Hey EoE! You make Halloween yet another scary food holiday for my kids.
Looking down the candy aisle makes every EoE mom feel a huge range of emotions I’m certain. I haven’t yet decided how we’ll handle trick or treat this year. Will we trade in candy for a toy? We could also trade in candy for safe candy I have purchased. I dont feel I know the neighbors well enough yet to introduce them to our world of allergies. I still have time to figure it out.
I hate candy aisles.
Layton has a thing about trialing food.
I’m not sure if it’s texture, taste or she’s just having a hard time getting use to eating food. By about the 8th bite she starts to gag like she doesnt like it. Then the 3rd or 4th sitting with the same food she gags right away and refuses the food. So we’re just doing one two pack of food and moving on. We just finished peas and that went well, until she gagged and shivered.
Today she tried pears. Of course Tinleigh is right there beside me observing. She asked me if she could eat pears. I told her no. In her two year old jargon she explained to me how she could.
Tin: I know!! Layton have teeth?!
Me: No, she does not.
Tin: My get my teeth out. My be a baby. Then my eat pears too!!!
Me: Tinleigh your teeth aren’t coming out and that wont make you a baby. It doesnt work like that.
Tin: yeah huh mom. My have no teeth and my eat pears.
I answered her with an “okay sweetie”. I just didnt feel like explaining everything. Trialing Layton on foods might be a lot harder than I first thought. Now, not only do I have to keep a watchful eye out for reactions. I also have to keep Tinleigh from eating the baby food and start explaining to her why she can’t eat what layton eats. I wish I could say I see this going well, but I see some tantrums in our future.
I had the honor of being asked to do a guest blog for Cinicinnatti Children’s about living with EoE.
Check it out HERE
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.
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)
scrambled eggs (he can now eat eggs baked in things as long as it’s minimal)
the melon family which includes pumpkin
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!!
A little story about me.
Summer of 1998, I was 21. I was currently in college and headed home which was a little over an hour away. It was before cell phones so the only distractions were wild animals or changing the radio station. I was coming up behind a semi and got in the right hand lane to go around him. Just as I approached the back of the trailer to pass him the vehicle ahead of me in the right hand lane jumped in front of the semi and turned right. This caused the semi to slam on his brakes and jack-knife. To jack-knife is when the semi itself turns but the trailer stays straight so it’s now in an L shape. I slammed on my brakes and headed right for the semi. Eyes wide open, arms locked straight out, both feet on the brake I knew I was about to die. I debated for a flash second if I should keep my eyes open or close them. I kept them open. The time waiting for the impact seemed almost like forever, but was too quick. SLAM. I made contact. I screamed then looked around. Did anyone just see that? Shaking and scared to death, probably in shock, I got out of my car and just stood there crying. I remember the truck driver jumping out, yelling at someone to go get that car that cut him off then running over to me and just looking at me like he was in shock i was standing there. I was fine. My air bag had come out but I didn’t hit it. My foot was bleeding, I cut it on the pedal. Other than that I was fine. Later of course I had neck problems and some back issues. One of the scariest moments of my life.
About a month later I was home from college and had gone out for a jog. We live in the country. I’m talking no neighbors for a few miles, nothing but fields and Amish around. It was starting to become dusk by the time I was on my way back. I was approaching an intersection and something just made me pick up my pace and go a little faster. Almost like I was being pushed. I didn’t get 100 yards from the intersection when a car passed me then CRASH! There was another car coming to one of the stop signs and the two collided. I really don’t know what happened as they were behind me. I immediately turned and ran back. There was a toddler in a car crying. I could see the driver was unconscious. For some reason I just ran right to that little guy and got him out and held him. What I didn’t know was that when the cars collided they knocked out the power line on the road including power to my parents house. It was now dark. I could see a car coming and slowed. My mom jumped out and was screaming my name. I yelled that I was fine but this lady was hurt. My brother was with her and tended to the driver. When the power went out at their house they thought I had been hit. Once 911 had been called and medics arrived we left.
I had plans that night. I was going to go out with Nathan, we were dating back then, and some friends. I walked in the house and all my dad said was “You’re not going anywhere.” Being that I was 21 I was certain that I was going to leave. So I hopped in the shower and started getting ready in the dark. My older brother popped in the bathroom laughing and said “You’re not going anywhere.” I’m sure we bickered back and forth but he really thought this was funny. I walked out into the family room and again was told I wasn’t leaving. I said that I was, that I had plans and I would see them later. For some reason they let me walk out. Then I realized they had taken the keys out of my car. I checked every vehicle. All the keys were gone. We lived in the country and back then you just left the keys in them. Now I realized why my brother was laughing so hard and I was furious. I stormed back into the house. I never argued with my dad, he was always too intimidating. This time I just remember being so mad. I asked for my keys and he said no. Then he told me I better not call anyone to have them come get me. I was 21 for goodness sake! He couldn’t do this. But, he did. He reminded me of the car accident I had just had and then the one that happened this night and he wasn’t about to let me go anywhere. I was fuming. To this day my brother and I still laugh that dad took my keys at age 21.
Today I get it. Now that I’m a mom with my own kids I finally get it. He didn’t want anything more to happen to me. I’m sure it scared the socks off him. I’ve been there with my own kids already, not quite the same situations of course but I’ve been there. I know that feeling.
Thank you for teaching me to respect your words and that you were just protecting me. I can only pray that I can teach my kids to respect and listen to me, as well as other adults, the way you taught me.I think that’s something that has been lost in today’s world. I’ll try my hardest just for you Dad!!
Happy Fathers Day. I love you!
I’ve been wanting to do a video for a few years now and have never found the time to do it. Even now I’m typing one handed and feeding Layton. I stayed up until 2am last night after the kids went to bed and got a video made!! Then of course I had issues converting it and uploading it.
Here it is! It shares a quick glimpse of our journey with EoE from January 2010 until today.
You are just a few clicks away from helping my kids one day be able to go to birthdays and eat what the other kids are eating.
One click away from my kids going out for breakfast on their birthday.
One click away from going to the movies and buying a treat.
One click away from a family vacation, which is virtually impossible unless i pack an entire trailer of food.
One click away from my kids going to the dairy bar or getting a treat from the ice cream truck.
One click away from me not having to pack a duffel bag of food every time we leave the house for more than a few hours.
I think most importantly, one click away from me cooking one dinner for my family that we can all sit down and enjoy together.
You’re also one click away from helping many families put an end to the staggering grocery bills.
One click away from helping end the outrageous hospital bills that are never ending because of the maintenance of this disease.
Please help us find a cure.
Forgo you’re expensive coffee tomorrow and donate that money to CURED.
Donate what your family would spend when you go out to dinner.
Donate the cost of the candy your child picks out in the grocery line that mine can’t eat.
Every little amount helps my kids come closer to one day being able to eat a normal healthy diet.
Lucky Charms? Eggs and toast? Bagels and cream cheese?
What did your kid have for breakfast?
Mine had a sucker and a bag of elemental formula.
It’s awareness week and that’s just we’re going to do, bring awareness! The boys are all geared up and ready to spread the word.
Actually they’re pretending to be the Wild Kratt brothers.
I pulled these facts from APFED
A group of uncommon chronic illnesses, eosinophil (E-o-‘si-n-o-“fil)- associated diseases, are rapidly emerging as a healthcare problem worldwide. Yet, many patients suffering from these disorders go undiagnosed for years due to a lack of information or awareness of these diseases.
What is an Eosinophil?
A type of white blood cell associated with allergies, parasites, and cancers.
What are Eosinophil-associated Diseases?
– High numbers of eosinophils accumulate in body tissues causing inflammation and damage
– Classified by body tissue where eosinophils accumulate
– Diagnosed and monitored by tissue biopsies
– Chronic diseases requiring long term treatment, with no known cure
– Debilitating diseases leading to missed work, school, social outings
– Delays in diagnosis are common
Eosinophilic Esophagitis (EoE)
– Causes inflammation and damage to the esophagus, affecting the ability to eat
– Estimated prevalence of roughly 1 in 1,800
– Increasing in prevalence over the past 10 years
– Patients may depend on steroids or medical nutrition therapy, sometimes through a feeding
Eosinophilic Colitis (EC)
– Causes inflammation and damage to the large intestine (colon)
– May be misdiagnosed as Irritable Bowel Syndrome (IBS) or Inflammatory bowel disease
– Patients may require restricted diet therapy, elemental formula or chronic steroids
Eosinophilic Gastroenteritis (EGE), and Eosinophilic Gastritis (EG)
– Causes inflammation and damage to the stomach and/or small intestine, often misdiagnosed
– Estimated prevalence of EGE and EC combined is 1 per 3500
– Causes severe abdominal pain, forceful vomiting and/or diarrhea
– Treatment may involve a limited diet, feeding tube and/ or steroids
Hypereosinophilic Syndrome (HES)
– Diagnosed by very high numbers of eosinophils in the blood and tissue
– Causes potentially fatal damage to one or more organs in the body (heart, lungs, gut, skin)
Eosinophilic Granulomatosis with Polyangiitis (Churg-Strauss Syndrome)
– Eosinophils cause damage to small to medium blood vessels (vasculitis)
– Patient may initially be diagnosed with severe asthma
– Causes potentially fatal lung, heart, brain or gastrointestinal damage
– Estimated prevalence is approximately 5 cases per million people per year, with a rate in
asthmatics of as high as 80 cases per million per year.
– Eosinophils build up in the connective tissues that surround muscles, nerves, and blood vessels.
– Arms and legs are primarily affected. Symptoms often include pain, swelling, and thickened and pitted skin that resembles an orange peel.
– While symptoms typically resolve on their own, some cases require corticosteroids and immunesuppressing medications. In many cases, EF resolves in a few years, however, some people have reported symptoms for longer than 5 years, or have reported symptoms resolved and then returned later.
– Eosinophils cause injury and inflammation to the bladder.
– Reported to be more common in males, and may affect both adults and children.
– Symptoms may include painful urination, blood in urine, and pain in the lower abdomen.
-501(c)3 non-profit patient advocacy organization for those living with eosinophil-associated
– Mission is to passionately embrace, support, and improve the lives of patients and families
affected by eosinophil-associated diseases through education and awareness, research, support,
– Raises funds for research of eosinophil-associated diseases through competitive peer-reviewed
These are three beautiful faces of EoE. They shouldn’t have to suffer. Help us find a cure.
It all started April 30th when Nathan left for a long business trip. He was going to be gone for 10 days straight.
I was fine with it.
I could handle things.
I’ve got this!
Hey it’s one less dinner for 10 days! That’s enough to make me happy. That means less groceries and less dishes to clean up!
The kids and I did great the first few days. The only trouble I had was that Gage’s formula and feeding tube supply shipment came 4 days late. Since Tinleigh uses the same exact stuff we were covered. That weekend Gage started coughing. I figured he was getting a cold. I remember Nathan’s comment when I told him “Of course he is, I’m away on a trip”. It never fails that the kids get sick when he’s gone. I tried not to worry about it and we went on with our days.
Tuesday morning Gage was wheezing, Charlie said his throat hurt and Tinleigh was coughing. Well the last two months Charlie has said his throat hurt and he ended up having strep. So I called the doctor and off we went after Gage had a breathing treatment. They did a rapid strep test and it came back negative. PHEW I was relieved. The doctor raised an eyebrow at Gage hacking in the corner. I said he was fine we were on nebulizer treatments. No big deal for us.
I sent both boys to school on Wednesday. Tinleigh woke up wheezing so now she was also on breathing treatments. Around noon the pharmacy called me with a prescription for Charlie. That’s odd I thought. Then it hit me! OH CRAP HE HAS STREP! I immediately called the doctors office and spoke with the nurse. Yes, Charlie’s culture we sent out came back positive you need to go get him from school right now. So I called the school and asked that they get him ready. Loaded up the girls and off we went. When I arrived Charlie was bouncing around the nurses office playing with a blown up rubber glove. She said he sure doesn’t look sick. I said I know but the doctor said he is. So now Charlie can’t return to school until he’s had his meds for 24 hours, which would be friday. What made me nervous about him being in the nurses office were the two pale white sickly little boys laying on cots. What ever they had I knew we didn’t want.
Thursday Charlie had to stay home. He also started running a slight fever. Well crap that puts him out of school on friday as well. He wasn’t feeling too horrible. His throat never swelled, just felt like wood chips in there he said. I don’t know if he’s just tough as nails or if it really wasn’t that bad. Tinleigh was still wheezing and starting to cough more crud up.
Friday Gage tried to stay home but I figured it was just because Charlie got to stay home. He was fine when I dropped him off. Layton, however, had started a little fever as well. That made me nervous. Then around 12:30 the school called me to come get Gage, he puked. OH NO! I was so hoping he was just stuffed from his feed and that made him puke. That wasn’t the case. Gage was the fifth kid they had sent home that day. I got him home and made him a bed on the couch. He couldn’t even keep down a tablespoon of water. After about 6 hours he was begging to eat and felt fine. It was quick but violent. I called Charlie’s school nurse and asked her about him running a fever. I didn’t know how he could have a fever after being on antibiotics for strep. She broke the bad news that unfortunately it wasn’t related to the strep but probably the stomach but going around.
That night Nathan arrived home. Thank you Lord. I felt like I was running ragged. No breaks. I was barely getting showered. Between feeding tubes, mixing formula, holding the baby, feeding the baby, doing breathing treatments, it was a lot. BUT I DID IT! Ten days on my own.
That evening we had a call about a showing for our house, it’s for sale. I laughed and explained how sick all the kids had been and if anyone came in here they would surely walk out with something. So they said they would be in touch Sunday to figure out what day would work next week.
Saturday morning Tinleigh woke up and puked in bed. Tinleigh continued to puke until about 1pm. Really violent and bad just like Gage’s but only for about 6 hours. Layton was still running a low fever. That night we got everyone into bed and I had a beer. Just one. I told Nathan I had a funny feeling in my throat while drinking it, almost like an allergic reaction. It was strange. Layton woke up around midnight to eat. Charlie puked at 2am. Layton woke back up at 3:30am to eat. Tinleigh woke up around 4 I can’t remember why. Then Charlie was up again at 6 vomiting and on the toilet. Layton was back up at 7 and Tinleigh woke up for that day at 8. This mothers day wasn’t starting out very well. I think it was around the 2am vomiting that I realized my allergic reaction was actually me getting strep. HAPPY MOTHERS DAY!
So i got up with Tinleigh and got things rolling as far as getting them all set with food so I could go to the urgent care. I left the house and went to one in a neighboring town because ours wasn’t open yet. Sorry ma’am it’s a two hour wait. Are you kidding me it’s mother’s day? I left and drove back to our town. I ran to the store for a few things, dropped them off at home then went to our urgent care that was just opening. I was second in line. My throat hurt so bad I couldn’t talk or swallow. It was so swollen. Well I got quickly bumped to third position because an older man fell outside and hit his head on the cement. Once I got back to my “room” someone else got pushed in front of me because she passed out in the waiting room. They were both taken by ambulance to the ER so I did feel bad for them. Darn it though, I was in pain. They swabbed me. I explained how sick my kids had been and how Charlie and I had strep just a month earlier. My rapid strep test came back NEGATIVE! I seriously almost cried. The nurse had swabbed me but the doctor still wanted to take a look. I opened my mouth and her words were “holy cow! That’s swollen, you will get an antibiotic for that!” phew. They didn’t even bother sending out the culture. Both times I had it recently it wasn’t the sides of my throat that swelled but instead the top part. It was so swollen it hung down past that thing that hangs down in the back of your throat. I left and got my prescription – three pills three times a day.
I wanted to crawl in a hole for the day I felt horrible. I knew though how much work it is taking care of all four kids plus they all felt like crap. Layton was now coughing. Tinleigh was now very congested. Well except Gage. He felt fine. Just very left out and lonely. Poor guy, all he wanted to do all weekend was play with daddy and we had too much going on for them to get some good one on one time. By that evening I was able to swallow a little and I could talk again.
Monday morning. Once again Charlie had to stay home for 24 hours after he had been puking. As I loaded them all up to take Gage to school he said mom my throat hurts. Now he and Charlie had been playing for a good hour before school. No signs of sickness from either of them. Layton and Tinleigh though both sounded horrible and I was going to call the doctor for an appointment. I said Gage do you want to go to the doctor and get swabbed for strep? Thinking that would freak him out and he would say no. Of course he said yes. So I made an appointment for the three of them and off we all went to the doctor. They swabbed Gage first thing. Then the doctor listened to Gage’s lungs. She then asked about his wheezing. I said he’s wheezing? She said yes and she wanted him to do a breathing treatment right then. Okay sure. Then as she was typing in her computer she says OH! He has strep. Well shit. Swab Tinleigh too please. So she did then she listened to Tinleigh, which is why I had her there. Let’s give Tinleigh a breathing treatment as well. They both sound very bad and I worry about pneumonia at this point. WHAT?! Please don’t tell me that. So Gage and Tinleigh both did a breathing treatment. Gage sounded fine after his treatment. Tinleigh still had some crackling in there. Our doctor was worried about Tinleigh and told me she could really go either way at this point so I needed to keep a close eye on her and keep her on breathing treatments every four hours. Luckily Tinleigh’s strep came back negative. However, since we have it in the house and Tinleigh sounds like she does the doctor wrote her a scrip as well to play it safe. Layton’s congestion was still all in her head. Being so young though it is dangerous and could turn very quickly to her lungs just like with Tinleigh and Gage. So now i’m on the watch for that to happen. I hate being on the verge of super bad illnesses like that.
Home we went. I had a friend get meds for me as I took the kids home and got everyone settled. I had to get a game plan in my head because we had a showing scheduled for wednesday at 5pm. I wasn’t back on my A game yet but was starting to feel much better.
Tuesday Gage had to stay home because he needed to be on his antibiotic for 24 hours before returning to school. Tinleigh was INCREDIBLY whiney and stuck to my leg. I wanted to scream. I had so much to get done to be ready for Wednesday evening. So between her, the baby and Gage I managed to get quite a bit knocked out and ready. Then that night Tinleigh puked again. She couldn’t have picked a better time. I had Charlie’s dinner ready. Layton was crying to eat. I then had to throw Tinleigh in the tub. Gage didn’t want hooked up he wanted fish for dinner. It was total chaos. Of course this was all before Nathan got home from work. I was going crazy.
The next morning both boys went to school. I had a game plan. Unfortunately it didn’t happen. Layton didn’t sound good and I needed her to be seen. Our pediatricians office is 35 -45 min away so that cut a chunk out of my day of preparation. Luckily her lungs were still clear. She was having post nasal drainage and had a touch of the flu. Imagine that. We ran back home and I had to re-evaluate what I thought was important to get done. Tinleigh was still super whiney and clingy. She had vomited again that morning. Both times though it was formula and black olives so i’m beginning to think she can’t tolerate black olives. Three o’clock I left to get the boys from school. We ran back home and a friend came over to help me. Gage had ball practice so we would leave a few minutes before 5 and head there. Well I had everything ready to go, kids were fed and the house looked presentable. About a half hour before we left it started raining. Well in my panic of cleaning I didn’t notice the boys were out playing in it. I was so mad. They got changed and at ten till we left. IT WAS POURING at this point. There the people sat in the driveway ready to come in. So I loaded the kids in the car and we headed to walmart. I knew practice had been canceled. No sooner did I get everyone in and headed towards the diapers did I get a phone call. “Kara, there’s water coming in the laundry room from outside”
I rushed home. I called a neighbor and asked if I could bring the kids over. I quickly ran in the house to see the damage before running them over. That did it. I finally had a break down. Seeing a few inches of water in my laundry room and along two walls of our family room did me in.
This super woman cracked.
I stood there holding Layton and cried. Only for about thirty seconds though because I had to get this taken care of. I rain the kids to the neighbors house then rushed back home. Luckily the agent showing the house moved the boxes out of the laundry room. They were boxes of Gage’s and Tinleigh’s formula and supplies. I will be forever grateful she did that. I sent her an email later that evening thanking her and explaining what she had saved.
The rain was so hard and fast the drain outside the laundry room door couldn’t handle all the water. So into our house it came. (Luckily, not our problem. It’s a rental and no thank you we will be buying another house. Not this one with water issues.)
So I hope this explains my lack of blogging, yet again. Maybe these last few weeks of May will be enjoyable.
Charlie did inform me next week is River Monster week on animal planet.