LIVING

With EoE, Allergies, Asthma and a G-Tube

Va·ca·tion

The Oxford Dictionary defines vacation as:
NOUN

  1. An extended period of recreation, especially one spent away from home or in traveling.

I define a vacation as a time to escape the reality of our daily life. The allergic reactions, sickness, doctor appointments, limbs sliding out of place, strange rashes, making 50 meals a day and school.
A girl can dream right?
As the week grew closer for spring break I was getting super excited. I envisioned myself of the beach, the kids playing and everything else magically disappearing.
What actually happened…
We’re going to start 5 days before. I began packing. I had a free weekend day with no baseball and the house was clean. So I was going to tackle the long list of what needed to go. Nathan and my mom both laughed at me when I said I was going to get it knocked out. My response “Hey, you never know what my week is going to bring”. The first half of the week went surprisingly smooth with only one doctor appointment.
Thursday morning I woke up feeling dizzy. I got up and got the 3 big kids out the door to school. As I got their lunches and feeding tube bags ready I stumbled sideways a few times. It was really strange. I had a lot to do that day, our flight was at 5pm. I would need to pick the kids up around 1:30 to get to the airport an hour and a half away.

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I decided I needed to lay back down a while and see if this dizziness went away. I set my alarm for an hour and went back to sleep. When I got back up the dizziness hadn’t gone away. I tried to start packing some last minute things but I just couldn’t shake it. The room was spinning. Then I started feeling nauseous. I laid down on the couch and the room spun around me. What in the heck was going on? So I called the nurse. Explained I had no time for this and asked how to make it stop. She had me take my blood pressure, which was high, and advised me to go to the ER. I called Nathan home from work and by 11 I was in. After running an EKG, checking blood work and checked my blood pressure lying, sitting and standing nothing came up. The doctor came in and did some neurological tests. Fine. She began asking me about my ears. I told her I have been having ringing in my ear for a year. Ding ding ding, I have vertigo. She gave me some printed out exercises along with some Meclizine and Zofran then sent me on my way by noon. Fastest ER visit ever, they were awesome. Still dizzy and unable to drive Nathan had to take us to the airport. I managed to finish packing and we made it right on time. Good thing I started packing early.
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Once we got to the airport I let the kids pick out candy and a drink because WE WERE ON VACATION!!!!! About 10 minutes before we got the on the plane Layton started coughing, and coughing and coughing and coughing. What the heck? We got on the plane, I quickly wiped everyone’s seat down as the other passengers enjoyed watching my circus get situated, and Layton was still coughing. At this point

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she was constantly coughing. As I’m still trying to figure out what needed to stay in our seats and what needed to go overhead I just automatically grabbed an inhaler and had her take a couple puffs. I will admit, it was not her inhaler because she doesn’t have asthma. I knew though something was definitely wrong and we were getting ready to go on a 3 hour flight. As I got our things into place and buckled myself in I realized she was still coughing, the inhaler did nothing. The door was starting to close so I quickly TOLD the flight attendant I had to get some Benadryl out of the overhead compartment. I gave Layton a hefty dose and with in 10 minutes she was fine. This only leaves me to believe Layton is allergic to starburst. This was not a good start to our vacation.
Upon arrival of my parents place, in the dark, Charlie found a baby lobster in the first 5 minutes on the “quick look at the beach”. I love him.

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The next day we did our typical morning walk on the beach. Followed by lunch then swimming. That evening we went to dinner. Charlie ordered the alligator nuggets and fries. Gage was able to eat the bread on the table and got some butter noodles. The head chef told me they had disposable aluminum pans and they were able to broil Tinleigh some Mahi-Mahi. Layton had fries I think. About 15 minutes after sitting down and getting our drinks Tinleigh says to me, my throat is tight and it’s hard to breath. I took a deep breath, looked around the table gathered my thoughts along with the emergency bag and we headed outside for fresh air. Her airborne allergies followed us to vacation. Apparently they didn’t get the memo. Luckily the place we were at had vibrant Adirondack chairs all over out front for people to hang out in while waiting on a table. We were about to make this our seats for the duration of dinner. I gave Tinleigh her inhaler and mom brought our meals out. Once Tinleigh felt better I let her take a nibble of her Mahi. Unfortunately, it made her throat itchy. As we waited for the others to finish Charlie popped out to show me he had lost a tooth while eating his alligator. Did you know the vacation tooth fairy brings $5? I took my dinner home in a box, the whole situation made me lose my appetite.

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That night while sleeping Layton woke up itching like crazy. To the point I had to get up and give her Benadryl. The next morning she had a rash/ hives down her arms, on her face and all over her torso. What the heck? Sunburn? The pool water? Suntan lotion?

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Her face and arms were bright red. Was it sun poisoning? We went to the store and bought her a long sleeve suit and hat. We got to do the pirate ship that day and we kept her in the shade as much as we could. The itchiness persisted through the next day. So we kept her out of the sun altogether. Still not 100% what was going on. I thought she was starting to clear up at one point. It all came back again though all over her body and nothing made sense as to what it could be. I kept her on bendryl and slathered her in aquaphor along with hydrocortisone. At this point I contacted our allergist to get her in the loop on what was going on. Once we were home I made an appointment with our pediatrician. For the rash and her blockage in her belly he had felt the week before at her 4 yr appointment. That’s when it hit me. Could it be the miralax I had started a day or two before we left for vacation? At the pediatrician’s office we did an x-ray of her abdomen, which when the doctor touched she screamed in pain. Sure enough the x-ray showed impaction in her whole colon. So now she’s doing a clean out, yet still on miralax and still itchy. So I’m officially ruling out allergic to the sun, suntan lotion and pool water. We head to the allergist office tomorrow morning.

Also, while on vacation Tinleigh became extremely stuffy which I thought was her allergies kicking in. She’s been on allergy medicine for a few months now so that seemed strange. Turns out she actually caught a cold. Her asthma kicked in but we got it under control only needing one nebulizer treatment.

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Then there was the day Charlie, who never complains, comes to me and says his chest hurt. I asked if he hit it while swimming, could have been from using his boogie board in the ocean. He told me no, it was more inside. So I gave him a nebulizer treatment and that fixed it! There was no coughing or wheezing, just pain. Strange.

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Gage was the lucky one on this trip. The only thing that happened to him physically was a tumble with a wave on his boogie board. Mentally going to dinner twice was a bit hard. I made that up with some Hershey kisses. The second time we went to dinner we went to a place that we could stay outside so Tinleigh would be safe. Unfortunately, they didn’t have anything but salad for Gage to eat.

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Though I felt like I will never escape seeing my kids go through life with health issues we had a wonderful time. As Tinleigh said before we left, “The beach is a wonderful place to go. All the fresh air helps me breath better.” I think all the fun we had together, despite our few rough patches, the beach did help us all breath a little easier.

One of the biggest highlights for Gage and Tinleigh was being able to get something from the ice cream truck that came everyday.

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We also had a blast on the pirate ship. No food involved and the kids got to squirt all the adults with squirt guns.
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They learned the basics of shuffle board
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We even had a few serious rounds of Florida-opoly
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We swam and played together
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We all just breathed a little easier.

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And the only thing I forgot to throw in the suitcase in my dizzy state was Tinleigh’s underwear.

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March 25, 2018 Posted by | Charlie's allergies, daily life, Gage's allergies, LIVING, Tinleigh's allergies | , , , , , , , , , | Leave a comment

March

It’s March already! How is that even possible? The days have been flying by. We don’t seem to make it through a week with out seeing a doctor of some sort.

charlie.jpgCharlie just finished up his last week of physical therapy for his shoulders. The physical therapist that examined him has connective tissue disorder. She knew exactly what I was talking about when I brought up Ehlors Danlos. She did some flexibility measures on him and said no doubt he has some form of it. The biggest red flag being his shoulders sliding out of place. So now we’re armed with home exercises to continue to strengthen his shoulders up. He’s heading into baseball season now and we hope they stay in place for the whole season. I imagine we’ll be back to the PT department in the future as his hips are just starting to slide out as well.

gage.jpgGage gave us a nice scare a few weeks ago. He came to me and told me his shoulder blade hurt. He was throwing a ball around and I told him I doubt it hurts very much. I felt and poked around a bit to see if there were any bruises. Then I felt a very hard, nonmoving, lump right on his shoulder blade. So off to the doctor we went the next day. The doctor told me there is a definite bump there but he wasn’t too concerned. He said it’s where the muscle and tendon attach to the bone. Because of his rate of growth the bone is over compensating and forming this lump. We are keeping an eye on it and checking it every couple of weeks to watch for growth. We’ll go back to the doctor if we see rapid growth or for a 6 month check up on it, which ever comes first. On a good note he’s gained the 6lbs back he lost! We were having some struggles with hooking up to his feeding tube, he only wanted to eat food. I think letting him see that he wasn’t getting the right nutrition and weight loss helped him to be able to understand just how important that feeding tube is. Also this month Gage’s archery team made it to state finals. Lucky me, I was nominated to be the parent who got to ride along on the 4 hour bus ride. Lucky Gage, he got to ride the bus with his friends and stay safe! Up next, baseball season.

tinleigh.jpgMiss Tinleigh is loving school more that a kid should. Which is a good thing. She’s definitely thriving there. We had her long vision therapy appointment for evaluation on how much and what they will do to help strengthen her eyes and keep them from turning outward. When I had her at her 6 yr old check up the nurse and I both noticed her good eye was turning out as well. She is officially diagnosed with intermittent exotropia and oculomotor dysfunction. Tinleigh is having a rough time with all the colds and viruses right now. I expected her to have a rough year with all the new germs since she’s never been around a lot of other people. She also seems to be having more and more incidents in the evening when we cook dinner. I’ve watched her react to beef, pork and chicken now. Cooked dairy is still very bad for her as well. She now tells us her throat is tight and she becomes more and more stuffy along with coughing and watery eyes. I had started her allergy meds and qvar inhaler a month ago in hopes of building up her system so we could try getting her into the school lunch room towards the end of the school year. That way she may not have to sit in the nurses office during lunch while she’s in the 1st grade. If dinner time at home is going badly I worry so will school lunch. Her ankles have started giving her troubles again just as softball season starts. Time to get back into some at home physical therapy!

layton.jpgLayton is 4! I hate how fast the time is flying by. We had her 6 month check up for her toe walking and orthodics. Though she is staying flat about 80% of the time when she’s barefoot, we now have to work on her ankels. They’re not as strong as they should be because the muscle that runs down the front of the lower leg isn’t strong because of the toe walking. So now her ankles turn inward. We’re awaiting orthodics to call for something new for her. Layton has also been telling me daily she feels like she’s going to puke or she feels like she has guacamole in her throat. This began back in November and is slowly been getting worse. She has eczema down her torso, around her elbows and upper thighs. She’s also been having some bowel issues. We’re trying to clear that out and hoping that’s the cause of nauseousness. Her little cousin Ellie with EoE also has these issues.

Just to touch on Nathan a bit, he’s been in the emergency room. The doctor has discovered he has diverticulitis with a possible addition of Crohn’s disease / IBS. As we learn more about that and how to adjust his already limited diet I fear he faces a feeding tube down the road as well. We pray for now though we can get things under control. He has had 2 bouts of diverticulitis in 1 month already so we need to get things figured out quickly.

On a good note we got the kids into Cincinnati Childrens eosinophilic esophagitis clinic in Ohio. We head there the end of April. The bad thing is they only take 2 new patients a week so that means two trips. After that they will see them all at once if needed. We’re very excited. It’s four days of appointments. First day is scope day. Second day is bone density scan, which they’ve never had, along with behavior medicine. Third day is a tour of their research lab and we meet with the allergist. I’m really hoping to get some better answers for Tinleigh from the allergist while were there. I’ve requested someone that specializes in mast cell and asked for a certain test to be ran on her. They will also be evaluated for connective tissue disorder. The last day we meet back with the GI doctor, find out the results of the scopes and get a game plan together. We may also meet with nutrition.  

Why are we going to Cincinnati? We live in between Denver and Cinci where the top researchers are located. Having family in Ohio that can help us out when we travel just made more sense. Cincinnati does have access to trial drugs which we may be interested in trying down the road. We also want to help with their research in what ever way we can to hurry up and cure all kids with eosinophilic diseases.

The most exciting part about us going to Cincinnati is the phone call I received from Wings of Hope telling me that they would help fly us to and from Ohio for our doctor appointments. Wings of Hope is an aviation nonprofit organization which helps communities worldwide become more self-sufficient through improved health, education, economic opportunity, and food security. It was founded in 1962 in St. Louis, Missouri, and currently conducts operations in 11 countries, including the United States. The organization was nominated for the Nobel Peace Prize in 2011 and 2012, holds a 4-Star rating on Charity Navigator and is a GuideStar Gold Participant. In 2015, 92.3% of the organization’s budget was spent on its program services. We are so beyond lucky that they can help us with our travels. If not then we’re looking at a 10 hour drive one way, plus stops.  Things are definitely falling into place as we make the change to new GI doctors. I am still sort of shocked that Wings of Hope will be able help us with our travels.

March 20, 2018 Posted by | Charlie's allergies, Gage's allergies, Layton's food exploration, LIVING, Tinleigh's allergies | , , , , , , , , , , , | Leave a comment

How CURED helped me

As you know I spoke at the CURED 2017 conference last week. It opened my eyes. I knew that we were in our own little bubble world of EoE at my house. What I didn’t realize is that I also had a wall up around that bubble.

I was aware of what I thought CURED did. Attending this conference really brought me back to reality and showed me CURED is so much more.

CURED brought together professionals from all over the globe.

20171025_212054.jpgDo you even realize how amazing that is? Because of CURED doctors from all over the world are able to gather to share and learn about eosinophilic diseases. They are gaining knowledge and that means they are coming closer to a cure.

On Thursday I listened to many doctors and researchers discus different aspects of eosinophilic diseases. What really stuck out to me was hearing others in the profession stand to ask questions when the speaker was done. It made me realize that not everything is known. Doctors are still learning. They were there hoping to hear answers just as I was.

Friday was the same. What really brought me back to reality was hearing just how rare my kids still are. We are under 5% with how extreme their diets are and even a smaller percentage being that we have so many with EoE in our family. It opened my eyes, reminded me that I need to be fighting more for them.

I never realized the amount of research that goes into finding a cure. Do you know? It’s not just about finding a pill. They have to look at environmental factors. Is something triggering the disease to flare? How about genetics? My family has 5 people with EoE, other families have 1. They look at what the cells are doing and why they’re doing it. How food allergies play a roll, including environmental. I could go on and on. All of these different doctors are digging in at every aspect. It’s much, much more than just finding a pill.

Speakers at the conference.

Photo credit :Ting Wen

I left that conference feeling amazing. Just knowing all that is going on to help my kids eat one day. This group of people is really trying. I know this because they came to CURED to share and learn more. The amount of compassion they showed me after I gave my speech really reinforced that. They don’t really know what goes on at home, and I really pray that after hearing my speech it will push them to work harder.

Monday after the conference we visited our GI for an in office check up. I had a lot of questions to ask. Questions I wouldn’t have had if I hadn’t been to the conference. What I realized was that a lot of the information I had gained is still unknown to many doctors. It even came to the point during our appointment that our GI sort of released us. She told me if I wanted to get a 2nd opinion she would understand. If I hadn’t been to the conference that never would have crossed my mind. I was stuck in such a rut with Gage and Tinleigh that I never imagined seeking the advice of another doctor. We’ve done a blood draw on Tinleigh to check her cortisol levels while being on the steroid. Gage is having one as well. Our GI told me that if Tinleigh’s levels are low she really won’t know what to do with Tinleigh at that point. I think it is time to move on.

So we are starting a sort of new adventure. I am now GI doctor hunting. That seems so scary to me. I truly believe our GI cares for us and really goes out of her way for us at times. How will I ever replace that?

I am a believer that everything happens for a reason. The opportunity I had to go to the CURED conference was two-fold. It opened my eyes to move forward and find a new GI that can help my kids come closer to a cure. It also showed me how important CURED really is. CURED does much more than raise money for research. It brings people together in the industry from all over the world that want nothing more than to find a cure. It allows patients and family members to join together in person. They have a chance to hug, cry and feel like they’re not alone. It allows children suffering from Eosinophilic diseases come together to meet others going through the same tough life. Because of CURED I left feeling a renewed hope that seeing my kids tube free in the future will be a reality, not just a dream.

So from the bottom of my heart,

Thank you, Ellyn, for creating CURED and bringing this mom back to life in the fight to help her kids. Thank you Shay, and everyone, that makes the CURED conference possible.

October 26, 2017 Posted by | Charlie's allergies, daily life, Gage's allergies, LIVING, Tinleigh's allergies | , , , , , | 2 Comments

CURED 2017

A few short months ago Ellyn Kodroff, CEO of CURED, asked Nathan and I to speak at the upcoming conference in October. We had no plans to go, but something told me I was going to do this.

So Nathan and I went back and forth on making it happen. I had planned to take the kids to Ohio the weekend before to visit family then Nathan would join us in Cincinnati for the conference. Then everything got changed around and it ended up that I would be the only one going. Once I accepted this change, I happily embraced the fact I would have approximately 48 hours kid free.

I watched some of the previous speeches that parents had given at the conferences years before. Nothing was really coming to mind of how I wanted to present our story to a group of doctors, researchers, patients and parents. As the end of September quickly crept up I knew I needed to get busy, Ellyn wanted a copy of my speech as the October calendar rolled over. So one evening I sat down and just went to it. The speech just flowed out and by the time I was done I had 5 pages of what I wanted to share.

There was a problem though, I was only given a 15 minute time slot so I had to trim down this 25 minute long story. That part may have actually been harder than figuring out what to write. Then I had to add a slide show. Once I remembered how to use Power Point, the perfect pictures came to mind so plugging them in was no problem.

Writing the story ended up being no problem, practicing it deemed to be a problem. I could not make it through with out coming to tears. Okay, sobbing. I finally worked up the courage to read it to Nathan. We were both a mess. Day to day I’m really fine. I don’t really ever cry. Once I had our whole story laid out in front of me, all smooshed together in one bucket, it was very hard to face. I’m not sure if it’s the disease and everything the kids have faced. It could be all the crying I have suppressed over the years. I don’t know. Just a few days before the conference I decided to read it to the kids. What was I thinking?! I didn’t read it all because some of it would have been too much for them. What I did read though brought Charlie to tears. He asked me if that’s what it was really like going through all of it. So maybe it’s just that our story is sad.

So off I went to Ohio. I could write a whole blog post on my first time ever renting a car. I’ll save you the details and let you imagine how that went. 20171023_001320.jpg

I made it through Thursday listening to doctors presenting. I noticed that a few did seem a bit nervous. Why not? They’re human too. Though, it really didn’t help me relax any. Friday morning arrived. I was up at 5:30, 4 hours and 15 minutes until I had to speak. I arrived at the conference and found a seat, then a muffin and coffee. I ate a few bites noticing my mouth was already dry as the desert. I decided to get up and head out to meet some people. Maybe that would loosen me up a bit and make me forget about having to present. I met a few moms that I knew only through facebook. It was so exciting. It’s sort of like meeting a celebrity.

I made my way back in to sit down to try and force my breakfast down. As more people came in someone placed their belongings in the seat in front of me. That someone was The Dr Marc Rothenberg, one of the world’s foremost authorities on eosinophilic disorders. Yep, breakfast was over.

As the morning started and the first speaker was announced I was focusing on my breathing. I kept trying to relax. I kept reminding myself how important it was for me to share our story with a sold out room filled with doctors, researchers, pharma, patients and parents. I believe there were 200 people there. 20171022_233920.jpgI recently came across this scripture, it came at just the right time. I saved it as the screen saver on my phone. I think I read it a thousand times that morning before my speech. Maybe this scripture is meant for something much larger, but it definitely helped me that day.

As each speech ended and the time grew closer I really thought my heart was going to jump right out of my chest. I’m pretty certain the guy sitting beside me must have thought I was crazy as I kept taking huge deep breaths trying to calm down. Before I knew it, it was my time to shine. I already had tears in my eyes, my emotions were so high.

I made my way up on the stage, asked the lady who introduced me how to work the clicker for my power point, she showed me then left me to present.

As I opened my mouth the tears started coming. I took another deep breath, and said “Phew! Let’s switch gears for a moment as I share a patients side of things.” Then I went right into it. After thanking all the doctors for coming to share and wanting to learn I thought I was going down. I don’t know how I pulled it together, but I did. I could hear myself talking, I wasn’t rushing and I had magically memorized my speech. I was able to look at the crowd that I had feared and shared my family’s journey with every ounce of my heart. As I clicked through the power point I would glimpse at the pictures on the small screen in front of me and every one reminded me why I was doing this.

When I finally made it to the end I was crying. Getting those last few sentences out was the toughest. But, I did it. All I can remember is that I said thank you. Picking my papers up off the podium is a picture that is burned in my head. I didn’t wait for questions from the audience. I walked off the stage and gave Ellyn the biggest hug. I felt SO good knowing I did it. What I didn’t notice though was that everyone in that room was giving me a standing ovation. WOW! How did I do that with our story? I’ve also been told there wasn’t a dry eye in the room. 20171023_001346.png

So many people approached me and thanked me for sharing afterwards. A few speakers that followed even mentioned me. It was amazing. I have never felt so accomplished. I know I did the right thing by accepting Ellyn’s invitation. I had opened the eyes of the medical professionals. I let them see just a glimpse of life in a family with EoE. I hope I lit a little fire under them.

There was one gentleman, who I didn’t get his name. He approached me and thanked me for sharing. He then told me I am an amazing woman. To handle what my family has gone through and is going through I must be able to handle anything. He told me I am very strong and that I am a super mom.  It was like what all of you, my cheering section, has always told me. You know what? It felt good to hear it again after giving that emotional speech. Like maybe now I accept that title.

Thank you to all of my supporters who cheered me on! This was definitely an experience that isn’t over. I feel it maybe the start of something new.

Stay tuned. I am going to share more on the conference!

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October 23, 2017 Posted by | Charlie's allergies, daily life, Gage's allergies, LIVING, Nathan's allergies, Tinleigh's allergies | , , , , , , , , , | 4 Comments

2016

In January I took all 4 kids to see the GI, that was an experience.

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We know now what we’re doing with each one for the year.

Charlie: he is currently trialing shrimp. We thought it was going well until he had a reaction at dinner. Not a major one. Itchy bottom lip, itchy fingers and the outside of his throat was itchy. We will try it one more time to see if maybe there was some cross contamination with that bag of shrimp. Charlie will be scoped in March as long as we continue trialing shrimp. Next trial will be eggs, as in scrambled. He already passed eggs baked in things. After that he’s pretty much done. There isn’t anything else on his do not eat list that he doesn’t have and Ige reaction to. We will also be keeping a close eye during scopes as to what else is going on in Charlie’s esophagus.

Gage: He will continue food trials. He hasn’t grown much this past year and GI is concerned a bit about that. So we’re going to give him until June in hopes he’ll have a growth spurt. If he hasn’t grown much more then GI wants to look at his growth hormones and make sure everything is in check. His feet just grew a ton so I’m thinking he’s about to shoot up a few inches soon.

Tinleigh: Since Tinleigh’s last horrific scope we are going to let her go at her own pace. The doctor had a sweet talk with her and reassured her that everything will be fine. She told her that when SHE decides she wants to be scoped so she can move forward trying new foods then we will. Tinleigh is currently trialing black beans and it seems to be going okay.

Layon: She is such a picky little eater and some days won’t eat hardly anything. GI wants me to just treat her as a picky eater for the next 6 months. Keep introducing foods over and over and over. Do not let her graze and sit her at the table 5-6 times a day to eat. If she’s not eating in 6 months we may scope her again. Her favorite food right now is ice chips. She chews things then spits it out. It’s frustrating to have a “normal” toddler. Of course in the back of my mind I worry she has it. However, I have to try and stay positive and believe that she doesn’t.

February 2, 2016 Posted by | Charlie's allergies, Gage's allergies, LIVING, Tinleigh's allergies | , , | Leave a comment

Beef Pass

Charlie and I took a trip to the GI doctor for a scope and got to spend about 12 together. We had a good time. He talked my ear off about things like the planets, how to create a magnet that would push away eosinphils so kids with eoe could eat again and how he plans to be in the military one day. It was my birthday so he and I got to actually go out to eat at a restaurant just the 2 of us. It’s amazing to watch someone at a restaurant for what they remember as one of the first times. The menu was super overwhelming for him but he insisted on navigating through it alone. I let him. He finally closed the menu and said I’ll have a pancake. Puzzled, I asked him why just a pancake. He said well I would really like the quarter pound bacon burger. I smiled and told him to go for it. He said but it’s $9. I assured him it would be fine this time. 20151221_185545.jpgHe gave it his all but wasn’t able to finish. My heart was full just watching him eat it.

The next morning we arrived at the hospital bright and early as usual. This day Charlie refused the loopy medicine they give them before hand. He was going to try and stay awake through the whole procedure this time. He makes me laugh. 20151222_090555.jpgNeedless to say he failed his mission of the day.

When the doctor came out to talk about Charlie’s scope he sat down beside me and touched my arm. I instantly had an uneasy feeling. I also wanted to tell him if he had bad news to just give it to me, I can handle it. He told me there was no sign of EoE. Then he showed me Charlie’s esophagus pictures. 20151222_193752.jpgMy heart sank. Something is definitely wrong. What is all of that? The Doctor wasn’t sure. Fast forward to today I got a call from our GI. As the GI who preformed the scope had said there was no sign of EoE and Charlie’s counts were the same as they were back in May, 1-2, meaning beef is a pass. HURRAH! Now, onto that mess. They don’t know what it is. They checked for Barrett’s esophagus. That came back negative. For it to be Barrett’s he would have to have stomach tissue in his esophagus. Charlie just has esophageal tissue. Barrett’s esophagus typically occurs in people in their 50’s and 60’s that have untreated reflux. Charlie is on a high dose of reflux meds and has been for quite some time. The doctor wasn’t sure if they’re watching Barrett’s esophagus develop or what’s going on. They had never actually watched it develop in someone. We don’t want it to be Barrett’s though. Barrett’s can lead to cancer. Our plan is to let Charlie trial another food, either shrimp or eggs. He is currently eating eggs baked in things but not scrambled. He is scheduled for a scope at the end of March. We also upped his reflux meds. Even though he is on a high dose, upping it can’t hurt. Switching to another medication won’t make a difference. If he is developing Barrett’s it can be painful, we want to minimize that.

Could all of that stuff go away by his next scope? Yes. In that case we may never know what it is/was. So now we wait. I am to listen to Charlie for complaints of more chest pain, reflux symptoms, etc. He has no clue any of this is going on inside of him. Since we have no answers we don’t want him to worry or imagine symptoms he doesn’t really have. The doctor told me to put it in the back of my mind and not to worry about it. Yeah, right. We’ll see what’s going on and hopefully have some sort of better answer after his scope in March. If it’s still the same in March with the same biopsy results then we’ll check him every 3-6 months after to keep a close eye on it.

When I told Charlie today that he passed beef Gage was in the room. Gage started crying. He’s having a rough time still wanting all food. I think my plan of teaching them to be happy for one another was a good one, but in our reality can’t really happen. Gage wasn’t mad Charlie passed, he was just hurt it’s not him passing foods.

Say a little prayer for both boys please. 1 016

 

December 28, 2015 Posted by | Charlie's allergies, Gage's allergies | , , , | Leave a comment

Lunch please

Shaving cream fight

Shaving cream fight

Charlie has basically been on the same foods for a couple years now and successfully had clean scopes. One could say he is in remission. Charlie can eat wheat and dairy which are huge in our diets. What Charlie is lacking is proteins. I am at a loss for something new to pack in his lunch. I need some ideas! Please help him.

Here is his current do not eat list.

peanuts

tree nuts

soy (he does eat little amounts, such as if it’s the last ingredient in bread. I’m not talking soy lecithin either, I mean soy flour. Tofu? No way)

sesame

celery

peas

deer

beef

turkey

chicken

scrambled eggs (he can now eat eggs baked in things as long as it’s minimal)

pineapple

the melon family which includes pumpkin

banana

shellfish

froglegs

His list really isn’t bad at all. But he won’t eat chips or pretzels. He’s sick of apples. He’s sick of sun butter. He’ll eat pudding all day long but that won’t sustain him. Any ideas are welcome!!

 

September 14, 2014 Posted by | Charlie's allergies | , , , | 6 Comments

Happy Birthday Charlie!

Happy 8th Birthday  Charlie!

ry%3D400We had no idea what we were in for OLYMPUS DIGITAL CAMERAYou are full of life!OLYMPUS DIGITAL CAMERADefinitely all boyDSC02615Very much a little scientistDSC04683I love to listen to your thoughts and ideas. Always thinking outside the boxDSC05729I hope you know how brave, intelligent and loving you are.

DSCN1232I hope you forever keep those qualities.

DSCN3326I am so excited to see what your future holds. IMG_00000085For now, please just stay little.

January 27, 2014 Posted by | Charlie's allergies, Life according to Charlie | | 2 Comments

Dinner

What do my kids eat for dinner?

Tonight is a good example. I tried to match up what little I could just to make it easy on myself. DSCN3893Tinleigh’s plate is up top: ketchup, blueberries, green beans, pork burger cut up, her special french fries.

Gage: black olives, blueberries, pork burger and green beans. He will get hooked up shortly after to complete his calorie needs. He often says he feels full after a few bites, common in EoE kids.

Charlie: black olives, pickles, green beans, french fries and pork burger.

Tonight’s was easy, I didn’t let any of them give an opinion on what they wanted. 😉

DSCN3894Ten minutes in and Tinleigh has tasted everything. Is now bored and picking her nose. She chews then spits things out. Pretty sure it hurts her to swallow. This is how its been for a few weeks now. DSCN3895This is what the boys finished. Charlie left his pickles. Gage only ate his blueberries and a few green beans. So frustrating. He can finally eat and won’t. Swears he’s full.

DSCN3896Tinleigh ended up with a smoothie popsicle I made last night. She’s chowing on that. Popsicles are her favorite right now. She’ll be screaming hungry in a half hour as usual.

Damn disease.

January 2, 2014 Posted by | Charlie's allergies, daily life, Gage's allergies, Tinleigh's allergies | , , , | Leave a comment

Something’s fishy

It’s been a great summer. The only epi pens used were on Nathan. That’s just stubborn him going out to lunch where he probably shouldn’t.

We attempted a triple scope day this summer. Couldn’t have gone better. 20130815_142150The results of that day is where we are now.

20130815_160458

Charlie was clear. We had removed chicken from his diet. That did the trick. So his only meat was pork. We decided to give fish a try. He had never had it and went both ways on allergy testing for it. After a four-hour food challenge at the allergist’s office we are happy to announce Charlie is trialing fish! He LOVES Gorton’s fish sticks. I love how easy they are.IMG_20130930_105929

Gage’s scope results from that day were wonderful as well. Gage is now up to seven foods: blueberries, rice, strawberries,lemon, cocoa, tapioca and green beans. We really wanted to add a protein to Gage’s diet. The only thing we had left was fish. So after a negative blood test he did the same four-hour fish challenge at the allergist’s office. Let’s briefly touch on what happens at a challenge with such a highly allergic food. I bring the fish of choice ready to go. They first do a skin prick test with the fish that I bring in. Next they rub fish on his lips and leave it sit for 15 min. In the mean time I’m sitting there watching him like a hawk making sure there are no hives, coughs, itches or anything that looks like a reaction. They then have him try to hold a little piece in his mouth for 15 minutes. After that, they give him bites to eat every 15 minutes. Each bite increases in size double of the previous bite. Each bigger bite results in my nerves climbing through the roof wondering “is this the bite that will set him off into a reaction?” It’s very exciting each time we hear the timer go off, no sign of a reaction and they come in with another bite. Very exciting for a little guy who loves to go fishing but has never had the pleasure of tasting it. The mom side of this is absolutely nerve-wracking. Imagine feeding your child something you have done your best for the last 5 years to keep away from him. Lots of praying went on in that room. There were no tears allowed. It was Gage’s exciting day, this mom wasn’t going to ruin it for him. I’m not sure how I made it through that day, or Charlie’s. I did though, and so did they. Now they both get to eat fish. Gage doesn’t get to enjoy the Gorton’s fish sticks. However, I have found a wonderful rice flour based tempura I can use to make him fish nuggets. He loves them.  I love that he loves them.IMG_20130924_165944

The results of that scope for Tinleigh were horrible. On the highest dose of steroids she was still very inflamed and with high eosinophil counts. So we removed the last of the grains and meats which were rice, oats and pork. Our hopes were to get her to  drink more elemental formula. The pressure was on. I managed to start getting 26-28 oz a day down her. Which was great because with not much left for her to eat I couldn’t figure out what to feed her. Then she caught a cold and started throwing her cups of formula back at me saying YUCK!! Now she will only drink the unflavored mixed with some coconut milk in her bed in a bottle. Don’t worry, we’ve seen the dentist and her teeth are fine. We recently had her scoped again. Results were confusing, she had less than one in the mid and upper esophagus. Her lower esophagus was actually worse than last time, more than 50. WHAT?? How is that? We’re hoping that its reflux. Although that’s a high number for reflux. So we are starting her on a reflux med and will scope her in 8 weeks. We are also going to do a fish trial on her. Since she’s stopped drinking as much formula we need to get something else into her. Do I agree with this plan? Not 100% I don’t like her on the steroid, all we’re doing is masking anything that may still be effecting her from her diet. I hate adding foods when on steroids. Again, the steroid just masks problems. However, she doesn’t have enough food to thrive. She’s two, she has to grow. I did manage to help her gain some weight while I was getting her to drink the formula. In my perfect world we would add the reflux med, stop the steroid and re-scope in 8 weeks. That wold be the real truth of what’s going on with her.DSCN3424

So my kids are now eating fish, Tinleigh will trial it tomorrow. Who would have thought I would ever be preparing fish for these three? I’m so happy that its working out. I just hope and pray the scopes in December are still good.

October 8, 2013 Posted by | Charlie's allergies, Gage's allergies, LIVING, Tinleigh's allergies | , , , , , | 3 Comments

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