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!

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.