Walking into the cave, part 3

Just last week we took B to see her doctor to try and figure out a game plan. I knew that blood in her stool was a sign of gastrointestinal distress, just as I knew that mucus could be a sign of the same. I knew my baby wasn't feeling well and wasn't the happy, giggling baby I knew she could be. I just didn't know how to get her back to that good place without sacrificing my own health and well being for way too long. We have a lot going on in our lives right now that I can't fix or change and this was one problem that I was not willing to accept so I needed a course of action.

Our pediatrician was initially thinking he was going to do an x-ray of her belly to see where the bleeding was coming from but after asking some questions and feeling B's abdomen, he decided that an x-ray wasn't going to tell us anything and we had a lot of choices for tests to run or not run, now or down the road. We chose to take some blood via heel prick (B was not a fan but she's a good bleeder) and run a couple tests. One of those tests was a CBC panel and I didn't catch the name of the other. These tests took about 15 minutes to come back and showed us that B is having some sort of immune response with elevated leukocytes and elevated kidney function. The doctor said that her numbers were not really out of bounds for a healthy baby fighting even a cold bug but that something was going on. The second test showed extremely high potassium levels but he checked with another doctor in the practice and they believe their machine needs to be calibrated because another patient had gotten similar results but then tested normal at another lab.

We talked about other allergy panels but both agreed that drawing blood from an infant for highly inaccurate tests was not how we want to handle things at this point. We talked about prick and patch tests but again, inaccurate and no fun for a baby. The doctor said that if we get to a point where there are just too many things hurting her, he might recommend switching to a highly broken down formula at least for a little while to help her reset. But when my body is fully capable of producing the amount of milk she needs, it would be so hard for me to switch to formula even for a little while. I know that it's not about my feelings but I'm not ready to give up the bond we are able to maintain while nursing and the comfort it gives her.

So his suggestion and our plan of action at this point is to cut out gluten and see if that makes any difference. Like all other food eliminations, we expect it to be a couple weeks to a month before we truly see any change because the proteins need to work out of my system and then out of her system. We're not going to make any final decisions about whether or not gluten is the issue until she goes back for shots at the end of the month and then we'll look at other possible issues. There is something called FPIES that is my ultimate fear for her, in which she basically cannot tolerate any food proteins. FPIES can be a temporary diagnosis or a lifetime problem. But we're not there yet. We're here. We're accidentally embarking on the paleo diet at the same time that this mama starts to get back to some form of exercise to get rid of the flabby belly that having my fourth child has left behind. We're starting a real food way of life with a daddy man who doesn't eat fruits or vegetables without a fight and a crazy toddler who can't have dairy proteins. We're changing the way we eat with a five year old who hates everything I put on her plate and a ten year old who has established favorite foods that I may never make again. It's a good thing wine is gluten free and I don't have to cut it out so far.

Walking into the cave, part 2

So we suspected that soy was an issue and were staying casein free and B was getting better but wasn't what anybody would call a happy baby. So I decided to try a Total Elimination Diet. On the TED, you cut your foods down to the bare minimum and the least allergenic foods and then slowly add things back in and watch for reactions. I started by eating only pears, rice, turkey, sweet potatoes, potatoes, green and yellow squash, salt, and pepper. I was very surprised with the amount of variety and flavor I was able to achieve with only those few foods and I didn't feel like I was truly missing out on anything. The trouble was with the effort I needed to put forth to feed myself. There was no slapping together a sandwich and you can only eat so much organic puffed rice cereal with rice milk so I was left peeling and cooking for every meal. I don't mind cooking all that much and have a family of 6 so it's not new, it was just hard knowing that I had absolutely no easy grab and go foods.

While on this diet, B was able to heal so much and it was so exciting to see my real baby appear from behind the cloud of pain she had been in! Her poop started to look like normal baby poop and smell like normal breast fed baby poop. She was relaxed and smiling all the time, well, except for tummy time. Tummy time still pisses her off. That's not a food issue. The Total Elimination Diet truly showed us that food issues were really the key to getting this child well and happy once and for all. The downsides of the TED were twofold for me. First, I started it while we were travelling out of state and there was no way to continue on this diet while staying in hotels and eating at restaurants. Secondly, I started to feel like garbage. I felt like a floaty balloon, sort of light headed and dizzy all the time and overall not well. So I decided to start eating normally again but be vigilant about keeping all forms of soy and dairy out of my diet.

As I said before, there were setbacks when I would eat something without thinking about it or naively thinking there was no reason for there to be soy in it. It truly took me a long time to get it to sink in that there is soy in everything. Meats, dairy, soda, breads, sauces, seasonings, and anything in a jar, can, bag, or box. Soy is a very cheaply grown and processed product in the US so it is used as a filler in thousands of products you see every day. If you have a food label anywhere near you, odds are there is some form of soy listed, whether it's obvious to you or not. Have you ever read the words 'natural flavors' or 'spices' or 'seasonings'? Those are all terms that hide soy and dairy in many products and the only way to know for sure is to call the manufacturer of each product and ask for your specific set of allergies/sensitivities. I don't know about you but in this house ain't nobody got time for that! Is anyone else starting to feel a little annoyed by the labeling practices in this country?

But even when I was being good and reading everything, I still didn't have the happy easy baby that I had enjoyed while on the TED. B was still giving us green mucus poops and staying up all night kicking her little legs trying to release the huge amount of gas she had. I would be able to force out a few large toots and her whole body would relax and she would fall back to sleep only to start kicking her legs again an hour later. When I saw visible blood in her stool, I knew we needed to stop hoping that gas drops would fix things and get some more answers. So off to the doctor we went!

Walking into the cave, part 1

I was so angry last night. I was thinking about how unfair it is that I have to cook two meals and use four measuring cups and two spatulas and relearn so many things. I have to train myself to read every ingredient of everything I ingest for the foreseeable future and my husband and kids can just skip along putting whatever the hell they want in their mouths. It isn't fair that I have to do all of this changing and nobody else has to even give it any thought.

I assume this is a common train of thought for everyone who is new to cutting things out of their diets. I remember feeling this way almost three years ago when it came time to cut out casein for my first allergy kid. I remember this feeling of being so overwhelmed and feeling like nothing was safe. I didn't know then that it was only the tip of the iceberg when it comes to food sensitivities and the state of our food. I didn't know then that I would have another allergy baby with a much more complex set of food issues. I didn't know then that I would accidentally become a paleo eating cavegirl.

My fourth daughter is a beautiful perfect 3 month old with some major food issues going on. We aren't 100% sure what she needs to be healthy as this point but we're trying really hard to figure it out. Starting early on we knew that B had some problems. From the first few days we noticed that she was very high strung and never ever stopped moving. It was almost like she was tense in every muscle and just vibrating all the time. As time went on we started to realize that she spent absolutely no time happy. She was just a miserable baby. So I cut out dairy including all hidden sources of casein. This was second nature for me and so easy to do because we already keep most hidden casein out of our home and I'm lactose intolerant so I didn't really miss the dairy so much. So I started living on Clif bars as a nursing mother with a brand new baby and three other children who all have needs. So many NEEDS!

It wasn't until B was about 6 weeks old that we decided there was something else going on. So I cut out soy. Soy proteins are very closely related to milk proteins so many children that have problems with dairy will also have problems with soy. One week later our baby relaxed. It was like she was finally able to take a deep breath and just stop moving. It was like I was finally able to relax too. I don't think I fully realized how tense I had been until the day we were finally able to take that breath. Over the next several weeks we were reminded of how miserable our daughter had been each time I accidentally ingested soy and she had a setback. She would go back to being tense and crabby, having green mucus poops, and severe gas. Each time I poisoned her would mean three days of misery for all of us.

So we knew soy was a major trigger. And we started to learn just how ubiquitous soy is in every single thing we eat in the modern world. We also learned that although the FDA does not consider soybean oil or soy lecithin to be allergens, little Miss B could not handle them. Orange soda was a surprising poison for me. It just never occurred to me that there would be any need to put soybean oil in my favorite soda. Those Clif bars that I was living on because they are dairy free? Made mostly of soy protein. I still want to cry thinking about how I was hurting my poor baby without knowing it.

 I know that most people can eat whatever they want while nursing and I know that it is not my fault that I didn't know what was hurting her. But that doesn't stop me from feeling like I should have known somehow. I'm her mother and my breastmilk should be perfect for her. These thoughts are neither helpful nor really true but the feelings are there.