A Long Time Coming... part 1

I think about updating this blog all the time. With everything we've been going through for the last 10 months, it feels like an entire lifetime since I've posted. This post has been a work in progress for months. Let me start from October (the last time I posted)...

In October, B started an actual daycare. Our in home nanny could no longer care for her, and needed to move on to a full time job. My husband and I were extremely worried about how she would do in a daycare setting. After all, it's not like she can avoid people and foods for the rest of her life. We knew that snack time, lunch time, and sticky fingers would pose a risk, and did our best to find a daycare that could work with us. We were very fortunate to have found a brand new in home daycare run by two sisters who were just coming out of careers as pediatric medical assistants. They found they loved playing with the children and making them smile, much more than weighing them and making them cry while holding them down for vaccinations. The sisters turned out to be miracle workers. I can not imagine how much different our life would be right now without this daycare. Within days of starting the daycare, B started napping easily... in a well lit room. As it turns out, she didn't need the black out curtains, or the box fan running to help lull her to sleep after all. The sisters were knowledgeable about food allergies, and prepared for the worst. They worked with us to allow us to bring all snacks, breast milk, and lunch in a cooler every day. They would ensure that her high chair was disinfected from any possible cross contamination, and that she would be the only one that slept in her bed. Cleaning products would be allergen free, hand soaps allergen free, and she would have her own designated bottles, cups and utensils.

As time went on, B grew more social, and looked forward to playing at daycare with the sisters. She started putting herself to sleep for nap time easily. This allowed us to make the transition from a nightly routine of patting her back to sleep for 30-90 minutes in the dark, to putting her to sleep in the pack and play at the beginning of the night. Our new routine began in February, as B transitioned out of her side-car crib, and into the pack and play at night at home. It went surprisingly well. After a day or two, she understood the routine had changed. We no longer had to wait up until 11pm or later for her to start crying before we finally could come to bed when I went in to "rescue" her and comfort her back to sleep. (We were always so afraid that going to bed we would wake her while getting in... so we would just wait up for the first time she inevitably woke up). This grew into her sleeping longer and longer at the beginning of the night. I would still bring her to bed with me once she woke, but we were all starting to get more sleep. A few times she even woke and put herself back to sleep! This felt like heaven after 22 months of constant night watch.

By her second birthday, she had finally slept through the night a handful of times. It gave my husband and I hope that she might start outgrowing some of her sleep issues. And it began the process of night weaning. After turning 2 in April, she was no longer nursing during the days. In October I finally stopped pumping at work. We successfully introduced goats milk, which alleviated the burden placed on me to nurse. In the spring, she had switched to drinking raw goats milk and almond milk without carrageenan in it during the days at daycare. Almond milk was a blessing, as it was easily $15-20 cheaper than raw goats milk per gallon.

Not everything was all roses though. We failed a salmon and an orange trial during that time, which meant that I had to eliminate those from my diet too. I wasn't doing a traditional elimination diet. Instead, I had been eating what I wanted, and only eliminating known fails as we encountered them. In May, we also lost shrimp, food dye and watermelon in one fell swoop. A birthday party for my nephew at my parents house put B in contact to all three on the same occasion. It was heartbreaking to jump to 10 failed foods. We were now at the point of which children start to begin outgrowing FPIES, and here we were losing 3 more foods. At this point, she could no longer have rice, turkey, coconut, cows milk, carrageenan, oranges, salmon, food dye, watermelon, or shellfish of any kind.

None the less, we chugged on, and at her annual follow up appointment with her allergist, we finally had the discussion about re trialing failed foods. The game plan is to retrail her foods in order of least symptomatic to most symptomatic, with one retrial per month pending no other failed foods in between. This would mean 10 months to retrial everything, as long as no new fails or old fails occurred again. This, is literally my worst nightmare. Intentionally give B something I know makes her sick? That doesn't sound like my idea of a good time. We had almost started to feel normal. Our new normal was getting easier. I was managing to make the same meal for each of us at dinner, and rotating through a diverse menu of foods that seemed to be healthy. Her sleep was getting better and better, and now we were getting more nights where she slept through than not! To be honest, retrials scare the hell out of me. But fear or not, we have to retrial at some point, and with her losing more and more foods, it was time to see if any of the old ones were starting to clear up. This was a good thing... it forced us to retrial salmon, which ended up being her first retrial pass! We were back down, with 9 to go.

Last month we had her first dentist appointment. Since B was a gummy bear up until that point last year, we figured 13 months with teeth meant it was time for a check up. What began as a regular appointment for a toddlers first check up, began the start of another major life change for us. We found that with the gradual switch to almond milk, and no other major sources of calcium, that B's teeth were starting to decay. She has 4 cavities on the back of her top front teeth. This in and of itself, is heartbreaking to any parent. My barely 2 year old child has cavities! We know it's not from excessive sugar or not brushing, as she doesn't get juice or sugar like most children. FPIES ensured that those would not be part of her childhood. Upon further research of cavities in toddlers, we discovered that toddlers who subsist on almond milk often have early tooth decay. Almond milk contains phytic acid, which blocks the bodies ability to absorb nutrients. So the "50% more calcium!" claim on the box is misleading if the other aspects of the milk keep you from benefiting from any added calcium.

The worst part is, the dentist wanted to do the fillings under anesthesia at the local children's hospital. Due to her age, and her FPIES, the complications of allergies makes it much harder for a dentist to treat such a small child with that many cavities. I won't lie, I had a full blown anxiety attack. I broke down, I cried, I felt like my heart was going to explode from racing so hard. The side effects and lasting impact of anesthesia in children under the age of 4 are significant. They can be long lasting, and cause significant issues with language and intelligence development. These were not things I was comfortable with.

In my quest to find an alternative, I scheduled a second opinion appointment with another pediatric dentist (out of our network) and started searching for ways to stop cavities in toddlers. It was then that I ran across the GAPS diet.