After 575 days on GAPS, Carter is offically healed. Now he eats everything!
After 575 days on GAPS, Carter is offically healed. Now he eats everything! Well almost everything! He's still eating a real food/non processed diet for the most part and we will stay away from soy in all forms and cauliflower, mainly because Mommy is still scared of those foods. We are sticking with the 80/20 ratio of foods because now he can indulge in a cheat every once and awhile and he's just fine!
Saturday, October 29, 2011
Friday, October 28, 2011
It’s been a while since I last updated. There have been a whirlwind of changes recently and not much time to settle down from it all. There has been very little help from the medical community regarding Carter’s FPIES and that’s for 1 simple reason, there is not enough known about atypical FPIES and how to help children with it. I have done lots of reading and research trying to find a way, not only to feed him, but to heal him. Time and again, I kept coming back to the same answer, GAPS or Gut and Psychology Syndrome Diet. Some amazingly brave FPIES moms have already put their children on the GAPS diet, and have seen some amazing results. One mom had only one safe food for her twins, and in 6 months, they were eating almost 30!!
What is GAPS? In short, it is a diet that allows for the body to heal itself using the correct foods in the right combination. It heals the intestinal tract and the leaky gut that makes Carter’s body react to foods. His gut is in a weakened system that allows particles of food which are not yet fully digested, to enter into his blood stream. This causes his body to react to these particles as foreign invaders, similar to a virus. The weaker his system gets, the more foods he reacts to and the less likely he will be to EVER eat normally.
Dr. Natasha Campbell-McBride is the founder of this diet and path to healing. There are 6 stages to the introductory portion of this diet before Carter will be able to move onto the Full GAPS Diet. A lot of foods are removed from the diet in order to promote healing. Starchy foods such as potato and corn, all forms of sugar (except honey), grains including rice and all processed foods. This is the majority of Carter’s current diet. So what does that mean? It means it all went in the trash last night. All of it. If it wasn’t a GAPS approved food and it was on Carter’s shelf in the pantry, it went in the trash. What did that leave me with? Nothing! It is hard, but it is the only way we will heal Carter.
The first stage for Carter involves only the consumption of meat and bone broths and small amounts of boiled pumpkin. Why pumpkin? It is one of Carter’s current safe foods and also one of the foods allowed in the first stage of the diet. I have made beef and lamb broth and currently have a pot of chicken broth simmering on the stove. And the meat has to be soy free in order to make sure Carter doesn’t react to the trace amounts of soy from the feed. So I now have a freezer half full of beef bones just waiting to make the next batch of broth.
How long will the first stage of the diet take? I am not sure. It all depends on Carter. There are more veggies that we need to introduce as well as the meat itself. For now, we focus on the broth, getting as much into his system as possible, 30 to 40 ounces a day would be wonderful. The more he takes, the faster the healing process.
Now, you probably think this is crazy. Meat?!?! That’s the exact opposite of FPIES friendly. Broth is actually one of the most nutritionally dense and easy to digest forms of nutrition available.
But doesn’t this mean a lot of time in the kitchen? Making all that broth and nothing processed or store bought? And won’t Carter be upset that all his foods are gone? Won’t he starve? Are you crazy?
I have asked myself all of these questions and more. I have turned my back and run from the idea of GAPS for months, looking for another answer, only to find myself tripping over it again and again. Carter reacts to his formula, to the 10 formulas we have tried. His accidental ingestion reactions have gotten worse. GAPS is our answer. The incredibly steep learning curve, the sacrifices, the expense, the hours of food preparation will all be worth it. This was not a decision that was made lightly or easily, but we believe it is the right one for our little boy.
Today is Carter’s first GAPS day. He helped us throw away all the yucky food last night, including the Crayola colored pencils (which contain soy and were causing low level reactions). He drank 10 ounces of beef broth for breakfast and another 10 ounces for lunch along with some boiled pumpkin. After he finished his first serving of broth for lunch, he asked for more. He is doing so much better than we anticipated and his brothers are doing a great job of encouraging him.
As we move through the intro diet, I will post updates of Carter’s progress. I hope you will see the transformation right along with us. I hope you will witness the changes as we go from an under-nourished, cranky, clingy, always hungry little boy to a child who knows what it is to be full and who finally understands and is able to enjoy a day without pain.
Wednesday, October 12, 2011
Crazy! That’s the only word to describe what we did today. Crazy! We took the boys out for dinner after a great afternoon at the zoo. We went to Chick-fil-A for dinner. I looked at the ingredient guide for the waffle fries and it said they were cooked in Canola oil. Carter can have that! Then I looked at the ingredients, no rice starch or milk or any other coatings on the fries. There were a couple chemicals listed, but nothing that jumped out and said BAD!! So we gave him fast food French fries. Fast food French fries. From a fast food restaurant. Like I said, Crazy!
Carter sat anxiously waiting for the food and chanting French fries! French fries me! He’s eaten them at home, but we haven’t allowed him to eat anything from a restaurant kitchen in quite a while. There are so many unknowns. Cross contamination. Mislabeled foods. Mix ups in the kitchen. It’s a scary world in the food industry kitchen.
When the food arrived, Carter was in such a hurry to eat them. He cried because we weren’t moving fast enough. We let him eat four or five waffle fries. He had some strawberries and apples from a fruit cup and a juice box of apple juice. His first Dining Out meal. He was just like everyone else for that one meal, that half hour. It was almost like he didn’t have FPIES.
As fun as it was for him, it’s now ridiculously scary for me. The potential for a reaction is there. The fear is there, but there is also hope. Hope that one day, he will be able to eat just like everyone else. Right now he’s sleeping quietly, but my mommy ears will be working overtime tonight. Let’s hope for a silent night tonight.
How do you get a 2 year old to eat? There are lots of books on the subject and lots of methods. But how do you get an FPIES 2 year old to eat? When food hurts, what incentive do you possibly have to get them to take the nourishment they need?
When Carter began to refuse and self limit his formula, we tried everything to get him to drink. What ended up working? Honesty. We were honest with Carter and I told him that if he didn’t drink his formula, we’d have to go to the doctor and he’d have to get pokies (shots). “No. No pokies”. And he drank his formula. Was that the best way to get him to drink it, maybe not. But the all too real fear of a feeding tube scared me enough to try.
After a huge debacle with our formula order on Ebay, which never arrived, and with Carter being off formula for over 2 weeks, I finally got him to take some unflavored Elecare. I made him a smoothie one evening to calm his hunger. I put 2 scoops, mixed with coconut milk, blueberries and strawberries. It made a 12 ounce smoothie. He drank about 4 to 6 ounces and then peacefully went to sleep. Exactly 3 hours later he was up, crying owwie poop! This was the first time since I don’t know when, that he pooped in his sleep. He was up from 10:30 until 3:30. Reflux, gas, stomach cramping and pain, cold and clammy. The next day he slept a lot, which isn’t surprising considering the lack of sleep.
So what do I make of it? An FPIES reaction exactly 3 hours after ingesting a small amount of formula. It is a noted food trialing technique to try a food, pull it for 2 weeks and try it again. The 2 week window allows the body time to decide whether the food is truly an invader or not. If the body deems it an invader, the reaction is often worse after the 2 week wait, than it was before. So now we have a confirmed FPIES reaction to formula.
The following night, Carter had a descended stomach, woke up with a fever and vomited all his food from dinner 6 hours earlier. He was shaking and shivering and coughing. It was the all too familiar reactive cough we’ve had before. It seems that the reaction lessened the strength of his immune system as well. These could have been symptoms of a cold or the second wind of the reaction. It’s hard to tell.
Carter has been off all formula for almost a month now. It has been a long hard road, but we have had some positives. I began to educate myself on the GAPS diet and the benefits of feeding Carter homemade meat and bone broths. So far, I have made him both lamb and beef broth and he’s had them without any FPIES reactions. Yesterday was a big milestone for us. Carter actually picked up his bowl of beef broth and drank it! No fighting or begging or mixing it with other foods. He’s also making some progress in the potty training department! For every setback, there’s a victory. It may only be a small victory, but it deserves all the celebration and fanfare of the biggest victory.