Thursday, December 24, 2015

Snoke Family Update Christmas 2015

Heeeeeey everyone!  Merry Christmas!!

Thought I'd give you all a quick update on how we're doing in the Snoke household.

Dave is in the off-season for ultimate frisbee right now and I am LOVING having him at home more for the time being.  We haven't really accomplished anything super amazing with this extra time, but rather our life has just been a wee bit less stressful and we've been able to spend more time together tackling all the regular day-to-day things that life throws at us.  He's been getting out and running, riding his bike, or "exploring" outside with the boys as much as he can, and he's also helping me around the house and in the kitchen a ton which is a super duper blessing to my frequently overwhelmed self.  Work is going well for him.  He goes to work, does his thing, and comes home. I'm very grateful that he has a job that does not stress him out a ton and allows him the flexibility to leave early or go in late on occasion so he can attend to family matters or accompany changes in schedule due to my job.

Krew is now 5 1/2 and in transitional kindergarten (ie extended preschool, not actual kindergarten) and doing very well.  His teachers are focusing on helping him to overcome his perfectionist tendencies (hmmm no idea where he got those) and also manage his emotions in times of disappointment, embarrassment, or sadness.  He's still our sensitive, inquisitive, deep-thinking, emotional, introspective little boy. He's very into Legos, drawing, and other art crafts.  He's obsessed with Minecraft on the iPad and gets a 45-minute limit per day.  Otherwise we start seeing behavior issues due to too much screen time.  Through managing his 45 minutes using a timer, he's now learned how to add and subtract in 5s, 10s, and 15s and is impressive in how much math he can do in his head.  He's found that movies affect his emotions too much, so we don't watch a lot of those right now.  Also he played on a recreational soccer team for a couple months this fall and surprised us by actually participating (the previous season he sat on the sidelines pouting much of the time) and actually turned out to be a decent soccer player.  It was super exciting and we were so proud of him.

Greyden will be 3 1/2 at the end of January and is in the 3-year-old class at preschool.  He seems to really enjoy school.  He still doesn't really color, draw, or write much, and honestly we still can't even tell if he's left- or right-handed.  But he loves the social interaction and learning and singing with his class.  He is a spunky little boy.  He is either on or off, hot or cold.  Usually he's on.  He's typically smiling, talking loudly, attacking people with aggressive physical attention, and always moving. That child.  I tell him to stand by the cart in the grocery store and he can't help but wiggle in his place.  He's the kid disappearing down the next aisle, walking off with the wrong mom, climbing in the clothing racks, running in front of other people's carts.  All the while with a huge grin or look of excitement on his face.  Not because he's trying to disobey, but rather because he's spirited and curious and excited about life.  He's good for Krew.  It makes me smile inside (and sometimes on the outside) to see Krew joining in Greyden's "wild" behaviors while we're out in public, because I know Grey's bringing out a hidden side of Krew that we wouldn't see otherwise.  When I see Krew getting excited, running around playing make-believe in the grocery store, getting in other people's ways, I may feel slightly embarrassed and be apologetic, but really inside I'm so happy to see him being free-spirited and also playing well with his brother.  At the same time, Krew will watch over Greyden and tell him, "Greyden, you shouldn't do that.  That's not safe."  God gave them each other for a reason.

I'm sure everyone is wondering how Greyden's health is doing, and so I will provide a relatively brief update on that.  In his last endoscopy in October, Greyden's results showed that his upper esophagus was almost completely healed (with an eosinophil count of 2, down from >50 at his last endoscopy).  His lower esophagus was markedly healed, with a count of 36 eosinophils, down from >80 eosinophils at his last endoscopy.  We still have work to do on his lower esophagus, but the results were still wonderful and were what we had been praying for, and I cried many relieved, grateful mommy tears.  He wasn't all the way healed, but his health was moving in the right direction and we were finding our way.  The consensus from most of the doctors we talked to at that time seemed to be that no more additional food restrictions were needed (i.e. we likely caught all of his food triggers) but that his reflux needed to be resolved for the remaining esophageal damage.  It is hard for the doctors to know what to do with Greyden, and I completely understand this, because most if not all of their patients are on PPIs at this point in their healing journeys.  They have flat out told us this.  They all suggested PPIs to see if it heals the remaining damage.  We're not opposed to using PPIs if it's the only choice left, but we do want to see if we can heal his reflux issues through other means first.  So for right now we are taking him to an integrative doctor who is helping us to try to balance his immune system and heal his digestive system, which will hopefully resolve the reflux and stop any remaining EoE issues.  We are giving him many daily supplements to trigger his immune system to balance itself out and also to help his body heal.  Already we have seen huge improvements in his skin, which is encouraging.  His cradle cap that he'd had since he was a baby has suddenly all flaked off and is now gone.  Additionally, the keratosis pilaris that had been constantly getting worse on his arms and face is now reversing and is much milder than previously.  Even these small signs give me some hope.  Our current plan with the integrative doc will likely take another two or three months before we'll be ready to do another endoscopy and see if it's working.  In the meantime, he is on the same food restrictions as he's been for the last six months or so.  No gluten, diary, soy, rice, eggs, beef, chicken, pork, fish, shellfish, peanuts, tree nuts, green beans, bananas (and plantains by relation), cocoa, or yeast.  We pray that at his next endoscopy he'll be healed, and then we can start reintroducing some foods to his diet again.

As for an update on me, I'm staying busy being wife, mom, homemaker, and part-time worker.  My health goes up and down, but I'd like to say I'm having more and more good days and fewer and fewer bad days.  If I stay strict on my diet and my sleep and keep my stress level low, I do well.  But when any of those three areas falters, my body tends to crash. My job has gone in and out of spurts of being very stressful over the last 6-9 months, which at times led me to work up to 30 hours per week. I know that doesn't sound like much to all you full-time workers out there, but with my health issues and also keeping up with Greyden's needs, it's simply too much for me right now.  I'm grateful to say it now looks like those stressful times at work should be over for a long while and I'm back down to working 16-24 hours per week.  I'm still spending a tremendous number of hours in the kitchen trying to keep up with healing diets for both Greyden and me, but as a result I'm also starting to feel like I really know what I'm doing in the kitchen and it's exciting to be able to say I think I'm a fairly decent cook.  Except for cooking fish and hamburgers.  I always overcook fish and hamburgers. (Sorry, Dave.) I also do volunteer work for church and participate in Bible studies. It's a busy life.  And I miss things like blogging, photography, and playing piano, which are still passions of mine that I never seem to have time for anymore.  I'm hoping that I can eventually learn to manage all my responsibilities better so I can get back to some of those things that bring me extra joy.  But honestly, my life is already pretty joyous as it is. :)

Alright I think that's a good update on us all.  We wish you all a very Merry Christmas and encourage you to remember the reason for the season in the midst of everything.  If it weren't for Jesus and God's grace, we wouldn't be where we are today as a family, nor would we have the hope that we do for the future.  We look forward to 2016 and pray it's a wonderful year for you all, too. :)

God bless,
Kara (& the rest of The Snokes)

Monday, October 5, 2015

The Teal Pumpkin Project and Reflections on a Year Ago

The kids have been begging to put up decorations and pumpkins are popping up everywhere. The air is getting cool, leaves are starting to turn.  Halloween is quickly approaching.  And my anxieties are increasing.

This week marks the one-year anniversary of one of the hardest weeks of my life.  A year ago this week, we took our son Greyden to numerous specialists to try to find out the cause of his intense and scary vomiting episodes.  As part of the diagnosis processes and because the specialists couldn't explain the mystery of his vomiting, we were told we had to schedule an upper GI x-ray and abdominal ultrasound to rule out internal abnormalities.  The doctor who requested the x-ray and ultrasound kindly avoided the word tumor, but he didn't have to say it.  I knew it was a concern, even if unlikely. (And my suspicions about it being a concern were later confirmed when I read through his paperwork from the visit.)

What followed was one of the most intensely emotional weeks of my life.  Living day to day not knowing if there was something terribly wrong with our child, and knowing there could be, was hard beyond description.  I had some desperate chats with God that week.  I cried a ton.  I had a constant knot in my stomach and I barely ate. Everything else in life faded into the background as I focused on appreciating the smiles on my kids' faces and hugging them often, especially Greyden, as I couldn't help but fear the extreme situation in which we could lose him if something really was wrong inside his little body.  For the first time, the reality of how quickly one of my children could be taken from me was incredibly tangible. And amazingly, during this time, I somehow came to grips with this reality. Through my constant reflections and turning to God, I reached a point where I knew He was in control, and I knew He could take my child from me, and I knew that if that happened, He would carry me through it and I would somehow survive.  Not without intense pain and suffering, but I knew that there was more to reality what I could see right in front of me, and that God loved me and would somehow guide me through the darkness.  It was an amazing place to be in my relationship with Him, however intense and hard it was.

For those of you who don't know the whole story, the x-ray and ultrasound turned out fine.  The only thing the doctors found was some reflux.  Everything else internally appeared just as it should be.  I praised God, oh, how I thanked Him.  There was no tumor or devastating abnormality; we weren't dealing with anything life-threatening.  Let me tell you, when you have fears that something life-taking could be wrong with your child, and then you find out it's not the case, all other bad news seems somewhat pale in comparison.  So as we moved forward and continued to face health struggles with Greyden - a surgery, an endoscopy, diagnosis of an eosinophilic disorder, then extreme diet changes and food allergies, more bad endoscopies, and a return of his intense vomiting episodes...none of it seemed nearly as bad anymore. Because our little boy was in our arms and was smiling and loving on us and we were loving on him and that's what mattered.

Ironically, as I reflect on this week a year ago, we are preparing for yet another endoscopy for Greyden this Wednesday.  We will be finding out if our most recent diet changes have removed enough food allergens from his diet for his esophagus to heal.  My stomach again is twisting into knots, and I'm finding myself emotional and weepy.  Every endoscopy thus far - this is our fourth in a year - has resulted in bad news and difficult life changes.  I have a small glimmer of hope somewhere inside that maybe it will be our turn for good news, but I don't count on it.  I pray to God, I ask him to heal our little boy, but I know that God isn't a genie in a bottle and that what He allows to happen in this world isn't always what I would want to happen. Oh, if I've learned one thing over the last year, it's been that. That His ways are not my ways, but He is still God and He still loves me and I am to still love Him back despite it all.

So all of this finally leads me to why I originally sat down to write this blog post (and clearly I got very sidetracked - sorry!): with Halloween approaching, I'm having concerns about Greyden and trick-or-treating.  There are so few candies he can eat, and honestly I'm nervous about him even reaching into the bags of candy at all because of the allergens that will get onto his hands. It's been such a long road with him, and we believe we've seen him react to even small amounts of cross-contact with his allergen foods.  Halloween trick-or-treating is a very nerve-racking scenario for a parent of a child with food allergies or similar issues.

The Teal Pumpkin Project is a campaign led by Food Allergy Research and Education (FARE) to raise awareness of all the children struggling with food allergies, like Greyden, who may not be able to participate in Halloween trick-or-treating as freely as other kids.  By placing a teal pumpkin on your porch, you are telling others that your house is a safe place for kids with food allergies and that you are providing non-food items for kids who cannot have candy.  You should provide the non-food items in a bowl separate from the food items, ideally, if you decide to do both.  I think this is SO awesome, as the teal pumpkin houses may be the only ones where Greyden can chose a treat and actually keep it for himself.  You can read all about the Teal Pumpkin Project here:

It's crazy to me to think about a year ago.  I'm sure there were teal pumpkins, but I took no notice.  It didn't matter to us yet. I didn't realize how many people are struggling and suffering with food allergies, and I had no idea how we ourselves would end up falling into it all face-first.  It's been an eye-opening year and I'm thankful for my new awareness.

So this year we will be placing a teal pumpkin on our porch.  We will have non-food treats and also some allergen-free candies (smarties and ring pops) for the kids.  Dave and I decided to only offer candies that are safe for Greyden and most kids with food allergies, just out of respect for him and them.  It's our way of trying to make life a little more "normal" and fun for our little boy.  These days, with the way everything revolves around food, very little seems "normal" for Greyden, and I'm sure it's the same way for other kids with food allergies.  If we can give them a little piece of normal in the midst of their constant worries at Halloween, then by all means let's do it.

If you'd like to participate in the Teal Pumpkin Project, you can pledge to participate at the link below:

Also, if you'd like a list of ideas of non-food items that you can provide for trick-or-treaters, here is a list from the Teal Pumpkin Project website:

  • Glow sticks, bracelets, or necklaces
  • Pencils, pens, crayons or markers
  • Bubbles
  • Halloween erasers or pencil toppers
  • Mini Slinkies
  • Whistles, kazoos, or noisemakers
  • Bouncy balls
  • Finger puppets or novelty toys
  • Coins
  • Spider rings
  • Vampire fangs
  • Mini notepads
  • Playing cards
  • Bookmarks
  • Stickers
  • Stencils
Thanks so much friends, for reading through this and for stepping into our shoes and our little boy's shoes for a moment.  Even if you don't do a teal pumpkin this year, I still just appreciate you considering and listening to our story.  The more people who know and are aware, the better.

Also, if you could send up a prayer for our little guy this Wednesday as he undergoes his fourth endosocopy, it would mean a lot to us.

Thanks friends. :)

Sunday, August 30, 2015

Recipe: Breakfast Sausage Patties {DHwRF, AIP}

I've found that in the mornings, it's really important to have some breakfast items that are quick grab-n-go. One healthy way I've managed to do this is by making a big batch of breakfast sausage patties on the weekends. I then keep the patties in a container in the fridge, and every morning I grab a couple, heat them in the microwave, then eat them in the car on my way to work. I also give each of our kids one of these each morning as part of their breakfast so that I know they're starting their days with some healthy protein.

The recipe I use is a personal modification of several recipes I've seen online or in cookbooks. It is AIP-compliant and also has a DHwRF-compliant option. Here it is below if you'd like to try it. :)

Breakfast Sausage Patties {DHwRF, AIP}

  • 2 lbs ground meat (I use turkey, you could also use pork)
  • 2 tsp salt (or more to taste, I like mine a little saltier)
  • 3 tsp dried rosemary
  • 2 tsp dried thyme
  • 1 tsp dried sage
  • optional: maple syrup (leave out for DHwRF) or dried fruit (I always add some maple syrup now as I love the sweetness it adds)
  1. Combine all ingredients together in a bowl.
  2. Mix together well with hands until all ingredients are evenly dispersed.
  3. Cover and let sit in refrigerator for at least 15 minutes, up to overnight, to let flavors set.
  4. Preheat oven to 475 degrees.
  5. Cover baking sheet with parchment paper.
  6. Make patties out of meat mixture and set on parchment paper. If meat sticks to hands, rinse hands in water and the water will help prevent stickiness.
  7. Bake patties in oven for 10 minutes. Flip, then bake for another 10 minutes. Then set broiler on high for 2-3 minutes to brown tops.
  8. When fully cooked, remove from oven, let cool, then place in glass container in refrigerator. If you don't think you'll eat them all within a week, store some of them in the freezer.
You could also try adding other veggies or flavors, such as some onion or some spinach. Spinach is the next thing I want to try to sneak some extra nutrients into my kids. ;)


Friday, August 14, 2015

Cyclic Vomiting? FPIES? Whatever it is, we don't like it.

I’ve briefly mentioned in past posts that our son Greyden has severe vomiting episodes with no known cause. These are sad, stressful, and sometimes scary times for us as parents. We feel hopeless as we watch our little boy struggle through extreme pain and nausea, inconsolable and white as a sheet. As quickly as the episodes begin, they end, and suddenly Grey is back to normal, happy, energetic, and hungry. It’s all so crazy and bizarre.

Greyden experienced his fifth documented episode this past Tuesday. Every time we have another episode, I find myself on a frantic hunt for answers for the next many days. I scour the internet and forums, try to talk to anyone I can who I think might have some small bit of advise on how to protect our son. I just want to help my little boy, to stop these horrible episodes. The pediatric GI says Greyden has cyclic vomiting syndrome, which is a disease that is not clearly understood, but it's believed that basically the brain misfires and sends your digestive tract into a seizure or migraine of sorts. Our allergist has concerns that it may be an FPIES reaction, which is a severe reaction to ingested food proteins. The naturopath leans more toward a food reaction, also. After doing my own reading and research, I lean more toward it being cyclic vomiting syndrome. Clearly, there's no straight answer.

The episode this past Tuesday morning started like every other episode Greyden has had.  They're incredibly predictable.  I had checked on him in his room as I'd headed downstairs in the early morning, and saw him curled up in a ball on his bed. Maybe that should have been my first sign, since he typically lays spread out while he's sleeping.  Shortly after, around 7 am, I heard his distressed wails at the top of the stairs.  “Mommy it hurts!! It hurts!!” I ran upstairs to find him holding his abdomen, crying.  I scooped him into my arms, ran into the bathroom, and flipped on the light to check his lips. Sure enough, they were losing their color. That is always our sign; his lips turn white. I took Greyden quickly into our bedroom where Dave was still sleeping, and tried to wake him as gently as possible, saying, “Dave, I think he’s having another episode.” Dave immediately climbed out of bed and we started our regimen.

We gathered a bucket and towels, went downstairs, and I held Greyden and tried to comfort him. We got him a cup of water, which he always requests. He was completely washed out at this point and kept moving in my arms, unable to get comfortable, whimpering and putting his hand over his abdomen and crying, “It hurts!!” After a short while, the pain seemed to get worse, and Greyden pointed to his stomach and said, “I can’t move!” Dave took him and held him at that point, and then suddenly Greyden started shaking. I’d never seen him do this before, and panic rushed through me. Dave and I quickly discussed if we might need to take him for medical help, and so I ran upstairs to put on enough clothes to head out the door. As I went past the playroom, I quickly glanced at Krew, who was happily playing with his Legos on the floor and was completely unaware of anything happening. I wondered if I should get him dressed or call someone quickly to come stay with him. I did neither. I ran back downstairs, where Greyden was still having shaking episodes. Then, praise the Lord, the shaking stopped. Greyden’s body relaxed, and I watched as his eyes rolled a bit and his eyelids closed. I’d seen this before with past episodes and knew that he was ok. He often did this. I watched his chest against Dave’s to make sure it was moving, watched the rhythm of his breath. I never know if he’s truly sleeping during these moments or if the pain is so severe that he is basically passing out.

Dave took Greyden out on the back porch and sat with him, I assume both for the fresh air and to prepare for the vomit we knew was likely coming. As we sat outside, I took this video for documentation (don’t worry, there's no vomit).

As you can see, all the blood had drained from his body. He was white as a ghost, but had a summer tan so instead he just looked orange all over. You can’t tell where his lips meet his face because it’s all the same color.

We sat outside for quite a while, just waiting. When we felt fairly certain that the worst was over and we weren’t going to need medical help, I quickly got Krew dressed and took him to our sitter’s house, where they were already expecting him for the day, although not for another hour and a half. I couldn’t help but start crying as I explained to Eileen why Krew was there earlier than normal, and why Greyden wasn’t with him. Fortunately, Eileen knows this scenario well by now too, and gave me a big hug and didn’t ask many questions.

When I got back home, Greyden was still lethargic and washed out, but had not yet vomited. He was asking for water, as he always does during his episodes. The water usually causes him to vomit, but it actually seems better that way because for a short while after vomiting he seems to be in less distress. So we gave him all the water he wanted. Sure enough, within 15 or 20 minutes he had his first major vomit. It was almost all water, as we expected. We wiped him and everything else in his proximity down with towels and changed him into clean underwear, then we covered the couch in towels and laid him down with a sippy cup of water and the iPad. A little bit of color had come back to his face and he was able to talk to us a little. He drank water and quietly watched the iPad when he was able to find a comfortable position. Twenty minutes later, all his color washed away again and he began requesting that we would hold him. We knew another round of vomiting was coming. Before long, there it was. This time we managed to get some of it into the bucket.

During one of his calm times, when the pain subsided enough for him to rest by himself.

We followed this pattern until 10am.  Intense pain and nausea, vomit, a little respite with some color returning to his face, water, pain and nausea comes back, he turns white, he vomits again.  With past episodes, the cycle has lasted until 11am or noon. This time, although it seemed to start out more severe than normal, it ended more quickly than we expected.  At 10 am he vomited one last time, and afterward requested some juice and apples. When he starts asking for non-water beverages and food, we always know that his episode is passing. His color continued to come back at this point, and before long he fell asleep sitting up on the couch, wrapped in a towel. He’d only had one sip of his juice and hadn’t touched his apples, but I felt confident that the episode was over. Dave felt confident about it too and decided to shower and head into the office for work.

(Yes, there's a mattress in our living room. The boys use it as a trampoline.)

I worked from the kitchen table until Greyden awoke an hour and a half later. As I expected, he acted as if nothing had ever been wrong. He bounced up from the couch, full of energy and color. He started chatting my ear off, requested food, and begged for me to let him help make his plate. Our little boy was back. I fed him, dressed him, and took him to the sitter’s for the rest of the day. She reported later that he was perfectly normal and energetic the whole afternoon.

Helping me with the mail right after he woke up.

Cutest weirdest face I've ever seen him make. Also right after waking up.

I share this story for several reasons. First, there’s always the chance that someone out there will read this and be able to offer us some bit of advice. We are searching for answers and so desperately want to know how to help and protect our little boy. Whether it's cyclic vomiting syndrome or FPIES, both of them have triggers.  If we could figure out these triggers, maybe we could avoid some of these episodes.  Second, it is good for my own documentation. The more details we can remember for solving this mystery, the better. Third, I think our family and friends want to understand what we mean when we say, “Greyden is having a vomiting episode.” They want to know how to support us and pray for us. And we cherish all support and prayers. This disease or food reaction or whatever it is is downright horrible. And it breaks my heart to know that there are kids out there who go through this far more often than Greyden. He only has episodes every two to six months. Other kids or adults with cylic vomiting or FPIES have them every month or every week. They can last for entire 24 hours periods or longer, and sometimes the kids or adults can end up in the hospital from complications.  It can be devastating.

For now, our little boy is through his latest episode and is back to his happy, bouncy self.  In a week or so, the intensity of this past Tuesday will fade from my thoughts, and for a while I'll rarely think about his episodes.  I usually forget to even wonder when the next one will occur.  But, as is always the case, the next one will inevitably come.  And then we'll just start all over.  But with every episode he has, we are able to collect a little more information, a few more clues.  So maybe, hopefully, eventually we'll figure this thing out.

Same kid, same day, just hours apart.

Monday, August 10, 2015

Roy Boy Turns Three!

To my dear Greyden Roy Boy,

You are now three year old, as of July 28th. For some reason, having you turn three didn’t hit me as hard as some of the other birthdays you boys have had. I’m not quite sure why. Maybe because our lives are so busy, maybe because the baby things have been disappearing from our house one by one for a while anyway. Maybe because you talk so much, so you seem older than you are. And talk you do, child. Nonstop.

You really are such a sweet, fun boy. Your mood is typically either complacent or happy. Oh, you get in your toddler funks and throw some fits, but even compared to what we went through with Krew, your tantrums have been easy to deal with. In general you have a very happy-go-lucky disposition. You don’t get sad or angry very often, unless your daddy or I tell you to give us some space (see paragraph below).

The hardest thing with you right now is how demanding and clingy you are when we’re at home. You want 100% of someone’s attention 24/7. If Daddy’s home, you choose him, and when he’s not home, you choose me. And then you follow us around, all around the house, never getting further than four feet from us, talking to us and asking us questions and requesting us to help you with this and help you with that. In your mind, we should not be permitted to do anything by ourselves, especially without consulting with you first. When Daddy is gone, you literally follow me into the bathroom and play right next to the shower while I’m showering, narrating what you’re doing and expecting responses from me the whole time. You stand by while I use the toilet, while I do my makeup, while I get dressed. While I do laundry. While I cook. While I clean. While I load the car. Wherever I go, there you are. And you talk the whole time, requesting things from me. The. Whole. Time. “Mommy what are you doing. Mommy why are you doing that. Mommy when are you going to get me food. Mommy I’m hungry. Mommy I want you to play this with me. When you’re done getting ready you will play with me? Ok. [One second pause.] Are you done now? Oh, no, ok. [One more second pause.] How about now? [Two second pause.] Now??? Why are you doing that, I thought you were going to play with me now. Mommy I’m hungry. Hey Mommy watch this. Mommy I’m hungry. Mommy can I put your makeup on? Mommy are we going somewhere? Mommy what’s this? Mommy…” And if I ask you to go play by yourself so I can be alone for a while, the whole world literally collapses. You lose your mind, sob and wail hysterically. You start making up excuses for why you absolutely must be around me and will tell me “Something hurts somewhere!!” It’s honestly very overwhelming and I’m not sure what to do with it. The other day I made you stay outside my room for 30 minutes while I got ready and you sobbed literally the entire time. I finally came out and knelt down at your level after 30 minutes and between sobs you asked me, “Can. I. Come. In. With. You. Now?” It broke my heart. I’m not sure what’s causing it or how to react to it. Hopefully this too shall pass.

What would be great is if you played with Krewson more, but unfortunately you’re not quite at the maturity level where he wants to play with you all the time. Sometimes you guys will join in together, making forts or running around or throwing things or wrestling, but more often than not he still prefers to play by himself, typically building things with Legos which isn’t something you can really join in on. You would love to play with him 24/7, but you’ve seemed to resign yourself to accepting whatever scraps he’ll throw you, which makes me sad at times. I do see you playing together more and more though, slowly but surely, so I still have hope that one day you’ll be good friends and play together a lot. We just haven’t hit that point yet.

In general, you are loud, hyper, a wee bit crazy at times, and “all boy.” You love cars, trucks, transformers, anything that shoots anything, wrestling, throwing things, hitting, running, and arranging fights between “good guys” and “bad guys” with your cars. More than once, to my embarrassment, you’ve gone up to an unsuspecting child and hauled off and slapped him as a friendly way of inviting him to play. So we’ve explained to you (several times) that it’s not ok to hit people until you ask them first, and even if they want to play that way, we still don’t hit hard.

Nine times out of ten, when there is bickering between you and Krew, it’s because you are picking on him. You have a defiant, ornery streak in you, but you do it in a cutesy deceptively sweet way that probably lets you get away with more than you should. We’ve had to work on your talking back also, as you love to tell us when you disagree with us and question the rules we give you.

At the same time, you sure do love people. You love hugs and being held, which is surprising given that when you were really young you didn’t want to cuddle at all. You will give cuddles at any time now and prefer to always be close to someone, both physically and relationally, with constant interaction.

In terms of “school stuff,” you picked up on your letters and numbers very early, many months ago now, even though neither your daddy nor I really taught them to you. I think you know pretty much the whole alphabet and can also count to a little above 20 (although you frequently get mixed up in the teens). In two weeks you’ll be starting up preschool again, which will be three mornings a week. I’m hoping you’re a little less reluctant to walk into the room and separate from me this year, but we’ll see. I’m not feeling too optimistic with how clingy you’ve been at home lately.

Your favorite sports team right now is no doubt the Raleigh Flyers, which is the professional ultimate frisbee team that your daddy is playing for. You request to wear your Raleigh Flyers shirt daily, and you love talking about Raleigh Flyers at any time of day. You will randomly and frequently bust out chanting a Raleigh Flyers cheer which cracks everyone up. I love your enthusiasm for your Daddy’s team and I know it warms his heart.

Speaking of those Raleigh Flyers chants, you have an incredibly loud and clear voice that rings through the air and has been known to trigger head pains in me and your daddy when we’re having headachey days. However, I think this could be an awesome thing, because you also love to sing and started being able to sing on tune and hit notes several months ago. So if it turns out you can carry a tune as you grow older, you’ll also have the vocal chords for it. You do have an opera-singing uncle so there’s definitely potential in your genetics. ;)

In terms of growth, you are currently about 37.5 inches tall and around 33 lbs. You're wearing mostly 2T clothes still, because boys' clothes run baggy, and in general your daddy and I prefer less baggy clothing on you boys. You feet are around size 7, and you are now POTTY TRAINED praise the Lord so you don't wear diapers anymore. :) Your eyes are a medium/light brown and your hair fluctuates between light brown in the winter and dark blonde in the summer. (So right now it's dark blonde.)

Your winter look (left) and summer look (right).

And of course, I have to mention something about your diet, although I want to keep it short and sweet. I don’t ever want you to feel like your health issues and diet restrictions define who you are, because they don’t. They are something you are going through, but they are not you. Nonetheless, I have to say that buddy, you absolutely rock with your diet. You are learning what you can and cannot eat, and when you know you can't eat something you absolutely don't eat it. When you see something in front of you that you’re not sure of, you ask if you’re allowed to eat it. You rarely, if ever, complain when someone eats something you can’t have in front of you. You just go with the flow and follow the rules. I’ve never seen you try to sneak anything or taste anything you’re not sure of. This is such a relief to me as your momma...I don’t feel as concerned about you possibly eating something you shouldn’t, and I also don’t feel as sad for you because you really don’t seem sad. I thank God so much for this blessing in the midst of all our health and diet struggles with you. It helps make my heart lighter.

Alright G-Roy, I think that’s all for now. Your Daddy and I love you so much and feel so blessed and privileged to have you as our little boy.

Lots of love,

Sunday, July 12, 2015

Update on Greyden and Me

So, ahem, sorry about the hiatus.  I had some crazy work deadlines that pushed me to working almost full time, and then we've been traveling a ton over the last month.  And have I mentioned that we have insane diet restrictions that require me to spend an inordinate number of hours in the kitchen? Or that I have a husband, two young kids, two dogs, and normal life stuff to keep up with? Or that my husband plays ultimate frisbee for two separate teams and is gone at practices and traveling a lot? (And the kids and I try to go to the games as often as we can.)  Life swept me away and I sort of almost forgot I had a blog.  Once in a while I'd see my signature in my emails with my blog link, and I'd be like Oh yeah, I have a blog!!  I should write a post!!  And then the next thing would happen and thoughts of my blog would flitter and float away.  I think life is slowing down a bit now, so I hope to get back to my blog ASAP, but nevertheless I wanted to drop in quick and update you all on our health statuses.

For Greyden, the last time I gave an update, we had found that his eosinophil levels in his esophagus had almost doubled and we weren't sure what we would do next.  Since then, we met with his allergist and dietitian and also took him to see a naturopath and had some food sensitivity tests performed. There were some conflicts in opinions on how we should proceed (which we expected), but after getting results and talking with everyone, we've landed on an agreed diet for Greyden. We've now additionally removed pork, fish, rice, cocoa, bananas, and yeast (which includes vinegar). Because he's so limited in the proteins he's allowed to eat, we supplement his protein intake using elemental formula, which we mix into his coconut milk, applesauce, pasta sauce, etc.  We aim for him to get between 13 and 16 grams of protein per day minimum and I try to monitor the amount he ingests as much as I can.  We're also trying to limit sunflower seeds and celery, as he showed low reactions to those in the sensitivity tests as well, although those are not a definite exclusion from his diet.

I've begun to try to help him heal from the inside out as much as possible.  I'm trying to keep his carb and sugar intake low in case he has any type of gut dysbiosis, which could lead to leaky gut and food sensitivities and would be exacerbated by high carb and sugar intake.  I'm trying to get as many nutritious foods into him as possible so his body has the nutrition it needs to heal, and I'm especially focusing on broadening his vegetable intake.  Per the naturopath's suggestion, he's taking several supplements to help his esophagus heal and to resolve any gut issues, including a strong probiotic, l-glutamine, quercitin, unda, and aloe vera juice.  Basically, all day every day I'm focused on getting as much nutrition and as little "bad" stuff into his body as possible to give him the greatest chance for beating this disease.

The PPIs were a point of contention in the midst of this, as they always are.  The allergist and dietitian think he needs to be on them, the naturopath is pretty strongly against using them right now (she understands they are sometimes needed, but wants to try other approaches first), and Dave and I are torn in the middle. After some discussion, everyone agreed that it would be acceptable to wait and see the results of his next scope prior to putting him on them.  His next scope is scheduled for September 9th.  So now we wait and see.

As for me, I was floating along well on my DHwRF diet, but as soon as my vegetable and carb intake started to increase, my GI symptoms got pretty bad.  I know, from past experience and my previous diagnosis with SIBO in January, that this means my SIBO has likely returned (which happens in close to 50% of cases).  I also know that I'm not going to heal from my autoimmune issues and get healthy until my body gets the nutrients it needs from my foods, and my body isn't going to get the nutrients it needs from my foods until I can actually eat them and absorb the nutrients, and I'm not going to be able to absorb the nutrients until I heal my gut and stop the SIBO from eating the nutrients before I get them.  Which left me at: must kill the SIBO.

So I did a lot of reading and research over the last couple of weeks and figured out an herbal antimicrobial plan for myself.  I started it on Sunday.  Based on the die-off reaction I had (I had a horrible autoimmune flare and felt like death for several days) and the fact that my bloating and gas pain are already reducing, I think it's working.  If it works, I'll share it here on my blog.  If it doesn't work, I will probably end up back at the GI doctor for some more antibiotics.  I'm not going to be able to progress with the DHwRF diet reintroductions until the SIBO is gone, because I basically get sick from almost everything I eat when my SIBO is bad.  In fact, I had started reacting even to some of my DHwRF safe foods, such as zucchini and ground beef.  It was crazy.  So I'm pausing from reintroductions with my DHwRF diet until the SIBO is gone, and then I'll be back to it. Hopefully it will just be a month or so. 

Alright, I think that's all the updates for now.  I'm about to head out of town (traveling yet again), so gotta keep this as short as possible.  I'll be back soon. :)

Sunday, June 14, 2015

12 Weeks In - DHwRF

Yesterday was 12 weeks into my elimination diet!

I haven't done any update posts for the last three weeks, because life's been a bit busy.  I've been working more than twice as much as normal (almost full time) and we traveled one weekend and had friends in town another weekend. Keeping up with all that plus my diet and my son's diet and the normal-life stuff left me with about, oh, zero minutes for writing a blog post.

So, I'm finally sitting down on a Sunday morning before church to record an update.

The last three weeks actually haven't provided a whole lot to report.  First, I waited until the end of Week 10 before I felt like my bout with headaches was completely resolved.  Week 11, I either got a stomach bug or food poisoning or had a violent reaction to some cardboard-esque grean beans from Trader Joe's. Whatever it was, I was bed-ridden and throwing up and had diarrhea and almost passed out at one point.  No one else in the family ever got sick, thank goodness.  Then, a couple days after I was healed from that episode, at the beginning of Week 12, I got glutened.  It was totally my fault; I allowed friends to bring bread and cereal into the house and wasn't careful enough with instructing them to wash hands, clean the table, put dishes directly into the dishwasher, use a separate dish cloth, etc.  I know I'm an insanely sensitive celiac, and yet sometimes I just get lazy and I guess I want to feel like a normal person for a little while.  And then I always pay for it.  I end up with abdominal pains, bloating, and brain fog that comes and goes for days.  It's a week later now, and I'm still having daily issues.  It's so frustrating.

I did have a couple reintroductions.  First, I reintroduced potatoes, which went fine, hurray!!  I expected they would, as they reintroduced fine the last time I did the elimination diet.  Since potatoes are a nightshade along with tomatoes, I'm really hopeful that I'll be able reintroduce tomatoes next without any issues.  Fingers crossed.  I miss my tomatoes.  However, before reintroducing them, I need to get rid of my headaches.  Which leads to my next reintroduction...

After my headaches went away the end of Week 10, I tried reintroducing milk again.  I was fine with one serving, but more than one serving in a week resulted in another headache.  But here's the catch: I was consuming this milk through raspberry Starbucks lattes. (Yes, slap me on the hand, that's one of my few indulgences in life and I want to know if I'm able to have it.  I am able to differentiate celiac symptoms from other symptoms, and I do not get glutened from these lattes, so I want to know if they're safe otherwise digestively and for autoimmune issues so I can have a treat and a way to socialize.)  I assumed that the headaches from the lattes were a result of the milk, but then yesterday I had a raspberry latte with coconut milk, and this morning I woke up with a returned headache.  So now I'm wondering if it's actually the raspberry flavoring causing the issues, not the milk.  It seemed so unlikely to me that the flavoring would cause the autoimmune reactions, but now I really don't know.  I think I'm going to have to wait for this headache to go away and then try plain lattes with milk and no flavoring.  This is what I get for reintroducing several things at once instead of going step by step.  I should have done plain lattes first, and then added the flavoring.

Alright that's it for now.  I gotta get to church. :)

If you'd like to catch up on my past weeks, you can find them all below.

Digestive Health with REAL Food - Take 2
One Week In - DHwRF Update
Two Weeks In - DHwRF
Three Weeks In - DHwRF
Four Weeks In - DHwRF
Five Weeks In - DHwRF
Six Weeks In - DHwRF
Seven Weeks In - DHwRF
Nine Weeks In - DHwRF

Saturday, May 23, 2015

Nine Weeks In - DHwRF

Today marks the end of Week 9 on my elimination diet!

I didn't do an update post for Week 8, so I will cover both weeks in this post.

Week 8 I reintroduced milk.  I felt fine the first couple of days, but by the third day or so I could tell that I was feeling more fatigued and tired, and I also got a heavy feeling in the front of my head. Almost like a headache, but not quite.  Kind of like when I take Benedryl, but without the loopiness. I didn't seem to have any brain fog with it.  It was rather weird, unlike any symptoms I'd ever experienced before.

I assumed the head weirdness was from the milk, but then I stopped the milk and my head progressed to get worse into Week 9.  Simultaneously, my eyes had a reaction to something - I believe my mascara - and became inflamed, painful, and itchy.  It hurt to have my eyes open or to try to focus on anything, and as a result my head got worse and worse.  At one point I experienced the closet thing I've had to a migraine.  My head hurt so bad.  I could barely function, all I wanted to do was climb under the covers in a dark room and lay in quiet. That was on Tuesday.  From Wednesday on, the severity of the headache lessened and would even leave for short bits.  Several days later now, it's still hurting off and on but for the most part isn't affecting my daily life anymore.

And so now I don't know if it was a milk reaction or something completely separate.  I may have to do another milk trial and see what happens.  If my head starts hurting I'll know to quit immediately before I end up with another rough week like this one.  And if milk did cause all the head problems I experienced, then yikes. That would just be crazy.

Digestively, I've been pretty normal the last couple of weeks.  As usual, only bloating when I eat too much fruit.  Darn that fruit.  I reintroduced broccoli a couple days ago.  The first day, when I just ate maybe 3/4 a cup, I felt fine and didn't notice anything afterward.  This was very exciting, because last time I did an elimination diet, the broccoli reintroduction resulted in a lot of abdominal pain.  The next day I ate quite a bit more broccoli to see what would happen.  I didn't feel anything that day, but when I woke up the next morning I had some discomfort and gas pains.  So it seems that broccoli is ok in a single serving but I shouldn't eat more than that in a day.  

I also had a small bit of Coffeemate hazelnut creamer in coffee a couple times over these past two weeks.  (Yes, processed galore, I'm fully aware, but it was just a small amount and sometimes a girl needs a break.)  I was pleasantly surprised to find that although it still tasted good, it didn't seem near as delicious as it used to.  And in fact, in most cases, I found that I now actually prefer the taste of black coffee rather than the coffee with the creamer.  This makes me really happy - so much better for me!  I used to be so addicted to the creamer.

So to sum up the foods I'm eating now, here they are below (reintroduced ones in bold):

uncured bacon, ideally sugar-free
uncured lunchmeats, salami, and pepperoni (stopped eating salami and pepperoni due to nightshades in seasonings)

green beans
broccoli sprouts (no longer eating)
lemon juice, fresh
lime juice, fresh

coconut oil
MCT oil
olive oil
garlic-infused olive oil
Himalayan pink sea salt


kombucha (both store-bought and homemade)
unsweetened hot tea
La Croix (occasionally)

gelatin (Great Lakes grass-fed)
Monuka honey (not DHwRF-approved, but included to help fight possible h. pylori infection)

If you'd like to catch up on my past weeks, you can find them all below.

Digestive Health with REAL Food - Take 2
One Week In - DHwRF Update
Two Weeks In - DHwRF
Three Weeks In - DHwRF
Four Weeks In - DHwRF
Five Weeks In - DHwRF
Six Weeks In - DHwRF
Seven Weeks In - DHwRF

Wednesday, May 20, 2015

National Eosinophil Awareness Week: Greyden's Story

It was early morning, and we were headed to the hospital for the fifth time in the last seven months. Our sweet Greyden, just 2 ½ years old, asked where we were going, and we gingerly told him that we were going to see the doctor. He absorbed our answer for a short bit, and then, in his precious, innocent voice he asked, “Is the doctor going to fix me?”

I felt a bit of my heart break.

It’s been a long seven months in our house, ever since we discovered that our youngest son, Greyden, has various health issues with no clear cut answers. It’s been a trying time, full of life changes, confusion, anxieties, intense self-education (I now read PubMed in my spare time), monetary struggles, and learning to lean into our Lord and our support system of friends and family.

I now know, through various support groups online and through connecting with others, that there are many, many other families going through these same struggles with their own children. My heart hurts for all of us.

This week is Eosinophil Awareness Week. It seemed like the perfect time to join in spreading awareness and share our own personal story with Greyden.

Greyden has been diagnosed with esophageal eosinophils (ee-sof-uh-jee-uhl ee-uh-sin-uh-fils), meaning that his esophagus (the long tube that carries food from the mouth to the stomach) is inflamed and has many eosinophils in its tissues. The current estimated prevalence of this disorder is around 1 in 2000.

Eosinophils are white blood cells that are typically associated with allergies and are a normal part of certain body tissues. They are harmless and often helpful when they’re in places they’re supposed to be, and they’re generally bad when they’re in places where they’re not supposed to be. The esophagus, unfortunately, is not a place where they’re supposed to be.

In an overly basic nutshell, eosinophils are responsible for moving toward areas of the body where allergens (airborne or food-related) are sensed, and then once there they release toxins to fight the allergens. However, sometimes eosinophils show up where they shouldn’t be or show up in above-normal amounts, and in this case they can result in inflammation and damage to body tissue. This is what is happening in Greyden’s esophagus. The eosinophils are damaging his esophagus and causing it to become inflamed. An eosinophilic disorder of this type is not exclusive to the esophagus, and can actually also happen in the stomach, intestines, or any other body organ. The esophagus, however, seems to be the most common place for it to occur.

Common symptoms of esophageal eosinophilia in children are:

  • chest pain or heartburn
  • abdominal pain
  • poor appetite or refusal to eat
  • poor weight gain
  • failure to thrive
  • trouble sleeping
  • difficulty swallowing (dysphagia)
  • pain or discomfort while swallowing
  • food getting stuck in esophagus (food impaction, usually requires emergency surgery)
  • nausea
  • vomiting

Interestingly enough, Greyden does not show any of the typical outward symptoms of esophageal eosinophilia. He does not complain about pain or discomfort, he does not avoid foods, he does not vomit after eating, he is not suffering from failure to thrive or malnutrition. On the outside he appears to be your typical, healthy 2-year-old. He does have seemingly random vomiting episodes, which are actually what led us to discover that he had eosinophilic problems in the first place. However, most if not all of the doctors we’ve seen have believed his vomiting episodes to be a separate disorder, either cyclic vomiting syndrome or FPIES (which is a whole other blog post). Other symptoms he’s had, which may or may not have been related to the eosinophilic disorder, were unexplained chronic diarrhea and minor feeding issues, where he’d chew his food for up to 15 minutes and be unable to swallow it. Throughout the past several months, both of these issues have resolved.

In most cases, it appears that esophageal eosinophils appear as a delayed response to food allergens entering the body. However, prior to identifying an individual’s food allergens (if they are ever identified at all), there is a standard method of diagnosis that occurs in any patient with esophageal eosinophils:

Step 1: If there is the possibility that the eosinophils are caused by reflux (often referred to as GERD), then the patient is put on a trial of proton pump inhibitor (PPI) medications, which are basically drugs that shut down the stomach’s acid production and hence should eliminate reflux. Typically, patients with eosinophils due to reflux are those where the number of eosinophils counted per biopsy (biopsy of the esophagus collected during endoscopy) are below 15 and only occur in the lower esophagus. Since Greyden had eosinophils all the way up to the top of his esophagus, his eosinophil counts were 35 in the lower esophagus and 25 in the upper esophagus, and the eosinophils were not following the typical pattern seen with reflux, his GI doctor did not think this was the case for him.

Step 2: It has been discovered that there is a subset of patients with esophageal eosinophils, not apparently caused by reflux, who still respond to the PPIs. Research is still being done into understanding this disorder, but for some reason, the PPIs shut down the eosinophilic response and the patients heal. Therefore, the standard method of diagnosis requires that all patients with esophageal eosinophils go through a trial period of PPIs to see if they respond.  If they do, the continuing treatment for these patients, then, is to remain on PPIs long-term. These patients are diagnosed as having PPI-responsive esophageal eosinophilia, or PPI-REE.

Step 3: If a patient does not respond to the PPIs, then the patient is diagnosed with eosinophilic esophagitis, or EoE (sometimes seen as EE). The only current treatment for EoE is an elimination diet to find the food allergens and/or use of steroids.

So where does Greyden stand on this crazy diagnostic ladder?

That’s where things get tricky.

See, let’s back up for a minute, and discuss me. If you know me personally or have been around this blog recently, you know I have a slew of health issues, and most of them are autoimmune issues that stem back to food or digestive issues. Due to all the self-education I’ve been doing for myself, I know that there can be negative effects from long-term PPI use due to the resulting lack of acid in the stomach. This made me incredibly wary about putting my 2-year-old on PPIs. When I heard that we were expected to put him on a high-dose of PPIs (Step 2 above), I couldn’t help but feel the hairs bristle on my neck. Honestly, justified or not, it made me freak out inside. Panic. The effects of digestive issues were so raw and upfront in my own life, I couldn’t handle the thought of predisposing my child to them through medications. If medications were the only option, then yes, I would have used them. But I knew that eosinophils in the esophagus are often believed to be triggered by food allergies, and so I knew there was more than one path to try to heal him. And so I wanted to skip the PPIs and try the elimination diet (typically saved for Step 3) first.

Fortunately, my wonderful husband understood my concerns and fears and was willing to agree to my plan.  It was a rather complicated process with some purposeful and accidental decisions, but we skipped the PPI trial and went straight to diet changes. But this, unfortunately, means that Greyden does not currently have a clear diagnosis. We don’t know whether he has PPI-REE or EoE. I’ve been willing to accept this unclear diagnosis as long as we were allowed to try to heal him through diet prior to using medications. I’m not completely against medications, but I want them to be the last resort, not the first.

So rather than following the typical plan for eosinophilic esophageal disorders, we’ve followed the below path:

Step 1: Endoscopy #1: Find out Greyden has eosinophils in his esophagus. Lower count was 35, upper count was 25.

Step 2: Try an elimination diet recommended by our GI doctor: removal of gluten, soy, dairy, eggs, and beef. Eat this way for 2-3 months. Note that his vomiting episodes (supposedly unrelated to eosinophils) have seemed to stop, suggesting a possible issue with one of the foods that has been removed.

Step 3: Endoscopy #2. Discover that Greyden still has eosinophils in his esophagus. Lower count was 50, upper count was 20.

Step 4: Do some research, and decide to take Greyden to allergist who specializes in working with eosinophilic gastrointestinal disorders, nearly three hours away, to have allergy testing performed. Through skin patch testing, discover that Greyden has delayed allergic reactions to wheat, soy, milk, beef, chicken, almonds, peanuts, and green beans. Remove all additional foods from his diet, so he’s now avoiding gluten, soy, dairy, eggs, beef, chicken, peanuts, tree nuts, and green beans. Eat this way for 2-3 months. Experience one vomiting episode in the middle of this time period, which unfortunately means the cause for vomiting has not been completely resolved. After the vomiting, he sometimes begins saying during or after eating that he needs his bucket to throw up (but never actually does). On a positive note, however, his chronic diarrhea has stopped and he has normal stools for the first time in his life. His incessantly runny nose has stopped running. Also, he no longer chews foods for long periods or refuses to swallow them. We all feel hopeful.

Daddy found a recipe for plantain pizza crust that Grey could actually eat.

Step 5: Endoscopy #3, which was last week. Discover that Greyden’s number of eosinophils in his esophagus have nearly doubled. Lower count was >50 and upper count was >80. Cry and seclude self from the world for a couple days to adjust to news as a concerned mother. Pull self together, start reaching out to others again, talk to some doctors, and write this blog post. We’re taking him to see his allergist and dietitian this Friday, during which we’ll discuss potential paths moving forward. We’re also looking into finding an integrative pediatrician to take him to, who can help us navigate the world of diet versus medicine in dealing with this chronic health condition.

At this point, my concerns about the state of Greyden’s esophagus are now outweighing my concerns about PPI use, so I expect that we will probably be putting him on PPIs within the next week or so. The official decision will be made after we talk to a few more medical professionals, but we need to stop the current trajectory and get his little body to start healing. Whether or not PPIs will help with his healing, however, is completely up in the air; it is estimated that only around 30% of patients with esophageal eosinophils respond to PPIs.

And if the PPIs don’t work, which is apparently around 70% likely, where does that leave us?

In a mess, it seems. We don’t know.

At minimum, I believe we will have to remove more foods from his diet. He may need to take steroids to calm his inflammation. There is the possibility that he will end up on elemental formula, meaning he will have to drink all of his food in a special formula and will not be able to eat any solid foods. As difficult as this diet sounds, over 95% of patients heal when they follow this regimen. Then, one by one, they proceed to add foods back into their diet and see which ones they react to. It’s a long, tedious process, but sometimes it’s the only option.

Fortunately, he still shows few if any outward symptoms of his eosinophilic disorder, which I don’t understand. It seems that he should be in pain or discomfort. During his second endoscopy, his poor little esophagus was so swollen that the GI doctor could barely get the scope down his throat. But when we ask him if anything hurts, he always replies with a “no.” This is complete blessing at this point, and I am so grateful for it. We don’t have to deal with a child in daily pain and distress, as I know so many parents do. However, this symptomless freedom won’t last forever. His GI doctor said that if we don’t get the disorder under control soon, he is going to start hurting, and he assumes it will happen within the next six months to a year. This puts pressure on us to figure out a remedy soon.

An additional concern is the number of times we are putting our child under anesthesia. Each time we try a new diet or treatment with him, we have to put him under anesthesia and perform an endoscopy to check his esophagus and assess his progress. He has been put under four times in the last seven months, one of which was deeper anesthesia during which he had to be intubated because it was for surgery. (Yet another separate health issue, fortunately now resolved.) I have honestly not read the research about the implications of multiple episodes of anesthesia for young children, because at this point we don’t have a choice. I am aware that there are implications, but I don’t want to know about them right now. I’ve decided that the knowledge is not worth the anxiety it will cause. We are trying to spread out his endoscopies as much as we can, but at the same time we need to get him healed and assess his progress. Unfortunately, many times we’re being forced to choose between the lesser of two evils.

Oh, and if you haven’t noticed, I’ve mentioned a lot of doctors, specialists, hospital visits, and specialized diets in this post. If you see the dollar signs racking up, you are correct. This disorder is anything but cheap. Balancing expensive diets and medical bills has become one of our new fortes.

So that’s where we are for now. In summary:
  • His eosinophilic disorder continues to worsen at an unfortunately fast rate.
  • He interestingly enough still shows few, if any, symptoms of his eosinophilic disorder. He used to chew foods indefinitely and refuse to swallow, but this is no longer occurring. He occasionally tells us that he needs to throw up in the middle of or immediately after eating, but he never actually does.
  • He tested as having positive delayed allergic reactions to many foods, the worst of which were wheat, milk, and beef. Even though removal of all positive foods did not heal his esophagus, removal of them did lessen his number of vomiting episodes, allowed him to have normal stools for the first time in his life, and stopped his runny nose. What do we do with this knowledge moving forward? What do we do with his diet?
  • We will likely now need to try using PPIs to see if he responds to them in an attempt to find anything to stop the current trajectory.
  • Unsure if we will be doing further food eliminations. If his disorder is very possibly a reaction to food allergens, do we want to continue to pursue what those allergens might be?
If you know anyone around you with eosinophilic disorders or with family members who have an eosinophilic disorder, give them a hug this week. Especially those who are experiencing a lot of pain or other symptoms, or who are on huge food restrictions. I can’t attest to the pain that I know many people experience with this disorder, but I can speak to the difficulty of completely changing your child’s diet. And I’ve also completely changed my own diet for health issues, so I know what it’s like to go through personally as well. It’s hard. I have to send food with Greyden everywhere. At birthday parties, he has to watch the other kids eat cupcakes while he eats something I’ve brought for him. He can’t partake in pizza parties or have macaroni and cheese for a quick lunch. The foods he can eat are only available at various stores scattered throughout the area, so I oftentimes have to drive to four different stores to collect everything for him, and then the food is incredibly expensive. I have to cook all the time. We can never eat out, or at least we haven’t been brave enough to so far. If I forget to send a snack to school or church, that means he doesn’t get to eat and has to watch all the other kids munch down on food while he just drinks water. Halloween and Easter are not the fun candy free-for-alls that most kids experience. We have to constantly watch him, make sure he doesn’t touch allergenic foods, make sure other kids don’t reach into his safe food using contaminated hands. We have to instruct his teachers and caregivers on how to work with him, and tell them to wash all the kids’ hands if they do a craft using Cheerios or Fruit Loops, and to watch Greyden like a hawk to make sure nothing enters his mouth. He can’t play with play dough because it has wheat in it, and we have to check his body care products to make sure they don’t contain allergens that could end up in his mouth. Every time I drop him off with anyone besides me or Dave, I feel a bit of angst inside, wondering if the temporary caretaker will remember all the ins and outs of protecting him, because I know it’s a long, difficult list of dos and don’ts.

I actually created a printout to give to caregivers or people who want to serve Greyden food. Here it is below, in case you’d ever like to babysit. ;)

Greyden’s Foods
** Please read all labels for any items that come in a bag, box, or can (including canned veggies, lunchmeats, and even bagged frozen fruits and veggies).  You’d be surprised what they sneak into seemingly basic foods.  We have been instructed by the dietician to treat all of his “no” foods as if they were so dangerous that they would send him into anaphylactic shock. **
OK to eat
NOT OK to eat
  • turkey (turkey breast, turkey bacon, lunchmeat, ground turkey, turkey pepperoni, etc.)
  • pork (ham, bacon, ground pork, pork pepperoni, etc.)
  • fish
  • all fruits
  • potatoes
  • rice
  • quinoa
  • rice noodles
  • corn noodles
  • oats that are labeled gluten-free
  • seeds (sunflower, hemp, chia, flaxseed, etc.)
  • sunbutter (sunflower seed butter)
  • corn
  • popcorn
  • coconut
  • coconut oil
  • olive oil
  • “butter” spread that is free of dairy, soy, and all other items listed in the list to the right
  • Daiya “cheese” (dairy-free cheese replacement)
  • salt, pepper, spices, herbs
  • chicken
  • beef
  • venison
  • green beans
  • gluten (wheat, barley, malt, rye)
  • oats that are not labeled gluten free
  • soy (including edamame)
  • eggs
  • dairy (milk, cheese, yogurt, sour cream, butter, cream cheese, etc.)
  • peanuts
  • tree nuts (almonds, cashews, walnuts, etc.)
  • any item which has an ingredient list that includes any of the above
  • any item which has an ingredient list that has an allergy warning or says “may contain:...” for any of the above
  • any item which has an ingredient list that says underneath it, “Produced in a facility that also processes…” any of the above items

Yes, its complicated. It’s confusing. But ya know what, we’re doing it. And even if it hasn’t healed his esophagus so far, it’s fixed other health issues for him, and that brings me at least a small bit of satisfaction and hope as his mother. I’ll be curious to see what his allergist and dietitian say on Friday regarding how to move forward with his diet...nothing seems simple anymore.

I hope this blog post helps clear up some confusion that I know friends and family have over Greyden’s disorder. I also help that I’ve helped raise some awareness to the effects that eosinophilic disorders can have on people’s lives. There are many children and adults affected by these disorders, and they all have their own difficulties and struggles, whether they be similar to or very different from Greyden's.

We're going to get through this I know, but we still love and appreciate all support and prayers from friends and family.  Thank you to all of you. :)

God bless.