LIVING

With EoE, Allergies, Asthma and a G-Tube

Four Days

It’s been 4 days since my coffee pot broke. Luckily my new one showed up today. Today was so emotional draining I just knew I couldn’t go another day with out my coffee pot.

Last night I typed up a letter and attached it to an email I sent to the VP at the school. I was expecting her phone call at anytime from the moment I woke up. I was on pins and needles worried about how the call would go. I was also extremely worried about Gage and if he would have reaction in his classroom from something not getting wiped down good enough after the Valentines Day peanut fest 2017.

Today I was asked by a few different people “Why didn’t you say something right then?” and “Why didn’t you have them throw them away and allow Gage to stay?”. I’ve learned that since the time Gage was born my gut instincts with him are typically correct. In that instant my first thought was to get him out of there. So I did. As we walked down the hall I knew that anything that needed to be said didn’t need to happen in front of the class. I also knew Gage was safe by my side.

I called the school nurse first thing to let her know that if Gage came to her itching, coughing or feeling weird that she needed to call me asap. She was so upset by what had happened yesterday. She was in action all morning making sure the right people knew how wrong it was for there to be peanuts in a peanut free classroom.

Finally the VP called me. We discussed what happened, how it happened and what will be done. In the end everyone at the school is going to get a refresher course on allergies. Tomorrow I am going to ask that the line of action for figuring out what to serve at parties be changed. Which may include me becoming more involved at the school which I don’t have time for, however, with my kids life on the line I’ll figure it out. The phone call was a huge relief. The correct actions are being taken and hopefully a situation like this one will never happen again.

Something funny about this whole situation, Gage didn’t even know what an ice cream sundae is. When I told him his class was having ice cream sundaes for the party he asked my why were they waiting until Sunday to eat their ice cream. Poor kid was so confused. How sad is it that he didn’t know that?!

On the home front I also dealt with Tinleigh having an airborne reaction to my eggs I had for breakfast. I forgot her allergy meds at bedtime. I hate to think that one missed dose is all it took but I can’t figure out what else it could have been as far as timing goes.

Miss Layton woke up covered in eczema. It’s been in spots here and there but it really took off last night. She has it all down her thighs, her fore arms, groin and on the sides of her back. I know what’s coming, want to guess? She’s also not been eating much at all, toddler phase or does her throat hurt? I’m holding out until her scope in April unless she gets a lot worse.

I’m emotionally exhausted.

Tomorrow, coffee.

He tends his flock like a shepherd:

He gathers the lambs in his arms and carries them close to his heart;

he gently leads those that have young.

Isaiah 40:11

Come back and I’ll fill you in on Tinleigh’s new adventure in food. tinleigh

 

 

 

February 15, 2017 Posted by | Gage's allergies, LIVING | , | 2 Comments

Valentine’s Day Spoiled

Sigh. I dread holidays while the kids are at school. They play a game or two and have a treat. You would think that having done this for 6 school years I would be use to it. I’m not though. It always makes me sad that I have to take in a special treat for my kids. I wonder what they’re thinking as they see there friends eating things they can’t have. Especially the fun party treats. Does it make my kids sad? They’ve never expressed sadness to me. I do wonder.

Today was another typical Valentine’s Day party for Gage. We made the box, made the cards and I had the special treat ready for him. I knew he would get treats from his friends he can’t have and that’s another bowl of sadness. I do see him get upset as I pluck treat by  treat away from his pile of goodies. I keep catching myself lately saying “Your day will come”. I think maybe that’s how I can keep hope in their heart, and mine.

As usual the girls are in tow and we went to Gage’s class room for the party. When we arrived at the school Gage was waving to me from the nurses office. It was time for his last bolus of the school day. So we waited on him and then headed up together. When we walked into the room we stood near the door where the Guinea pig is as the kids played a game. I knew the class was going to have ice cream sundaes today so I didn’t want Tinleigh near the food table. I said hello to Gage’s teacher and tried to keep the girls near me. Once they had reached their max of waiting I took them down the hall to say hello to Charlie’s 4th grade teacher. When I turned around to head back to Gage’s room there he was standing in the bathroom entrance. He says to me “Mom there’s peanuts in the room.” I was a bit confused. I asked him what he meant and he said they told him they had peanuts for the ice cream sundaes. My heart crumbled to the floor right there in the bathroom entrance. I told him we would have to leave that it just wasn’t safe for him. He pleaded with me that they hadn’t exchanged Valentine’s yet. I told him to go ask his teacher if they were eating or doing Valentine’s next. So he went to ask as Tinleigh be-bopped into use the restroom. I walked towards Gage’s classroom but stayed in the hall so Tinleigh could find me. Gage came back out and told me they were going to eat then wash hands and then do Valentines. I explained that it still wouldn’t be safe for him because they would be touching their food and if someone didn’t wash good enough or got peanuts on something then touched his Valentine it wasn’t worth the risk. He looked sad so I quickly told him we would go buy a new video game. He was okay with that. As I stood in the hall I overheard the helper mom say “I just want to point out that there are peanuts here on the table so if you’re allergic don’t take any.” Did I really just hear that? Once Gage gathered his things and came into the hallway I asked him if there were any other kids in there with a nut allergy because we needed to get them out as well. He said he was the only one. Off we went.

We had to stop in the office so I could check Gage out. We briefly spoke to someone about what was going on and it was quickly made known to the assistant principal. What happened is not resolved yet.

1gageThe thing was though I had found a special ice cream bar that Gage could have. He needed to eat it before we left because it was melting in my bag. So we camped out in the entrance to the school and Gage enjoyed his “ice cream” treat.

I am upset that the event happened. It did bring me out of my allergy world bubble. I didn’t know much about allergies when our journey began. I didn’t have allergies and neither did anyone I knew. Now I know too much. There are still people in the world that aren’t familiar with allergies. Even though Gage’s class is peanut free and there’s a sign on the door I guess that mom just assumed it would be okay if Gage didn’t eat them. What she doesn’t know is that if anyone touched Gage with peanut residue on their finger, or if Gage touched something that has peanut residue on it, it would have been bad. It’s happened before and Gage went into a full blown asthmatic anaphylactic reaction. I’m sure the party mom wouldn’t want to witness one of those in front of a classroom full of kids.

Poor Gage. Even though he got a new video game out of the day he will always remember his 3rd grade Valentine’s Day party the one where “they brought peanuts”.

February 14, 2017 Posted by | Gage's allergies, LIVING | , , , , , , | 4 Comments

The Phone Call

In recent news you may have read about the little girl who died eating a peanut on a dare. http://www.foxnews.com/us/2012/01/12/girl-dies-after-friend-gives-her-peanut-on-playground/  I Immediately had a conversation with Charlie about how to handle a situation like that. His response “I will punch them in the face” I quickly let him know that’s not how to handle it, but I feel a little better knowing I’ve covered this with him.
On Thursdays Gage goes to preschool for 3 hours in the morning. I had Tinleigh down for nap and 10 minutes into my workout when the phone rang. “Hi Kara, this is **** at Gage’s school. I have Gage standing here with me, he’s fine, but his eyes are very puffy and watering. They made pine cone bird feeders this morning with peanut butter and bird seed.” At this point my heart started racing. I immediately asked if he was breathing ok, he was. I told her to give him 2tsp of Benadryl and I would be right there. As I’m heading out the door the phone rings again. This time it’s his teacher. They couldn’t find his Benadryl in his bag. There it sat on my counter right beside the sink, we had used it the night before. I grab it and race to his school 3 min away. I walk into his little room and his back is to me. As he turns around I thought is this my kid?!  His poor little face. His eyes were little slits and water was just pouring out. I immediately give him his medicine and start asking questions. The response I got was “We thought since his disease was more internal it would be ok if he touched the peanut butter.” I  wanted to scream. They also told me he washed his hands right after he was done and they had done this an hour earlier. They said they hadn’t noticed it until chapel. I could tell by how bad it was it didn’t just happen,but instead they weren’t really paying attention to him. I asked Gage if his eyes hurt when he went to gym, he said yes. So it was an immediate reaction. I explained to his teachers and the director that Gage had never eaten a peanut because he tested positive before he was old enough to eat one. I further explained because he hadn’t eaten one before we didn’t know the severity of what his reaction would be. Obviously Gage is pretty allergic to peanuts and it’s more of an allergy than related to his EoE. As we were walking out they were taking snack in to the kids, nutter butters. UGH!  I always pack Gage’s snack so he wouldn’t have eaten the nutter butters, still, why would you feed a group of 3 year olds peanut butter?!
Gage was very embarrassed about how he looked. I drove him right to Nathan’s office to get his opinion if more needed to be done. The whites of his eyes were even swollen. Gage refused to get out of the car so I had daddy come out. We agreed to just keep giving him Benadryl unless he broke out in hives, his eyes got worse or his breathing became effected. Home we went.
I made him a little bed on the couch and let him eat lunch there while watching cartoons. I was almost afraid to feed him anything in fear another allergy would kick up and make things worse. After an hour I gave him another 1/2tsp Benadryl because he wasn’t looking any better. After he ate and another hour passed he was getting tired. Since Tinleigh is loud I thought he would rest better in his own bed. He asked to sleep in mommy’s bed which is something we never do, so I agreed. He went right to sleep and I checked on him every 10 minutes. Even with his eyes closed he looked miserable.

After nap

His teacher did call to check on him that day and sent me a text later in the evening. I just kept repeating that there were to be no more peanuts in the room as Gage could have a bad reaction.
It wasn’t until 36 hours later that Gage looked normal. We had a talk with him that he should never touch peanut butter again. He’s 3 though, if his teacher says do this, he’s probably going to do it even if peanut butter is involved. So we’ll add peanuts to his outward reaction list. I’m so thankful he didn’t try to taste it.
Charlie wanted to know why they didn’t use Sunbutter. I still don’t know why they didn’t check with me first. Gage didn’t look normal until 36 hours after it happened.

The next morning

January 15, 2012 Posted by | Gage's allergies, LIVING | , , , , , , , , | 2 Comments

Sunbutter!

SUNBUTTER!

Our new best friend.
http://www.sunbutter.com/

I have a jar of peanut butter in the highest cupboard in the kitchen for myself. I LOVE it. Since the 3 men aren’t that sensitive to it I do enjoy it every now and then. The boys actually always ask to smell it when I have it out. Talk about breaking your heart. “yes, here honey have a big sniff but you can’t eat it!” I hardly ever actually eat it in front of them. They just caught me one day.

A friend had mentioned sunbutter to me and I instantly looked it up and found a location. Bingo, right in our small hick town.

Once we got it home I gave Charlie a spoonful. He was in love. I made them both up a Sunbutter sandwich. Charlie ate his right up.

Gage’s was actually on light rye crackers.Gage was a little iffy about it. Might just be beacuse he’s 3.

I am so excited for Sunbutter.

August 23, 2011 Posted by | Charlie's allergies, Gage's allergies, LIVING, What's for dinner | , , , , , , , | Leave a comment

EoE, It’s in the family

I had mentioned not too long ago my niece Ellie was recently diagnosed with Eoe. Here is her story written by her mom.

My daughter, Ellie, was diagnesed in mid-July, at age 2, with EoE.  Her diagnosis suprised me because she does not suffer from the “typical” EoE symptoms.  Ellie was born with a cleft soft palate.  Early on she was on reflux medicine because she constantly spit up; however, once she had her repair surgery, the spitting up stopped.  Ellie has always been a good eater, especially compared to my older daughter.  At 14 months, , Ellie had her first, and only, “true” allergic reaction.  After one lick of cake batter, the area around her mouth broke out with hives.  I had her allergy tested for the top eight.  She reacted to eggs and peanuts. For reasons, I cannot remember, I felt like she also had a milk allergy; however the skin test came back negative.  By testing time, Ellie had already started soy milk and liked it so much, I never switched her back. 
Ellie has never had a solid bowel movement.  Her butt is and always has been red, had sores, and irritable.  Though she was always a 12 hour night time sleeper, starting around Februrary of this year, she began waking several times a night.  Around this time, too, Ellie’s eczema, which we have battled since infancy, became a permanent fixture.  I have tried four steroid topical creams but none have worked.  Ellie has asthma, but it is only noticeable when she is sick.  She is a thriving child that does not choke, vomit, or ever appear to be in pain. 
So why have her go through an endoscopy and colonoscopy?  I had been telling her ENT that I believed, as a mom, that she has more allergies because of her constant diarrhea, sores, etc.  Of course, I mentioned that my brother and two nephews have EoE.  My concern was that she had EG, EGE, or EC, but not EoE.  After being referred to a local GI and being scoped, I learned that I was wrong, Ellie does have EoE.
After her diagnosis, she went egg, peanut, nut, wheat and milk free.  Blood work indicated a wheat and milk allergy, but the skin test did not confirm.  No other allergies were confirmed with a skin test.  Since taking her off wheat and milk did not clear her eczema, last week I removed soy from her diet.  To my excitement, her eczema has improved tremendously. 
I am still confused since she is not testing positive for many food allergies, but I am hoping to get a greater clarification when I meet with the doctors at Cincinnati’s Center for Eosinophilic Disorders (CCED) in September.
When Tina called me with Ellie’s news I was so upset for them. It angers me that kids are dealing with this and there is no cure or clear answers for anyone yet. We definitely know that EoE is in our genes. Leads me to wonder what will this disease do when my boys have kids. Tina doesn’t have EoE but could she be a carrier of the gene like women do for colorblindness. Will Tina’s other daughter carry the gene? There are a thousand questions and I hope someday soon we get some answers.
Thank you Ellie, and Tina, for sharing.

August 16, 2011 Posted by | LIVING | , , , , , , , , , , , , , , , , | Leave a comment

   

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