut in our diet, along with broccoli and some other stuff was the culprit. That was as close to a baseline as she ever got. We were only there for 5 days, so hard to know if she hit a baseline. It lasted for another 1-2 days after we got home and then things went to pot again.

The meat my friends and I eat is local, organic and if beef, for instance, is grass fed. I'm very careful about that. 

Is it possible that you could find out the things that your friend cooks/eats, and model your diet after her's, if that's the closest to baseline you've gotten? Also, is there anything different environmentally between your house and your friend's house, that could also be bothering her (besides the food). As in do you have a pet and she doesn't? Do you have carpeting and she has all wood floors? A different part of the country? It could be multiple factors.

[Tattooed Hand]

hm, they have a dog and we don't. Otherwise, we both have wood floors, live in the same general area (an hour apart?) and I even use the same cleaners and we both have wood floors. We ate, fruit and pork, basically.

We've finished weathering the bad reaction to hemp milk and even with her molars coming in, she didn't wake up much last night (though very early, but that's the teething). I'm also reading the food allergy survival guide and that's somewhat helpful.

What are some ways you heal your LO's gut?