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!

Thursday, December 29, 2011

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!

Wednesday, December 14, 2011

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!!

Wednesday, December 7, 2011

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!

Thursday, November 17, 2011

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!

Monday, November 14, 2011

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?

Wednesday, November 2, 2011

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!

Saturday, October 29, 2011

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!

Friday, October 28, 2011

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.

Wednesday, October 12, 2011

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.

Tuesday, September 20, 2011

Insect Repellent. Formula. Preschool.

Insect repellent. Formula refusal. Preschool and Ms. B
Insect Repellent
It’s been a busy month for Carter.  We went camping the last weekend in August. The weather was perfect but the mosquitoes weren’t. I wasn’t prepared for a bug problem since there weren’t any last time we went, but they were loving Carter. The local store had an all natural insect repellent whose main ingredient was citronella. I weighed the options and figured a reaction through skin would most likely be delayed and wouldn’t hit until we were already home. The alternative was a little boy covered in bug bites.
We applied repellent, careful to keep any from getting into his mouth. 2 hours later, like clockwork, he started to get cranky and irritable. Then his fever shot up.  His heart began to race. His breathing was quick and shallow. The reflux kicked in full force and he had several vomiting episodes. These symptoms lasted all night. By 7 am, he wasn’t any better. Carter and I came home, while the rest of the gang finished up the camping trip.
Carter napped from 1:30 to 5 pm and then slept from 7:20 to 8:30 the next morning. Lesson learned: Skin reactions can happen as quickly as ingestion reactions.
Formula Refusal
We are also battling a formula refusal. Carter usually drinks 24 ounces of formula a day. He went on a 5 day formula strike. By the fifth day, he barely had the energy to walk.  He finally laid down on the bed, asked to be covered with his blankie, and gave in to the formula consumption, drinking a full 6 ounces. It seemed to be his last resort. He is still not back to regular consumption amounts and we are working on finding a safe multivitamin and entertaining the idea of making our own coconut based formula.  I am wondering if the soy oil in the formula has reached a build up level that his system can no longer tolerate. More guessing. More detective work.
Preschool
Carter started preschool on August 23. He goes 2 days a week from 11:45 to 5 pm. I pack his lunch and his snack and he has goodies in case there is a special treat in class. He hasn’t cried at all when we drop him off. In fact, he cries when we pick him up! He genuinely loves going to school and it was one of the best decisions we have made for him.
When I picked him up on Thursday, he started telling me all about Ms. B. I asked him who Ms .B was and he said, “Me teacher”.  They are taking very good care of him. And we couldn’t be happier.
Ms. B got her first real FPIES experience when one of Carter’s classmates brought cupcakes for everyone.  Carter got to have one of his safe lollipops, but he kept asking for and pointing to the cupcakes. It was a hard situation for her, having to tell him no over and over and redirect his attention. When she relayed the story, she got tears in her eyes.
Just as Carter affects everyone he meets with his warm smile and contagious laughter, FPIES leaves its own mark. It is not just family that struggle with FPIES and it’s not just family that make an FPIES child’s care their priority.  We are all in this together.

Tuesday, September 6, 2011

Men and Sex. Women and Worry.

Today’s blog is dedicated to all the men out there: dads, uncles, cousins, grandpas, nephews and friends. I hope this will help shed some light on the thoughts of a mother.
Thanks to the wonders of science, we know that men think about sex every 7 seconds.  Every 7 seconds! That’s pretty much all the time. Science has also told us that they just can’t help it. There is nothing that can be done to change how often a man thinks about sex.  This statistic is just an average. I bet if you asked a man, he would say he thinks about sex even more than that, if he’s being honest. Now if we tell a man, “Hey, don’t think about sex. Stop. Think about something else”. What happens? He’ll think about sex even more.
OK, now that we’ve established that and we are all in agreement, I want you to try something. Let’s take this fact: Men think about sex every 7 seconds, and lets transform it to apply to the one thing moms think about every 7 seconds. Anyone have any guesses? Anyone?  We are replacing SEX with WORRY.   So what do we get now?
Moms worry every 7 seconds. Yep, it’s true. Every 7 seconds we are worrying about something.  It is a constant dialogue going on in our minds. We cannot shut it off. We cannot make it go away. And if you tell us not to worry, what happens? We worry even more.
What do we worry about? EVERYTHING. Are the kids happy? Did they get enough hugs before they went to school? Do they like it at school? Are they making friends? Did I turn off the coffee pot? Did I close the garage? Did I lock the door? Is there a doctor’s appointment today or tomorrow? Did I brush my teeth? When was the last time I took a shower? Does the baby have a clean diaper? Did I pack enough formula? Did I make enough for dinner? Did I kiss my husband goodbye this morning? Did I brush me teeth before or after I did that? Do I need to shave? Do my kids know how much I love them? Does my husband know? Is that bump a rash? Does my child’s head hurt? Why does that lady keep stating at my child? Does she think he’s too skinny? Is my little one eating enough? Am I spending enough time with my kids?
All those thoughts took place in less than a minute’s time. No, really. We worry that much.  A woman cannot help but worry, and a mother losses full control of her worrying ability once her child is born. A mom worries about the little things. A mom wakes up at 2 am and worries about whether she packed her child’s toy for show and tell. A moms last thought before she goes to bed is the worry that her kids are either too hot or too cold.
So men, do me a favor. For the next hour, pay attention to all the times sex crosses your mind. On average, you will have thought about sex over 500 times. Now pretend you’re a mom. Each one of those 500 thoughts about sex for you, was a worry for a mom.  Just remember this, the next time you start to tell us that we worry too much. We can’t help it anymore than you can.

Wednesday, August 31, 2011

Announcing The FPIES Foundation

Over two years ago, we began the heartwarming journey of expanding our family from 4 to 5. it was a time of excitement and anticipation. After Carter was born, we were soon pushed onto a different path entirely, the path of chronic illness, the path of FPIES.

It was a lonely, overwhelming and isolating experience. No one knew much about this diagnosis . Doctors couldn't offer us much help and we continued to watch our littlest boy suffer. Yet, through this maze, we found support and help from parents struggling with the same unexpected path. Together, with this amazing group of FPIES parents, a foundation has launched to make sure that no one is eve alone again in this FPIES journey, to spread awareness to doctors everywhere about the realities of this illness so that no child is ever misdiagnosed again and to give every FPIES child a voice. 

I want to thank you all for the support you have given us throughout the last two years. There are no words to express out gratitude for all you have done. We invite you to visit our website, our foundation, our hope.

To those of you who have found my blog because you were sitting at your computer searching for any link, any commonality that would help you find some answers, some guidance, some support; this foundation is for you. Thank you for inspiring me and reminding me why this foundation is so important. There is a support forum on the foundation website and I invite you to log on and connect with other families just like you.

I would like to invite all of you to join the forum. It is not just a place for parents, it is a place for anyone riding the FPIES rollercoaster, and I know you've all experienced the ups and downs right along with us!

http://www.thefpiesfoundation.org/

The Dyck Family: Eric, Rebecca, Tyler, Caleb and Carter too!

Tuesday, August 9, 2011

The Last Month

We have learned so much in the last month about Carter and his FPIES.
We knew he could not eat green beans, but we discovered that he cannot even touch them.  Green bean “juice” on his hands, hand rubbed eye, eye swelled up and had greenish discharge. Benadryl helped clear that up. Leads me to believe he may have an IgE allergy to green beans, but our local allergist does not have a test for green bean. Our only option is a 3 hour drive to Stanford.
Random rash all over his face, chest and back. Still not sure the cause. It could be the yummy Real McCoy’s Shoestring potato chips. I am still waiting for a call back regarding their cross contamination practices. Or it could be eczema. It has gotten much better, for now.
Skin Prick allergy test done for egg showed a reaction to the control, which is salt water.  The egg may have been a slight positive for an actual IgE allergy, but since the control reacted, the whole test is suspect. The only choice we have is to retest, but that’s more discomfort for Carter.  
Are we developing IgE allergies now? Will this be our next battle to add to this ever changing food war?
We are trying to get Carter to take a probiotic on a regular basis. Of course he does not like the flavor and I cannot find a way to make sure he gets all of the probiotic powder required for each dose. I am going to try to make homemade coconut milk yogurt, as long as this container of coconut milk does not have mold growing in it.
On the upside, I now know how to make Pumpkin pudding and Carter loves it! He has another food that he gets excited about and one that I know is safe. For every defeat, there is an uplifting triumph. 3 cheers for Pumpkin Pudding! Hip Hip Hooray!

Little Dried Up Bits of Evil AKA Raisins

Thursday, August 4 began like any other day, until I found Carter with a box of raisins. We know he can’t eat raisins because his body cannot break them down, but he’s never had a severe reaction. His mouth was full of those little brown things. I knew he had eaten some, but I had no idea how many. And now the waiting game began.
The rest of Thursday progressed without much notice. Friday morning started with a pretty normal diaper. There was one raisin incased in mucous. But that was it. I began to feel hopeful that this was a sign of his body improving and overcoming FPIES. Oh, how wrong I was! We stayed busy all Friday afternoon at my parent’s house.  We headed home around 2 pm and that’s when I noticed the first sign that something wasn’t right. Carter fell asleep in the car and lost all color. His face was pale and his lips were white, not their normal rosy pink. When I took him out of the car, his body was limp and he was hard to rouse. I assumed it was from a long fun filled morning and put him down for a nap in his bed.
He woke several hours later and although he was a little more cranky than usual, the evening progressed normally. There was an increase in his reflux, which we haven’t seen in months, but he didn’t appear to be in pain. He went to bed at 7:30 and slept peacefully until midnight. Shortly after I fell asleep, he began to cry. It was the cry that covered my body with goose bumps, the one that says, Mommy, something is wrong. I went in and found him lying on his side, screaming. His reflux was out of control; he was gassy and seemed to be having waves of severe stomach cramping and pain. He was clammy and cold, and he had that all too familiar reaction smell due to the increase in sweating.
Carter and I were up together for 3 and half hours. All he wanted me to do was rub his back. I couldn’t find a position that was comfortable for him. Every time I tried to hold him, Carter would squirm and wiggle and fight. There was nothing I could do to make the pain better.
The next morning, Saturday, brought a cranky little boy. The mix of disturbed sleep and pain made for a rough morning. We had a diaper FULL of mucous, and 2 more raisins.  Saturday, mid afternoon, Carter’s reaction symptoms took off. He had a screaming vomiting episode followed by a decrease in body temperature. He was 96 degrees and his normal body temperature is always 98.6. His temperature is always as normal as can be. He lost all color in his face and was cold and clammy. He cycled through this pattern all day. He had a pretty good night’s sleep on Saturday night, followed by an almost 4 hour nap on Sunday, his body’s way of trying to recover.
I went back and forth all day Saturday about whether to take him to the hospital, but as he reached the beginning of the downward spiral, he managed to pull himself back up again. It is no wonder that he slept for 4 hours on Sunday, his little body was exhausted.
So what does all this mean? Simply stated, it means that Carter went into the early stages of shock.  He never lost consciousness, but he displayed many of the signs of early shock: excessive sweating, low body temperature, lose of color, rapid breathing and cold extremities. It also means that his reaction to raisins has gotten worse, not better. His body has become more sensitive to these foreign invaders.
We learned something new through this reaction.  The onset of vomiting and shock doesn’t just start 2 to 4hours after the ingestion of a trigger; it can start very slowly, almost undetected and build up to 48 hours later.  Not only is this something new for us, but it is something relatively new in the FPIES world. But it did happen here, in our home, with our little boy.

Thursday, August 4, 2011

DING!!

DING!! FPIES DONE! In the past week, I have talked to two different friends and fellow FPIES moms on opposite sides of the country. Both of them were told by medical professionals that FPIES ends at 2, so they just needed to bide their time until their child would be able to eat a normal diet. This train of thought is not in keeping with the latest medical research and information. There is no guaranteed age where FPIES magically disappears.  But if these medical professionals are correct, and not just sadly behind on their reading, then why are so many FPIES kids still reacting well beyond their second birthday?
Carter is 26 months old. He’s 2 years and 2 months old. We aren’t showing any improvement or tolerance for new foods.  And then it hit me, Carter’s FPIES timer must be broken!! I haven’t heard it go off, so that must explain why he doesn’t fit into the normal FPIES category. So I searched the internet for a new FPIES timer. You can find anything on the internet. No luck! It looks like they don’t make FPIES timers. So then I thought we could fix his because it is obviously broken. My husband is pretty darn handy. He can build computers, fix cars, construct gazebos; certainly he can fix a silly little timer.
Well, I can’t seem to find Carter’s FPIES timer. I’ve looked everywhere! It’s not in his bed or mixed in with the toys. It’s not in the car or the diaper bag. Perhaps I accidently threw it out with the thousands of diapers and formula containers. Maybe it got mixed up in the bundles of vomit soaked clothes and blankets. I might have left it at the hospital or the doctor’s office. That’s only 9 different lost and found boxes I’ll need to check.
Still no luck. No timer.
Wait, did you hear that? A DING! I am sure I heard a ding! Maybe it was the timer! It must be buried here in the couch cushions or hidden behind the pots and pans in the cupboard! Finally our FPIES journey is over! The timer is going off!!
Oh, wait, it wasn’t the FPIES timer. It was only the microwave. Looks like my coffee’s ready. It’s not the end of FPIES, just the beginning of my caffeine fix.
So, if you want to know when Carter will outgrow his FPIES, I can honestly say I have no idea. But if you see a timer laying on the side of the road, could you stop and pick it up? It might just belong to Carter or Sam or Brendan or Kara or Ellie or Hayleigh or Maya or Bridget or Gracie or Olivia or Bronsen or all the other FPIES kids who’ve reached their second birthday and have yet to hear the DING.

Tuesday, July 12, 2011

Tummy

I was making dinner last night and the Caleb was sitting across from me at the island eating some carrots. Carter climbed up into the other stool and asked for a snack.  As he was munching on some sweet potato chips, Caleb asked me if Carter could have a carrot. I explained, once again, that carrots aren’t safe for his little brother. Carter turned to me and said, “No. Tummy.” I dropped my spoon. Carter has never said anything about foods not being safe for him, although I seem to be constantly telling him that foods aren’t safe.
I asked Carter if he could eat the food sitting on the counter. “No. Me. Tummy,” he said again and pointed his little finger at all the food I was using to make dinner.  It was a bittersweet moment for me. My eyes were filled with tears as I hugged my littlest man. He has finally made the connection that some foods aren’t good for him.  In a way, I felt relieved. He knew that this was unsafe food for him. We have worked for months to get him to understand that we were not withholding food to be mean, but rather to keep him safe. Even now, I get teary eyed. This was such a milestone moment for us and one more positive step to keep his tummy safe.

Monday, July 11, 2011

FPIES or 2??

FPIES or 2? This is our newest battle. New behaviors pop up and it has become so hard to tell whether they are developmentally appropriate or a sign that FPIES is at work. When do I worry and when do I let it go? When do I correct the behavior and when do I cuddle it? These are behaviors that are not normal for Carter. We saw a lot of these as a result of internal pain that he wasn’t able to express. Maybe now he’s just experimenting with self expression.
·         Screaming
·         Hitting
·         Randomly saying “Owwie”
·         Constantly saying “No”
·         Refusal to sleep
·         Laying on the floor curled up in a ball
·         Not wanting to eat
·         Wanting to have his blankie and bapee (pacifier) constantly
·         Being Argumentative
·         Needing my full attention
·         Violent and Random mood swings
These could all be the actions of a 2year old trying to figure out his world and find his place in it. They could also be signs that there is something happening internally. Am I setting up a future filled with up hill battles because I am not being firm enough or consistent enough? Perhaps. Should I know the difference between a 2 year old tantrum and cries of pain? Probably.  But my mommy instinct is tired and I can no longer view Carter’s world without my FPIES glasses on. It is a part of him and I cannot separate the two. He is growing in spite of FPIES.  He is happy despite his FPIES. It is always there, and maybe I should be strong enough to separate the two, but maybe it just isn’t worth it.
Everyday, Carter says a new word. Everyday he shows us something new about himself. He’s even showing interest in potty training and telling us when he needs a diaper change. He has come so far in the last month.  In spite. Despite. Because of.  With.  And that is what truly matters.

Cast is Gone!!!!

The cast is gone!! Carter went back to the doctor for a check up x-ray on his arm and a new cast, since he threw up all over the other one.  Well, after less than 3 weeks, the Doctor said Carter’s looked great and he didn’t need the cast anymore!! It was perfect timing because we were headed to the beach for 7 days and casts and sand don’t mix! Carter was so happy to have his arm back. It was no longer the boo boo arm!
We spent 7 wonderful days at the beach, enjoying the coastal air, Nana and Papa and all the family memories that we will cherish forever. Carter got to dig in the sand and jump in the waves. He became such a BOY over that week. He left as a toddler, maybe even a little on the baby side, and he came home a BOY. Independent, Stubborn, Determined. No longer content to watch life from the sidelines, he must be in the action.
And in case you were wondering, there is no fear of slides. That little man ran right over to the first slide he could find at the park all by himself. WHEEEEE!!!!

Thursday, July 7, 2011

FPIES and Good Morning America

FPIES awareness is happening, today!! A story just aired this morning on Good Morning America about another little boy, Landon, who also has FPIES. It is a great piece and it really shows the struggles that both the families and the child deal with everyday. I would like to extend a big thank you to Fallon and her family for pushing through and helping to show the rest of the world what goes on in our house everyday.

Carter was so excited while he watched. He sat on my lap and pointed to the screen saying "More baby like me". He was clapping when he saw the blueberries and strawberries. Please take 5 minutes and watch this video.

Parents Limit Child to Less Than 10 Foods Due to Rare Allergy Video - ABC News

Monday, June 27, 2011

We tried eggs one more time. The big boys were having eggs for breakfast and Carter was literally crying for eggs of his own. His rash had cleared up, so I went with it. I gave him one scrambled egg.  He munched it right up. Within an hour, he had a new area of fresh rash on his shoulder and a small rash around his face. That was our confirmation that eggs alone were not going to be a part of Carter’s diet.  But what about eggs cooked foods?
The next day I gave him a waffle. They were Carter safe waffles made with corn starch and eggs.  The small rash around his face turned into a larger welt and spread to his cheek. Eggs are, were officially a no go. The strangest part of all this involved his patch testing. In January of this year, Carter had patch testing done. One of the patches was eggs. I looked at his back on Friday while getting him changed and the area where the egg patch had been placed was raised and discolored.  It was a prefect little circle. The patch testing was done 7 months ago and yet his skin still reacted. This tells me that his body still has a lot more healing to do.
We took the whole family camping over the weekend and learned two very important things.
1)     Carter gets car sick. Vomit does not clean off of a cast. Pukie is Carter’s word for throwing up. Always pack extra clothes in case someone vomits twice in 10 minutes.
2)     Carter cannot cheat on his diet. No matter how much he begs, we cannot give in. He cried for watermelon. It is on his list of Maybe foods.  After 4 small pieces, we had reactive diapers for the next 2 days and disturbed sleep. Watermelon will now go on the Unsafe list.
Camping was a great adventure and we all had a great time! Every family outing is a learning experience and if we do it right, it is also a time to smile and watch our boys be boys.

Friday, June 17, 2011

Hello Rash. Bye Bye Eggs.

Eggs. Today is day seven of eggs. Well it should be day 7, but I had to pull them this morning. On the first day that Carter tried the eggs, he got a small red raised bumpy rash on the back of his neck. I thought for sure it was heat rash since he had just gotten the cast on 2 days earlier. Each day the rash got worse, until yesterday when it covered his neck up into his hair, down his back, across his neck and over his shoulders onto his chest. They were now starting to look like little pimples. I noticed several on his bottom as well. He also had a runny nose and loose, slightly acidic diapers. I was really hoping that it was just an adjustment to the cast and the pain that his body was experiencing from the break.  I was even hopeful that the rash was a simple heat rash or even a reaction to the cast material.
Sadly, it seems to be the worst of the possibilities, the one thing I wanted so much for him. The food I wanted him to pass so badly. These were the safe eggs. The ones with no soy, no grain, no contamination. I really thought the reactions we saw all those months ago were from the feed given to the chickens. It appears I was wrong. Which leads me to another question: Does that mean that the reaction he had to the chicken had nothing to do with the feed? Does this mean that he will never be able to eat meat? Does this mean that regardless of the source, all meat proteins will cause problems?

3 Doctors

We have had 3 doctors’ appointments this week, and all of them went well!! We had the speech evaluation and they also did a full evaluation to look for any developmental delay. He showed normal development in all areas expect his verbalization. In that area he is only 4 months behind, which is pretty good considering all he has been through. Even though he has a delay in speech, it is not enough to qualify for treatment. I am not worried about it though. He has made great strides in the last month and once he enters preschool in August, I am sure his language will blossom even more!
Carter also had his well baby visit yesterday and he’s growing well. His weight is still at the 24% at 26 pounds. His height has really taken off and he’s 35 inches which puts him in the 63%. His pediatrician was really happy with how far he has come. We did have a bit of a comical moment when the doctor tried to find FPIES in the computer system as a diagnosis choice, but it wasn’t there! Guess we are still too new!
We went to see the Orthopedic doctor today to get another X-ray of Carter’s arm. The bone looks great and is healing wonderfully! We will go back next week to get another x-ray to continue to monitor the process of his arm.
It is really nice to get positive feedback from all of these appointments. Carter has started to get used to maneuvering with his cast and has become pretty darn good at using his left hand! Only 5 more weeks!! And then its time to go swimming!!

Monday, June 13, 2011

Redefining Relax

Relax by definition means: Make or become less tense or anxious or Rest or engage in an enjoyable activity so as to become less tired or anxious (Dictionary.Com)
I have lost the ability to relax. It is not the everyday household chores. It is not the specialized cooking. It isn’t even the care required for 3 growing boys. I know that there will always be something to do. It is part of the package, but my mind cannot let the ever present fear of FPIES rest.
My two youngest were napping earlier and I was sitting at the computer trying to learn more about FPIES, trying to stay one step ahead. I don’t want to miss something important that could help Carter. I don’t want to take a misstep and set him back either.  There is always something I can learn from other moms, articles, research and Carter himself.  Looking back on Carter’s history, there were so many signs trying to point the way, signs that I missed. I don’t want to miss them again.
I am always waiting for the next wall, the next stumbling block, the next wave to hit. Carter just needs to catch a break. Unfortunately the break he caught was a broken arm. He has been struggling with his speech and the ability to communicate, and now this little independent boy is struggling to do things himself. He is now learning a new word, Help. Help to get on the couch. Help to eat his food. Help to drink his cup. Help to carry his toys. Help to get down from the chair. He has returned to screaming and hitting when he is upset or unable to verbalize his needs. We have a speech evaluation on Thursday and I hope that they are able to guide us and give Carter some relief.
Everyone has their limit, Carter included. I worry so much that Carter will finally encounter an obstacle he cannot overcome, the one that keeps the smile from returning to his sweet face.  I am hopeful that together Carter and I can learn to ride the next wave, and the next, and the next. And maybe it's time to redefine the meaning of the word Relax.

Carter is Two!


I just wanted to share Carter's 2nd Birthday Announcement. He has come so far and we are so proud and an d honored to watch our big boy grow. Thank you to all of you for journeying with us on this road of learning and healing. We couldn't do it without you!

Friday, June 10, 2011

Full Circle

June 14 of 2010 was my first post on the Baby Center FPIES board. I was reaching out to other moms who knew where we were and where we were headed. Carter had just reacted to rice milk. June 6, 2011. I gave Carter yogurt with Rice Starch in it.  We have come so far, and yet still have so much further to go.
FULL CIRCLE
Next weekend is Father’s Day weekend. It is also my Brother in Law’s birthday. Happy early Birthday J!! It is a time of fun and memory making. Or at least it should be. For me it marks our true FPIES anniversary. It was not Carter’s first FPIES reaction, that happened in May. But it was the moment when I realized that this was a force much bigger than I had anticipated. It was something I could not navigate on my own. It was the moment I realized that we were dealing with something much more involved than a severe case of Milk and Soy Protein Intolerance. This FPIES beast functioned like nothing I had ever imagined.
The Thursday before Father’s Day 2010, I gave Carter a cheese less quesadilla. There were refried black beans and tomato salsa. I checked the product labels carefully to make sure they were free of Milk, Soy and Rice. Carter gobbled them down.
Friday morning, June 18, 2010, he woke up in pain. His diaper was full and had leaked all over the bed and himself. He cried when I changed him. I cleaned him up, consoled him and tried to figure out the cause. Later that day, he had another blow out diaper.  It was full of mucous and burned his skin. After that diaper, I turned to the new found support of the other FPIES moms. Talking it over with someone who is now a great friend, J.M., I realized the connection. Soy is a legume. Black beans are a legume. It was the beans that were causing all the distress. After this realization, Carter had another blow out diaper. He sat in the bath tub screaming while I tried to clean off the pain I had inflicted. I called my husband in tears. I had done this to him. I fed him this horrible food. It was all I could think about. I held Carter and we cried together.
Eric came home from work as fast as he could. His Father’s Day was spent helping to care for a very sick little boy. It was not the last time I called Eric at work, in desperate need to hear a calm voice. It was not the last time that FPIES stole precious family moments.  It has been a year since FPIES became the 6th member of our family. It has taken me a year to come to terms with the fact that FPIES is not leaving. We have learned many of the rules, but we still make mistakes. We still lose sleep. We still shed tears.
We have also learned to savor those big smiles and bright eyes. We have learned to slow down and focus on making happy memories. We celebrate the little victories like Carter safe eggs from the local Farmer’s Market and we have found a strength we never knew was there. On our 1 year FPIES anniversary, I will not mourn was has been taken, but I WILL celebrate in ALL that we have been given.

3weeks, 3 breaks. An Update

A lot has happened in the last 3 weeks. I was just beginning to think that things had leveled out around here. I should know better. I start thinking like that and BAM! Life decides to shake things up a bit!
We finally got our long awaited results back from New Jersey. They showed some promise that his body is learning to develop mechanisms to fight FPIES, at least for Soy. It doesn’t mean that he won’t have a reaction to Soy and it doesn’t guarantee that he will outgrow it, but it does tell us that someday his severity may not be as bad.  It also showed that his reactions to Milk and Wheat were much worse that I realized. It has started a fire within me to eliminate Soy, Dairy and Gluten from our lives. It will not be an easy task, but our home needs to be a true Safe Haven for Carter.
We had an accidental run in with rice. I bought Carter some Coconut yogurt, a food that I knew to be safe. I made the mistake of not double checking the ingredient list. He ate half a cup for dinner. He had disturbed sleep that night and a nasty green acidic diaper full of undigested food. Yuck, I know. It shocked me back into the FPIES reality that I thought we had so far, gained some real control. I picked up the yogurt container and there on the ingredient list was Rice Starch. The last time we encountered rice was a year ago, by way of rice milk. It was a pretty obvious and quick fail and we haven’t touched rice since. I always wondered whether Rice was really a trigger food. We got our answer. Rice will go on the list of Untouchables. Just one more thing to avoid! So now we add Rice to the list of foods that need to find their way out of our home.
We also decided that it was time to try putting all three boys in the same room.  The big boys have shared a room for over 2 years and have been eagerly awaiting Carter to join in the nightly slumber party. We moved Carter’s crib into the Big Boy’s room a week ago.  It was a little rough in the beginning. Carter tried to get his brothers to play with him and it took over an hour and a half for him to finally give up. The nights started to get better and then . . .
Wednesday we took the boys to the park. Carter wanted to go down the BIG BIG slide.  He loves slides! He started out just fine, but then fear set in, he put his foot out to stop himself and it caused his body to jolt forward. He extended his arm to catch himself and I watched it buckle underneath him. When I picked him up, he was terrified. There was a bump on his head, but he looked alright otherwise. It was 2:30 and he hadn’t had a nap all day. We put him in the car and then put him down for a nap. He woke up at 4 and I knew something wasn’t right. He just stood there and cried. I immediately thought food and mentally ran through everything he’d eaten or been exposed to, with FPIES you always think food first.  He sat in my lap and cried. I couldn’t think of anything he had eaten that would cause such upset.  So we started a full body evaluation. Bending and pressing on all parts of his body to find the cause for the pain. I bent his right wrist forward and he screamed. I pressed against his arm which brought on more tears and screaming. His lack of verbalization makes isolating pain tricky. It was an emotional time for all of us, big boys included. We compared the right arm to the left and it was considerably swollen. 4 hours and an ER trip later; we had a splint and x-rays to confirm a broken arm. We had to wait until the next day, Thursday, to get a cast. They wanted to wait for the swelling to go down. A visit to the Orthopedic doctor brought a Camo cast past the elbow and an explanation that he had broken it in 3 places, both long bones in his right arm. We will now see them once a week for follow up x rays to check on the healing progress.
There has been a question of his bone density, but that will be brought up with the pediatrician next week. Carter also has a speech evaluation next week as well. And through it all, he has remained all smiles. He gets a little frustrated with the loss of independence, but we are all working to help him stay strong because it is his strength that strengthens us.

Monday, May 23, 2011

What was that?

Two days ago Carter said the sweetest thing, “T”. He finally verbalized a name for his oldest brother, Tyler. He has called Caleb, K K, for months. He has said both Mommy and Daddy, but when you pointed to Carter and said, “Who’s that?” he would always smile and then give someone else’s name, usually Daddy or Izzie, the cat. Surprisingly, it never hurt Tyler’s feelings. He never took it personally, just like he’s never taken any of the changes caused by Carter’s FPIES personally. But you should have seen Tyler’s face when he realized Carter was actually calling him by name. He had such a huge smile on his face! What a great present for Tyler.
Carter has an appointment for a speech evaluation on June 16. Although he vocalizes a lot and makes lots of noises, he has very few words that are understood by other people. I understand 90% of what he says, but then again I’m around him all day. Most of the words he says are really inflections sounds to represent words, but not the actual words themselves. This lack of verbal communication has led to Carter screaming and hitting in frustration when he can’t get me to understand what he is trying to say.
Tonight, as he was getting ready for bed, he told his daddy he loved him. It was an, “I love you” or even a “Love you”. It was just one long sound, “iieeoouuvvveeoouu”, but it was the closest Carter has ever come to saying those 3 words. They are words that can melt your heart, and tonight hearing him say them in his own way, followed by that bright sun-shiny smile, melted mine.
Carter, I love you too.

Sunday, May 22, 2011

Burns and Nightmares

It only took 3 doses of Augmentin before the trouble really started. It began with a scenario I hadn’t seen in months, Carter walking around with his hand grabbing at his bottom and saying “Owwwie”. I changed him and was met with acidic poop and a bright red bottom. There was a small, raised bump on his bottom as well. I coated him with Desitin and it only made him cringe. Little did I know at the time, but Desitin is not the best idea to help extreme cases of reactive diapers. 
Later that day, he pooped again, and started to cry. This time when I changed him, we both ended up in tears. He grabbed and clawed at my arms, screaming in pain as I wiped his little bottom clean. That “small, raised bump” had turned into a raw, oozing burn the size of a quarter. The rest of his bottom was covered in red bumps and was red and swollen. I coated the entire area in Aquaphor, my new best friend. He cried out and winced in pain when I picked him up and pressed against his diaper area. When we got downstairs, every step was followed by an ouchie kind of noise. He was walking with his legs spread wide apart.  And them he sat down to read a book. The shock surprised me almost as much as it did him. He couldn’t sit down!!
We’ve had some nasty diaper rashes in the past. We’ve had one’s that have bled and covered his diaper in blood, but they never caused him this much pain. I gave him so Tylenol and we settled him in a bath. It was like having a newborn again. He couldn’t sit, do we had to lay him down. And surprisingly enough, he didn’t fight it. He just laid there while we poured water on him to help sooth the pain. It was almost 2 hours before he could sit down again. We stopped the Augmentin and it still took over a week before the acidic diapers went away, before he stopped screaming at every diaper change. The oozing burn on his bottom has turned into a scar. That was 3 teaspoons of medicine over 3 days. That was all it took to wreck havoc on his system.
And if all that wasn’t enough, we’ve had to stop the Singulair because it DID give him nightmares. How can you tell if a one year old is having nightmares? Hour after hour of crying out in his sleep. Screams waking me up, causing me to fly out of bed. Picking him up and finding him inconsolable. He was not only having nightmares, he escalated to night terrors. We went through those with Tyler. It was a phase for him and I couldn’t help make it better.  I was not about to put Cater through that too. Especially not if I could stop it.
Our medicine choices are becoming more and more limited. They seem to be causing more harm than good. Where do we go from here?

Happy Birthday Carter!!

We just celebrated Carter’s 2nd birthday. He won’t actually be 2 until the 30th, so I plan to enjoy every last minute of having a one year old in our home.  Parties and outings have always been a strain on the family. It seems that no matter how well we watch him, Carter always manages to get something unsafe. We have taken him to parties and I’ve worn him in the carrier the entire time, and it still doesn’t help. We spend the nights after these events with a little boy who can’t sleep. Sometimes just disturbed sleep, sometimes it’s crying out in pain and sometimes its reactive diapers that last for days afterward. I have started to wonder if he has nightmares or anxiety from these experiences. How else do I explain him crying out in his sleep, screaming and clinging to me? It is always s the same and it has made leaving the house a stress for us all.
Yesterday was Carter’s day. All of the food was safe for him. We made a “No Outside Food or Drink” rule and put that in his party invitation. Carter had 2 hours where everything really was for him. We set all the food out on the tables, and as guests started to eat, Carter wanted to as well. He asked, “Eat?” and I got to say yes. His little face lit up and he looked at me with surprise. “Me?!?” he said. I told him he could take the food right off the table and he was so happy.  I never had to say “No”, or “That’s not safe” or “Not for you”.  And when someone spilled food, I didn’t need to rush to clean it up. When Carter picked up food off the floor, I didn’t have to worry about whether it was safe.
He even got to try Cotton Candy for the first time. We rented a cotton candy machine and, although he liked watching Daddy make it, he didn’t know what to do with the texture.  He managed to eat a couple bites though.
He had a cupcake with chocolate frosting! Thank you again Amanda for coming up with such a great recipe. The Quinoa Merry Muffins were a success! Daddy helped him figure out what frosting was and how to eat it. Chocolate was a new and slightly unsure flavor, but there were lots of "Mmm's".
It was a truly magical day. Our friends and family were so supportive and accommodating to make sure Carter was safe and had fun. It may have been a short 2 hours for everyone else, but it was so important for us. Carter was normal. He was just like everyone else.