really needing help

[MommaLura]

My dd is just shy of 4 months old and I've seen some problems since birth.Her biggest symptoms are vomiting, bloody rashes, reflux, uncomfortable trapped gas, ruflux, screaming, and affecting sleep. I'm on a TED of lamb or goat and special pancakes (buckwheat flour, sugar, corn free baking powder, canola oil, and water) and almond butter which is our baseline. When we're at baseline she sleeps very well and those symptoms clear. I get irritable when I'm tired, so I really value my sleep. (I spent almost 2 years not sleeping b/c of my ds' issues) After I feel rested I'm always trialing something. I've gone back to a more regular diet a few times and everything falls apart.

Over the holidays I ate a few things questionable. One day it was vegan carrot cake (I'm sure that causes problems, but a week later?) then goat milk vanilla yogurt (haven't seen a reaction on other trials) and finally shrimp and crab legs. Two nights ago I barely slept, she was waking constantly and screaming all night long. I could feel gas, but it wasn't moving. Last night was better, but was still frequent waking (about 5 times 11pm and then every hour after 3am). This morning severe reflux. I know she reacts to rice, wheat, millet and dairy the worst. But she has problems with all fruits and vegetables, I suspect corn and now shellfish. This is my second child with these issues and now I think its me. I don't believe her problems are IgE allergies.

Please help! I know this isn't healthy, so please don't lecture. I'm trying to do the best thing for my baby. I've read enough through here to know we have some amazingly helpful, brilliant people. You know, reading through this I think I understand why no one believes me...

[FAmom]

Wow!  You really are swamped with a lot.  I hope that some others will chime in with some good suggestions for you.  There are just a couple things that I thought as I read over your post..... and if they are helpful or not I'm not sure. 

For the gas, could you use something like milicon drops?  I know those saved my life with my kids.  Given everything you have got going, I'm not sure if they would be helpful for your baby or not.... but, if you asked your pediatrician, maybe they could help with a bit of relief.  I used them with all 3 of my kids for gas.

The foods that you listed that you are questioning.... the carrot cake, did it have walnuts?  With the goat milk vanilla yogurt... maybe the vanilla?  Sometimes it isn't necessarily the actual vanilla, but cross contaminants of it like nuts or soy.  Also, I don't know all that much about goat milk, but if there are any dairy issues (the actual lactase/lactose), depending on severity, maybe the yogurt itself? And, shrimp & crab... right now we are going through thinking our DS#3, who is 2 and breastfeeding, actually had a reaction last night from my eating some crab for the first time since having him.  But, my thing aside, shellfish is a biggie that I'd worry about. 

It seems like you have a very specific diet, and the things that you added in really could be on the other end of the scale.  Are you back on your baseline diet right now?  I know with the holidays & such, it is hard to be on such a strict kind of diet.....

Oh, btw, one other thing I thought of, not necessarily to say it is everything, but, around the holidays, with so much activity, sometimes the overstimulation can contribute to waking and a baby really being kind of "off".  For us, even just one day, with a birthday party, would mess us up with sleeping and crying.  Not that it is so for you, but with new foods, lots of other stimulation, etc., sometimes it all gets to be too much for a baby (and even older kids).

But, I'll cross my fingers for you that someone here chimes in with something helpful for you.  I agree there are a lot of very smart people here that have a lot of information that might help you. 

[kjbrown92]

Originally Posted by MommaLura 

My dd is just shy of 4 months old and I've seen some problems since birth.Her biggest symptoms are vomiting, bloody rashes, reflux, uncomfortable trapped gas, ruflux, screaming, and affecting sleep. I'm on a TED of lamb or goat and special pancakes (buckwheat flour, sugar, corn free baking powder, canola oil, and water) and almond butter which is our baseline. When we're at baseline she sleeps very well and those symptoms clear. I get irritable when I'm tired, so I really value my sleep. (I spent almost 2 years not sleeping b/c of my ds' issues) After I feel rested I'm always trialing something. I've gone back to a more regular diet a few times and everything falls apart.

Over the holidays I ate a few things questionable. One day it was vegan carrot cake (I'm sure that causes problems, but a week later?) then goat milk vanilla yogurt (haven't seen a reaction on other trials) and finally shrimp and crab legs. Two nights ago I barely slept, she was waking constantly and screaming all night long. I could feel gas, but it wasn't moving. Last night was better, but was still frequent waking (about 5 times 11pm and then every hour after 3am). This morning severe reflux. I know she reacts to rice, wheat, millet and dairy the worst. But she has problems with all fruits and vegetables, I suspect corn and now shellfish. This is my second child with these issues and now I think its me. I don't believe her problems are IgE allergies.

Please help! I know this isn't healthy, so please don't lecture. I'm trying to do the best thing for my baby. I've read enough through here to know we have some amazingly helpful, brilliant people. You know, reading through this I think I understand why no one believes me...

I agree about the goat milk yogurt, that the cow's milk and goat's milk are very similar proteins and it seems like a lot of people have problem's with both (my kids and I can't have cow, sheep, goat, or water buffalo milk). And for what it's worth, I believe you. The vegan carrot cake probably had a lot of ingredients in it... some that come to mind are soy, some kind of gum to hold it together: xanthan gum the most common one used is corn derived), regular salt (corn), etc. Since she seems to react to so much, I'd go with as many single ingredient things as possible. Are you keeping a food journal? Noting all ingredients and all reactions you mentioned (sleep, skin, poop, gas, vomiting, etc.). For my DD2 we used gripe water, which is chamomile, ginger, and fennel, but most of them also have citric acid (again, corn). But that helped the gas a lot while I was trialing foods. We had enough other symptoms that we could still definitely tell that she was reacting. From age 1 to 3, she had only 20 foods so yes, I know what you're going through. And sometimes it seemed like she was reacting to everything. But I finally figured them all out. Then when she was about 3, and she was weaned, so we didn't have to account for both of us, I had the ALCAT test done on her, and she got some foods back, and lost some of the foods that she'd been on for those 2 years. Now she's almost 6, and she's only avoiding 5 foods (corn, gluten, dairy, soy, and beef). Since you do almond butter, can you make almond milk (all the commercial ones have way too many ingredients), and can you do almond flour? What's in your corn free baking powder (I know mine is tapioca starch, baking soda, and cream of tartar)? I'm just asking because if there are ingredients in there, then maybe you can use whatever you know is safe in there in other things. Have you tried any foods that you hadn't had before - like do you normally have quinoa, or beets, or asparagus? I'm just wondering if you've tried more obscure foods and I don't know what your normal diet is to find out what obscure is for you. With the lamb and/or goat, do you make bone broth (24-36 hour simmer)? The gelatin in that is very healing to the intestines.
 

[MommaLura]

Thank you! I know the carrot cake was a very, very bad choice. It is a symbol of me failing. I haven't had Thanksgiving or Christmas dinner in 3 years, this year I had nothing to eat at either. I'm super hungry, worried and loosing mental strength. At least with ds I could eat sushi rice whenever I was hungry. All the gripe water we have in town has citric acid and milicon drops aren't tolerated. The first time I went through this I didn't want to eat anything unsafe because I knew what it meant and I couldn't put my ds through that. I didn't crave everything I saw and even if someone pressured me, I held firm. Not this time....

I broke baseline again yesterday. Going 9 hours without food breaks me. My hunger has been out of control lately. I know she's got to tolerate more than a few things, I just can't figure it out or why I have babies that react to everything I eat. Today was her worst =( She couldn't go to sleep and was just screaming for hours. We took turns calming her for a few minutes, sometimes were able to burp her. She finally crashed and I'm stuck in the rocker (thankful for a computer) and dh took ds out of the house so nothing wakes her (he woke dd today with one of those popping toys). I'm tired, short on patience and frustrated. But, it did help to say that ;)

[FAmom]

Please remember you are human..... you are on what sounds like such a stringent diet.... and I think it is normal to go off here and there.  Don't feel like you are failing.  You are doing all that you can, and having a moment eating carrot cake does not take away from everything else that you are doing. 

I was wondering, and maybe I missed something, why you are going 9 hours without food?  Do you mean at night, during what would hopefully be sleep hours?  And, really, if you are breastfeeding, I can't even imagine how anyone could go more than a few hours without eating something, let alone if they were on the diet you are on. 

The only other thing I was thinking, and I say this as a mom of 3 kids who has breastfed on demand for all 3... including still nursing my toddler, is have you thought of asking your pediatrician for some sort of supplement like formula?  As I read I was wondering if at some point, just given all of what you are having to do dietarily, and the effect that foods are having on your baby, if the possibility of finding something that would help, might include the possibility of something other than breastmilk/breastfeeding?  I don't suggest that cavalierly either because I know how I feel about breastfeeding.... but, at some point, if you have completely deteriorated physically and mentally from exhaustion and dietary restriction, the baby won't benefit just because they are breastfed.  They need their mom too, as does your DS & DH. 

And, you know, it really struck me when you said you can't figure out why you have babies that react to everything you eat.  As a mom I think that is hard, and I feel that.  We want so badly to be able to give our children what they need, including nursing them and being able to nourish them.  Sometimes though, as with a host of other things, we find that maybe it just isn't the way it will work for our kids.  That, we have to do things differently than we'd like, and eventually, maybe it turns out in our own way, we find something that works better for our own kids.  It may not be what we planned on, it may not be perfect, or look like what anyone else is doing, but it ends up being what is best for our own children.

As you try to figure things out though, do you have any people you can call on to come help you out..... like family or friends?  Anyone that might come and occupy your DS at least, or someone who could cook up a recipe for you if you handed them one with the ingredients of things you can eat?  Someone who really could just do something for you that alleviates any of the extra daily "stuff" around the house, or even could give it a go and walk around with your DD for a few minutes to give your arms a rest? 

[changingseasons]

Boiron has a liquid colic relief that has no other ingredients (don't get the tablets though- those have lactose.) 

I agree about the 9 hours without eating though- that would break anybody!  Do you need meal/snack ideas to keep yourself full and healthy?    I found that the best thing to do was to keep some leftovers around so that there was always something I could just shove into my mouth if I didn't have time to cook something.  Like make a few extra pancakes, and throw one in the toaster when you need something fast.

[FAmom]

I was just loading my washing machine, and I kept thinking about your post.  And, maybe this isn't applicable at all.... but, I kept thinking about the gas, vomiting, screaming....

... it started me thinking about your DD getting air while nursing.  Do you have any latch issues?  As a feeder, how does she do?  And, I know it may sound weird, but I do remember with my first son there was a point in time that I did kind of put him in more of a sitting up position to feed him sometimes.  The other thing, aside from that and milicon drops, was my breastfeeding pillow.... I had one of those "my breast friend" ones.  He really was my hardest, and it seemed like I had to get him positioned just correctly or else he'd end up with the worst gas. 

Anyway, it was just a kind of a long shot idea, but, I know that gas can be just horrible, and I was thinking "what if it is something as simple as latch or position?".

[rhesp1212]

Oh mamma, I feel your pain! I was on 5 foods for 6 months, without being able to add anything back in successfully. You are on an even more restricted diet. Have you tried other non-gluten grains like quinoa, teff, and amaranth? What about gluten free oats? Have you tried a rotation diet to get more variety in?

This totally might not be the case, but some babies react to their mother's reactions. If mom has leaky gut and is intolerant to foods, sometimes her reactions will make the baby react. I would try epsom salt baths for both of you, and hopefully someone else will chime in on some other supplements that might be worth trying. Probiotics would be a really good thing for your little one as well, I'd guess.

Edited by rhesp1212 - 1/3/11 at 6:02am

[rhesp1212]

ugh...typed a long reply and it got deleted!

Are you atleast varying up your diet (psychologically) by creating new foods with the ingredients you can have?? Like egg free buckwheat muffins and bread, almond flour cookies, almond milk and cream (homemade....i can tell you how to do this if you want), homemade buckwheat crackers to dip in your almond butter .Look at the baking powder...if there are other ingredients in there, like tapioca starch you can use it to make an all purpose flour of sorts that you can use. Mix in a 3:1 ratio up to a 1:1 ratio of buckwheat to tapioca flour. Maybe try other sweeteners like pure maple syrup to change up your flavors a bit, or flavored stevia if your little one can tolerate it. Or spices like cinnamon, cumin, etc. to change flavors to give you more of a variety.

Is there a way you can post what foods you have tried so we can help you brainstorm more ideas? Also, sometimes it could be dose related. Meaning your baby might tolerate one portion of a food, but not more than that. If you haven't already, I would try one food at a time in small amounts on a rotational basis (once every 4 days) and see if maybe you can add a couple things in that way. I'm afraid that if you don't get some variety in your diet your little one may eventually build up an intolerance to the foods you are currently eating.

If you need some recipes for those things you can do a search here or I can give you some simple ones that you can modify using your ingredients. We are "everything" free too (no corn, dairy, eggs, gluten, etc.)

Valerie