Cauliflower Part 2

Ok, where did I leave off? Oh, yes. Carter was sleeping peacefully . . . until 8:30. He woke up withering in pain. I brought him downstairs and he just laid his head on my chest, drew his knees up into the fetal position and kept pushing on his tummy. There were a couple, “My tummy hurts” and then it happened. A full stomach emptying vomit session. Even at a moment like this, Carter still managed to make us both laugh. “Plu-yuck! It doesn’t taste good!” Followed by, “I feel better” with a big smile on his face.  How I love this little boy!

You may be asking how I knew it was an FPIES reaction and not the start of the flu or a stomach bug. There are two things for Carter that are a dead giveaway. The first one is his mood after he throws up. He is immediately happy. He throws up and then starts jabbering away as if nothing even happened. The second giveaway is the up and down cycling his body does. Sometimes he may only throw up once, but his body cycles between a happy jabbering UP and a lethargic, unresponsive DOWN. It is as if his body is fighting itself, trying to find the balance again.

Carter ended up in the shower with Daddy. I went in to check on them, and Eric said I needed to look at Carter’s belly because something didn’t look right. When Daddy gets concerned, I know there’s something wrong! Carter’s belly was HUGE! It was descended and his belly button had gone from and innie to an outie. I have never seen his tummy so swollen! I later learned that the sweet, fermented smell of the vomit and the swollen stomach are from the candida overgrowth in his system. The very thing that we are trying to kill off using the GAPS diet. The candida literally started to ferment the offending food, producing an enormous amount of gas.

His stomach stayed that way for almost 3 days and the dumping diarrhea continued for 2. All of this from cauliflower. Less than a quarter of a cup eaten over 3 days. But there is good news!!! If we had trialed cauliflower before the introduction of the GAPS diet, I am sure we would have ended up in the ER and would probably still be there, trying to keep him hydrated. I am amazed at the difference we have seen in only 3 short weeks. The hard work is paying off!

Bye Bye Carrot. Bye Bye Cauliflower!

It’s been 3 weeks since we started Carter’s journey of healing. We have learned a lot about his body, the way he reacts to foods and the overall state he was in before we started GAPS. Before we started, he didn’t know what it felt like to be hungry. I had no idea this was the case until he started to complain about tummy pain right around mealtime. He didn’t know that the pain he was feeling was his body telling him he was hungry. He is learning now to ask for food. He is learning to be hungry.

It took me a week to make this realization. Carter has NEVER touched food that wasn’t his. He’s NEVER gone into the fridge or freezer or pantry looking for food. He’s NEVER stolen food off of someone else’s plate . . . Until last week. I found him, freezer open, eating a frozen waffle. He stole a cookie off the counter. He opened up Tupperware sitting on the island and ate some food. He took leftover chicken nuggets off his brother’s plate and ate them.  It was an FPIES disaster! Food he has never even looked twice at, he was now desperate to eat. We had a classic vomiting reaction from all the junk he got his hands on, we were all a mess. But it helped me to realize that he needed to eat much more frequently than I realized. He now eats every 2 hours, which amounts to one pound of beef and 2 small pumpkins a day!

We also had 2 fails: Carrot and Cauliflower. Carrot was an uncertain food from many months ago. It used to pass through undigested, but I was hopeful that time had changed that. I was wrong. They were causing low level inflammation as evident from his bright orange and mucousy diapers. So we pulled carrot.

Cauliflower seemed like a safe choice. Low sugar content. And he’s never had it before. 2 big pluses. We introduced it boiled and pureed. He did not want to try it. He took one tiny taste and then refused the rest, going so far as to wipe his hands off immediately if any of the cauliflower got on his fingers. He had his first serving on Saturday. Sunday I mixed it in with his beef and got him to eat some more. Today Carter was obviously hungry and sat down at the table to eat dinner. I gave him the same thing he had for lunch: Beef mixed with cauliflower. He looked at it and screamed. He refused to eat it. It took almost 15 minutes before he finally ate, due to a large addition of salt. Half an hour later, we were greeted with a #3 or poop soup, as a good friend calls it. It happened over an hour ago and the smell is still lingering in the house, a mix of cauliflower and death.

Carter had some obvious tummy pain along with an escalation of cranky’s and clingy’s today, but he’s sleeping peacefully for now. Needless to say, we have pulled cauliflower and he will not be eating it again. Makes me wonder, was the flat out refusal to eat his dinner tonight because he knew the cauliflower was bothering his tummy?

Today is Day 6!

So we have reached Day 6 of the GAPS intro diet. Did I mention that it would get worse before it got better? That’s where we have been for the last four days. Day 3 began with Carter refusing anything, including water. We ended up syringe feeding him some broth and water just to keep him hydrated. He was tired, weak and clingy. By Monday, he hadn’t pooped and it had been 4 days. It is important that his system cleans itself out. That is the biggest way the body expels all the candida (yeast) overgrowth that has taken over his body. So what did that mean? It meant an enema. Clearly not an experience anyone wants to have with a 2 year old, especially when they aren’t feeling well. It was an experience that Eric and I will never forget, but one that I hope Carter forgets quickly. It brought us all to tears. On the plus side, the enema did its job and cleared him out.

He was crying that his tummy hurt, but still refusing water. Carter normally loves water. Did I also mention that he’s stubborn? Eric suggested we add honey to his water, which is GAPS approved, but not recommended at this point in the diet. We were desperate. Carter needed fluids. I made him a bottle of water and honey. I will never forget the image of Eric sitting in the bottom of the shower rocking our little Car Bean and feeding him a bottle of honey water. It broke me and yet strengthened me all at the same time.

We continued to give Carter bottles of honey water, but started to change the ratio. He is now taking 25% water and 75% chicken broth with just a tiny bit of honey. He was up a lot last night, but it was ok because he was drinking his “honey” as Carter calls it. 2 sets of jammies, 3 soaked diapers and 4 bottles all in a four hour period. But he is drinking!!

Carter also went to preschool yesterday. He was tired most of the day and didn’t want to drink anything, but he did eat some boiled carrots! More nutrition in his body! And he loved getting the extra snuggles from his teacher and the preschool director. They have been amazing in the willingness to walk this road with us and with Carter. At every turn, when I expected them to say that we are asking too much of them, they instead pull us closer, help hold us up and   continue to persevere on this journey.

He is tolerating beef broth and meat, chicken broth, pumpkin and now maybe even carrots.  What will tomorrow hold for Carter? I do not know, but I am certain it WILL be worth it in the end!

GAPS Day 2

It has been an exciting 2 days over here! Day 1 of Carter's complete food transformation began well. He drank his broth and asked for more. It went far better than we had hoped. I was afraid he would refuse everything. I pureed some boiled pumpkin into his beef broth and he had pumpkin soup! His favorite meal of the day, and the most bizarre, was his Beef Frosting. Some of the fat from the broth began to cool around the edges of his cup, and the fat's super good stuff for him! I scooped it out with a spatula and he ate it right up! It looked like a kid eating frosting off a spatula!! New Food: Beef Frosting!! The night was uneventful and all in all it was a pretty mellow day. We even got to visit the farm that is supplying our beef.

Happy boy eating his pumpkin soup!

Today was certainly harder. He woke up refusing to eat or drink anything. He didn't want broth or soup or water. He wanted cereal and coconut milk, both of which he cannot have anymore. I tried chicken broth, which is more palatable. No go. I tried pumpkin, which he loved yesterday. Wouldn't touch it.  It was an uphill battle all morning. I decided to take the boiled liver and some other funky pieces of beef and puree it with some beef broth. I was hoping he would take at least one spoonful to get some nutrition in him. He not only ate the first spoonful, and then a second and a third; he devoured almost half a cup! New food of the day, Beef Pate! I am not sure yet, how this will all sit with him tonight. He is experiencing die off symptoms, as his body begins to rid itself of all the toxins and funk that have kept him from thriving. He's had headaches all day and just wanted to be held. The hardest part was hearing him say, "I'm hungry. I want eat".Yummy beef pate!

I knew these first days would be tough, but I also know that he's eating real food and as a great friend said today, Short term  for a lifetime of eating. I bought several new cups and even a bottle,  to find a way to get him to drink and stay hydrated. We even found one with his name on it! And I think my hands will smell of broth for months!

We had a warm baking soda bath, read a story and had some real giggles! Let's see what tomorrow brings!

Going GAPS

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.

Crazy!

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.

Formula No More

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.