A Poison Plan

FPIES presents so many situations that I never would have considered.  2 days ago Carter was in the garage and got hold of some chemicals. In his obsessive desire to eat anything and everything, he ate some. How much? I wasn’t sure, but it obviously didn’t taste good and he spit it out. We quickly consulted the product about what to do in case of ingestion.  The product said not to induce vomiting and to give the 2 glasses of milk or water. I washed his mouth out and got him to drink some water. I don’t think he swallowed any and is doing just fine.

But this got me thinking, what are the common recommendations for ingesting chemicals? After some research, there are a lot of recommendations to consume 2 to 4 glasses of milk and eat bread. A simple solution for your average kid, but a terrifying prospect for an FPIES or other food allergic child. It then becomes a game of the Lesser of Two Evils. What will the chemical do to my child? I know what consuming that much milk or bread will do to him; weeks of pain,  loose stool, rash, inability to absorb nutrients, weight loss, sleepless nights, respiratory infection, the list goes on and on. Certainly some chemicals can cause serious side effects as well, but a lot of these household products expect that you treat these things at home, that they aren’t too serious. For us, they would be very serious. I think our only choice would be to call an ambulance and have him admitted so they could pump his stomach.

Until a couple days ago, I never even thought to have a poison plan for Carter. I thought I’d just contact the Poison Control Center and follow their lead. Now I realize that Carter’s situation is outside of that box as well. We have been walking this maze for almost 3 years, and I am still learning as I go.

All products have an MSDS, Material Safety Data Sheet, and by law they must be available for free. You can find them by searching “MSDS” and the name of the product in your internet search engine. The Poison Control Center is available 24/7 at 1-800-222-1222. They also have an iPhone app that will connect you directly to the poison control center with the push of a button. You can find the app by searching “poison help”. The app is free. Do you have a plan for your child?

A Probiotic Update

Sorry I haven’t updated in awhile. We’ve been plugging along here. We had to pull spinach because his tummy just isn’t ready for it. He can only do it in small quantity every once in a while. We FINALLY got him started on a probiotic, which will help his body fight the bad bugs in his intestinal system and build up more good bugs. We are moving very slowly, but his body is adjusting well. We used the recommended dose of one capsule and spread it out over 8 days.  We have seen some symptoms: eczema flares on his face and little red painful bumps sporadically spread across his body. The worst of these has been the rash that’s developed from his urine. The areas where his pee comes in contact with his skin turns into small red welts. On bad days, it hurts when he pees and his entire groin is covered in rash. We’ve made great friends with Aquaphor, or as Carter calls it, Butt Jelly! As difficult as this is to watch, it really is a good sign. It means his body is ridding toxins through his urine. It means the probiotic is working. It means we are making progress.

Our other big news is that Carter has hotdogs!! We spend last Saturday making Carter homemade sausages, which he calls hotdogs, a snack just like his brothers. We stuffed them with safe ground beef, a little onion and some salt and pepper. Then Daddy smoked them, so now Carter has smoked hotdogs. He doesn’t appear to be tolerating the casings, which were pork that we picked up from the local butcher shop, so I’ve been removing them before feeding him. Either way, he doesn’t care. He loves his hotdogs!

Ghee and Guilt

I should be napping right now.  Carter was up all night last night with an all too familiar cough. The one that cannot be treated, the one that causes him to gag and throw up, the one caused by a reaction.

In a moment of weakness, I gave Carter ghee or clarified butter, mixed with a little honey. It was about a teaspoon, and he loved it. When you clarify butter, you removed all the lactose out of it and are left with pure milk fat. A lot of people do well with dairy in this form, even though they can not tolerate it in other ways.

I was looking for more fats to get into his body, something to help him feel full. The screaming for food and stealing and eating food off the ground, wore me down.  But we now know that Carter is not ready for dairy and won’t be any time soon. We also know that we need to start a probiotic, and I will order Gut Pro as soon as it’s back in stock.

But what about the guilt? What do I do with that? I have a very sick little boy with deep circles under his eyes and rough red cheeks and a cough that makes him cry. Someone told me today that guilt isn’t always valid, and that’s true. But it sure is easy! It’s easy to wallow in the guilt and the why me’s, it’s much harder to dig down into yourself and find the strength you need to overcome, to keep fighting, to keep living.

I have been waiting for this to go away. To get a knock on the door with a certified letter that says “Carter can eat anything now. He’s all better”.  I haven’t wanted to acknowledge the truth. And without the conversation I had yesterday, Thanks Nichole, I don’t know when I would have admitted the truth.

I have a sick little boy, a chronically ill little boy and he’s going to be like this indefinitely. He and I are on a journey together and we are bound to take wrong turns and I need to be ok with that. There is no map for us. No one has journeyed this path yet. We are the pioneers traversing this new land, living on little more than fear, adrenalin and hope. It is no longer about the destination because we don’t know where we will end up or when we will settle down.

The important thing is that we are moving, even if it’s backwards sometimes, we are still moving. The fear has not paralyzed us.  The adrenalin and hope push us onward. We are still moving and if we are still moving, then we are still alive.

Why Am I Doing This??

Why am I doing this? I’ve asked myself this very question over and over again. There are so many, many reasons not to do this crazy diet called GAPS. The work, the smells, the mess, the fear, the heartache, the sourcing of foods, the lack of mainstream medical support. Did I mention the smells? There are so many reasons to leave GAPS and go back to what we were doing before, when my son could have chips and cereal and candy and muffins and crunchy yummy goodies. Every day, at least 3 times a day, I question the path I have chosen to take, the path of healing. Every day I feel my strength waver. Every tantrum where Carter cries for food. Every time he eats yet another unsafe food left out on the counter or stolen from the garbage. Every time he asks, “What me having for dessert mommy?” Why am I doing this?

Christmas night I was talking to Carter’s Great Aunt and his Grandma, who see Carter on a regular basis, but who do not read the blog. They haven’t heard me talk about the scariness of watching Carter wither away or very real truth that Carter was dying a little more every day. It’s much easier to type those words than it is to speak them which is why I started this blog in the beginning. I still can barely utter the words, Carter was dying, but I can type them. So they did not know how dire the situation was because I didn’t talk about it. When they asked how he was doing, I always said he was ok.

So as we were sitting around the Christmas tree watching Carter play with his brothers and his cousins, his Aunt commented on how good Carter looked and how happily he was playing, that his eyes were clearer and shining, that his face was full and pink. And then his Grandma said something that still brings tears to my eyes. “He’s not lethargic anymore and his eyes aren’t sunken in like they used to be. He looks so much healthier”.

They have seen the difference in this little boy. They have seen him transform into a healthy, vibrant toddler. This is why I am doing this, not just to heal him, but to save his life. It was by far, the best Christmas present of the night.

Before GAPS Feburary 23, 2011

Before GAPS June 18, 2011

Before GAPS March 6, 2011
Dark circles and puffy eyes

First Day of GAPS October 28, 2011

After GAPS November 25, 2011

After GAPS Decmeber 1, 2011
The Dark circles and puffiness are gone!

The Pumpkin Project

After some experimenting, and some great suggestions, Thanks M!!, I finally have a pumpkin processing system that works! Wait, do you know about my pumpkin craziness? I bought almost 90 pumpkins several weeks ago. Pumpkins are only available fresh until Christmas, at the latest. Seeing that they make up half of Carter's current diet and canned pumpkin while having less nutritional value, is also at risk for soy contamination due to the can linings, we needed pumpkin!

A Truck Full Of  Organic Sugar Pie Pumpkins

 Step 1: Roast the pumpkins whole! This saved me a lot of time, as I was cutting them first. And if you've ever tried to cut one of these suckers in half, well it's not a fun task! I coated them in coconut oil. Just a tiny amount. I put too much on the first time and it melted of and smoked up the oven. It needs just a light coat.
Edited on Feb.15, 2012: The coconut oil is optional. I have been doing it sucessfully without this step.
Line a cookie sheet with foil and place it on one rack to catch any juice that make coat out.. Place the pumpkins on the next rack, directly on the rack, and turn the oven to 350. Roast them for 90 minutes. At least for my oven anyway. Once they've cooled enough to touch them, take them out of the oven.

Roasted Pumpkins. So Pretty!

 Once they are cool enough to handle, remove the skin.You can tell they've cooked long enough because the skin separates from the flesh. Makes it super easy to remove the skins!

 Next, slice the pumpkins in half. They cut like melted butter. No fighting them or worrying about losing a finger. The seeds scoop right out. Place them in a bowl and save them for roasted pumpkin seeds or pumpkin seed flour.

This is the what the pumpkin looks like once the skin and the seeds are removed. The flesh is nice and soft all the way through.

Next, chop up the pumpkin into smaller pieces to fit in the blender, or use your hands. At this point, you're covered in pumpkin anyway!

 I add a little water and blend away!! Carter won't eat the pumpkin puree if it's the slightest bit chunky or stringy, so I puree it until it's nice and smooth.

Presto!! 10 bags of pumpkin puree from 6 pumpkins!! Ready to go in the freezer or into Carter's tummy!

One note about picking your pumpkins, don't skimp! These were organic sugar pie pumpkins from Whole Foods. I originally bought cheaper pumpkins, but they didn't have nearly as much flesh. These have almost double the flesh as the ones I previously bought. Ask your produce department to cut open a pumpkin for you (which should be comical to watch) and check the thickness of the flesh. The thicker the flesh, the better the taste!

I've got 6 more pumpkins in the oven, and 5 more crates outside, so if you see orange in my hair or on my shirt, my pants or my shoes, don't be surprised!!

Neck and Neck

We have 2 new safe foods! Butternut squash and Venison! In my desperation to find another veggie before the pumpkin season was over, we tried butternut. Carter loves it and has declared it pumpkin with honey. So now we have 2 safe veggies, one of which I can get year round. I have even found the butternut in the freezer section. We have received the venison from family and friends and are so fortunate to have meat for carte that is truly wild. We were also given Pheasant and Goose! Two points for Carter!!

We tried chicken broth again and his system still isn’t ready for grain fed broths. The chickens were soy and corn free, but still fed grain. Carter ended up with upper respiratory issues that are finally starting to resolve themselves. One point for FPIES!

We have almost 300 pounds of pumpkin in our garage waiting to be cut, cleaned, baked and pureed. The produce manager said that he was only able to get them until Christmas last year, so we bough them out. At Carter’s current rate of 2 pumpkins a day, we needed all we could get. I call this one a draw. We were lucky enough to find pumpkin locally, but it’s a lot of work to process that much pumpkin.

Our kitchen is still on lockdown. Carter is no longer allowed to be left alone in the kitchen, even for a minute, even if I think it’s safe. He’s gotten very good at moving very fast and very quietly to get to food. He moved the stool, chair and bar stool over to the pantry and chowed down on some yummy cheese filled crumble coffee cake. All this within 5 minutes. I took this picture after we'd cleaned him all up. He is a sneaky one!

His body hasn’t had sugar in over a month and he didn’t know what to do with it. He ended up with a “Sugar Rage”, screaming and tantruming and completely out of control. Once that subsided, the tummy pains, loose diapers and gas started. It took 5 days for that to clear. He has also discovered the garbage can and sneaks food out of it. The last one was peanut butter. It caused enough of a reaction to move peanut butter to the unsafe list, it bordered on IgE. He had respiratory symptoms within the hour that lasted through the night. The horrible, drowning cough . . . It was organic, natural peanut butter so we won’t be trying peanuts anytime soon! Two points for FPIES. Carter – 2, FPIES – 3.

When Carter is eating what he is supposed to, we’ve noticed a wonderful change; HE TALKS! He talks in full sentences with new words every day and concepts that just blow me away. We asked him the other day what he wanted from Santa. Toys? Books? Movies? No, he wants Santa to come for dinner and sit right by him and he also wants a hug and a kiss from Santa. It truly is a pleasure to hear his little voice and it makes me fight that much harder to make sure our home is safe for him. One point for Carter. Carter – 3, FPIES – 3.

And that really is where we are right now, Carter and FPIES, neck and neck in the war to keep him healthy. Some battles we win and some we lose, but we keep fighting, determined to heal our little boy!

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!