LIVING

With EoE, Allergies, Asthma and a G-Tube

Vacationing With Food Allergies

Gearing up for the trip Adventure Snowman brought us I was excited. However, there was a big pit in my stomach worrying about the kids being able to eat. How would I keep them fed and safe?

My first plan of action was to make sure our hotel rooms had a kitchenette so I could cook something if needed. Next, I packed plenty of snacks. So I devoted a Rubber Maid container to all snacks. I also threw in things like Tinleigh’s safe noodles, grits and syrup so I would be able to make them for her in the hotel. Our condo had a full kitchen as well. Having the snacks handy when we stopped for gas was great because it also saved us on gas station treats. I made sure and packed feeding tube formula ready to go for feeds during the car ride.

I knew we would be going out to eat. It scared me every time. I was so nervous to let them eat anything. I always knew how far the closest ER was. I had 4 epi pens and a bottle Benadryl on me at all times.

img_7655Our first night we stopped at Applebee’s.  The kids have never eaten there before. It was Christmas night and surprisingly there was a wait to be seated. Once we finally had our table I told the boys to figure out what they wanted and then I would make sure it would be safe. Charlie ordered chicken strips and fries. He would be fine. Gage wanted the kids steak. I explained to the waitress that Gage had food allergies and asked if they were able to cook his steak in a cleaned off area or a separate skillet. She left to go ask the chief. She came back and explained the chief felt they were super busy, which they were, and he didn’t feel safe about worrying about making a special steak that night. I said I completely understood and Gage went with a double order of mac n cheese with yogurt and fruit. I was honestly relieved that they were so honest. Now, I could have put up a stink that they wouldn’t oblige to what we needed, but why put Gage’s life at risk? He filled his belly and was happy. He understood the situation.

20181226_184043Next up was Augies Alamo City BBQ Steakhouse. If you ever visit San Antonio this is a must. The set up is sort of a school cafeteria. You start at one end of the line picking your sides, then move down to the next station where you pick your meat. Lastly is pickles, chips, dessert and you pay. Before heading out we fed Tinleigh full of formula so she wouldn’t be hungry. I packed her a few snacks in my purse. I packed Gage a few things as well just in case. We looked over the side items, mac n cheese was the only safe thing for him among the baked beans and different types of potatoes. He then selected the pork ribs for his main course. It didn’t hit me until they were slicing it that they cut all the meat in the same spot. This would be problematic for Nathan as he is deathly allergic to chicken. I got Gage situated with his food then let Nathan know about the cutting area. Tinleigh spotted some lays chips and asked for some iced tea. She was set and happy. Nathan risked them cutting his meat in the same area. I was having a mini panic attack. In the end everyone was fine! Not an itch in site. I highly recommend the pork ribs if you visit. Everything was delicious though.

20181227_123524Our second day in San Antonio we toured all day. I had plenty of snacks for everyone in my backpack. We decided to hit Margaritaville for lunch.  I had never been to one before so I had no clue what we were walking into. Luckily the kids menu had ribs on it and that was what Gage wanted. They were delicious. We did have a hiccup with Tinleigh and Nathan here. Tinleigh was able to order a cup of applesauce which was super exciting for her because it was her new food and they actually had it. Problem was they brought it out on Charlie’s plate full of breaded shrimp. We explained why it was a problem. They happily brought her a new cup. I washed it off before giving it to her in fear they just took the cup then brought it back again. Nathan had a Cuban sandwich which is all pork but something got to him. We’re not sure what. A few Benadryl later he was fine. 20181227_123546That night we were all exhausted from touring San Antonio. We saw the Alamo, rode a boat on the Riverwalk, went up the elevator in the Tower of America’s and visited the Pearl. So we stayed in and ordered pizza. Luckily Gage’s safe and favorite, Pizza Hut, was right around the corner. So we got his safe pizza and found a local place for us to try.

The next day we headed further south to South Padre Island. I wasn’t quite as prepared as I had wanted to be. By the time we got there they were all starving. We stopped at Walmart before crossing the bridge onto the island. I let them all pick something to eat. When we arrived at the condo Charlie jumped out of my parents car and came running to me to let me know he had just eaten peanut flour. He kept saying I’m fine. He had picked out the Keebler coconut cookies that are similar to the girl scout cookies and none of us had read the bag. When he started eating a cookie he also started reading the ingredients. After one bite he threw the cookie out the car window. I just stood there staring at him with lots of thoughts going through my head. He didn’t feel a thing. So I told him the instant he did he needed to let me know. My instinct said to epi pen him, but he wasn’t feeling anything. He never did have any sort of reaction. This led to new blood work being done now here at home to see where his peanut allergy is. No results yet.

Our first night on the Island we went to an amazing seafood restaurant called The Sea Ranch. This was my first allergy experience of feeling just a little bit like my family might feel. Since having the kids and developing my own allergies I had never really been in a situation where I couldn’t eat. The Sea Ranch menu only had a handful of things I could eat. It made me feel sad for them. I now had a little better feeling of their side of things. It didn’t feel good. So now that I was already feeling some emotions we had to figure out what the boys could eat. Charlie wanted the Mahi Mahi and I was fine with that. Then Nathan ordered appetizers. He chose a dozen oysters, jumbo shrimp cocktail and calamari. These appetizers looked amazing. The waitress also brought us some bread. Everyone grabbed a piece and I asked to see the ingredients for Gage. Good thing I did, There was egg flour in the mix.
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Once Charlie saw all of this he told me he didn’t need the Mahi Mahi anymore. He was also super excited to try an oyster. I wasn’t so excited about that. Having been able to always eat shell fish with out trouble Nathan and I finally agreed it would be okay. Apparently though my nerves were showing because Nathan kept asking me if I was okay. Charlie picked up an oyster as Nathan explained how to eat it. I can’t believe he tried it. He LOVED it. 20181228_183314

See the calamari on that plate? It was giant and they all said it was the best they had ever had. As everyone was snacking on the appetizers Nathan looks at me and says oh my gosh you can’t eat any of it! He then quickly tried to find something I could have. I told him I was fine. It was the perfect opportunity for me to give Tinleigh a bolus. She came and stood beside my chair and we began. Tinleigh has no issues with her tube and feels quite comfortable doing this in public. We definitely got a lot of looks while doing it. She didn’t notice though. We ordered dinner and Gage chose a steak. Two bites in and his ears were itching. I gave him a Benadryl and then he told me his lip felt puffy. I could see it was a little red. He and Charlie went to the restroom so he could rinse his mouth out. The Benadryl helped and Gage ate all the crackers off the table the waitress had brought since he couldn’t eat the bread. We were bummed about the steak but the reaction was minor. My cucumber martini got me through dinner. 20181228_185703The next day Nathan and the boys did their fishing trip so he baked up the fish they caught. Gage can eat tilapia and bluegill all day. Salmon and tuna are anaphylactic. So the thought of him trying this trout had me a mess, on the inside. I really didn’t want him to eat any. How would I tell him though that he couldn’t eat what he had spent half the day catching? 20181229_104913_resizedLuckily, he had a backpack of formula and really didn’t want any fish anyways. I’m not sure if he was too nervous to try it, but I left it alone. The only people that could eat it were my parents and Charlie. They LOVED it along with Nathan’s homemade hushpuppies. Nathan and I had burgers. 20181229_192458.jpgWhile staying at the condo we ate lunch in. Safer and easier all around.

20181230_204731The following evening we decided to try some local Mexican.  We checked out Senor Donkey. Mexican makes me nervous for many reasons. When our waitress brought chips and salsa and we asked if they made them there or if they were store bought and she had no clue what we were saying I was super nervous. This place was authentic. So we didn’t let Tinleigh have any chips. Another waitress came to take drink orders and she spoke some choppy English. We got our orders in and I felt okay with Gage getting the pork tacos. I had an amazing watermelon margarita. 20181230_192601A few bites in though and Gage was complaining about itchy ears again. We weren’t sure if it was his nerves or if it was real. So I passed him an apple from my purse along with a Benadryl and we took his tacos back to the condo for lunch the next day. Tinleigh had, had enough by this point. She couldn’t eat anything there, she was tired and was getting all worked up. We ended the dinner with her in tears because eating sucks. Gage was fine after his Bendaryl, but I had to feed him once we got back to the condo.

20181231_155050.jpgOur last night on the island was new years eve. Also, our 14th anniversary. My parents happily offered to watch the kids. We took them up and headed out for the evening early. Our plan was to just check out the different bars and restaurants having drinks and appetizers as we go so we would know where to go next time we visit South Padre Island. We started out at Pier 19. It was a little restaurant on the water. I got to see a dolphin playing in the water while we ate.  Next stop was the Wanna Wanna beach bar. Being that it was cold and somewhat rainy they had a cover around everything. So it wasn’t too exciting. I’m sure when it’s warmer out it’s a fun place. There was a sign that said “Please no dancing on tables with heals”. We then headed to a restaurant where Nathan decided he wanted a steak dinner. So Liam’s Steakhouse and Oyster Bar was our last stop of the night. 20181231_185216.jpg

We both had some steak, amazing cocktails and took some chocolate mouse cake back to my parents as babysitting payment. We picked them all up some pizza hut as well. Yeah, wild New Years Eve done by 7:30. We spent the rest of the evening playing Uno with the kids. Then we saw some fireworks from our room. No one had an allergy attack. I would say that’s a good note to end the year on.

January 12, 2019 Posted by | daily life, LIVING | , , , , , , , , , | Leave a comment

Food Challenge and Skin Prick Testing

Having passed their Thanksgiving scopes we needed to march forward. That meant Tinleigh wanted to do an apple food challenge and we needed to figure out what is making Gage so snotty.

Off to the allergist office we went. 20181126_085637.jpg

Tinleigh tested positive to apple at her very first allergy skin prick test as a baby. As soon as we removed apple baby food from her diet her gunky throat disappeared. We have never tried it since then. Tinleigh decided it was time. After letting Gage try potato at home and almost needing an epi pen I said we were done trying Ige allergic foods at home and we would do apple at the allergist office.

I had a discussion with Gage about finding out where his peanut allergy is. We thought maybe since he’s older he would grow out of it a little bit. That was our hope anyway. We also wanted to see if maybe he had started to become allergic to something he was eating a lot of like wheat or dairy. Lastly, he wanted to see where his chicken allergy is in hopes of getting to trial chicken.

Luckily, I got them both in at the same time. We started with Gage first. It was decided we would check his environmental allergies as well. We hadn’t done a full panel of environmental in years. I didn’t like doing that to them and if they’re stuffy they get allergy pills. It doesn’t really matter if we knew what it was. So that would be 60 skin pricks right out the gate. I then checked off all the foods we needed to check and that added another 40.  It was decided at the last minute to add hamster since we now have 4. so Gage got 101 skin pricks on his back. I love him. He is honestly the best patient I have. He always does as he’s asked, never flinches and has never fought. He held tough through all the skin pricks. I don’t think I could hold it together as well as he did.
20181126_092408.jpgSee that great big white spot? That’s peanut, he hasn’t outgrown it. So after Gage went through this we headed to the lab for a blood draw. The funny thing was beans, pea, salmon and potato all came back negative. We needed to check his blood levels on these along with the foods that came back positive.

20181126_101707.jpgWhile Gage’s back was welting up we started Tinleigh’s apple challenge. She was so excited, and I think a little nervous. But oh did she enjoy it. I think she grinned the whole 2 hours we were there. It went amazingly well. Tinleigh slowly ate an entire apple for the first time in 6 years. That’s huge for her diet. Apple is in so much stuff, you have no idea until you have to watch for it. Fruit strips were the first thing she wanted. We went right to the health food store and bought everything she had always wanted. Our rule for now is apple 4 days a week at a minimum. We haven’t had any issue meeting that requirement. We just have to keep it limited to one serving a day. I also requested Tinleigh have a blood draw for alpha gal. Since she started her airborne reactions to dairy and beef with no answer I wanted it ruled out. We also went ahead and drew for all environmental allergens on her as well since she had never been tested on any of them.

Gage’s results are that he’s allergic to just about everything outside except 5 molds, horses, dogs, mice and hampsters. For his foods he’s extremely highly allergic to potato and peanut. Followed by pea, egg and soy. Brazil nut, Almond, Tuna, beans and sunflower seeds are low. Luckily he was negative to chicken. However, salmon was negative on both tests and we just epi penned him on that a year or 2 ago. So we’ll attempt an in office food challenge on the chicken and move on to trial it for EoE if he passes at the allergist office.

Tinleigh’s results. Tinleigh’s Alpha Gal test was negative. Her beef and pork are positive though. Her blood work shows she is allergic to some molds, trees, grasses, weeds and cats. So basically everything. I’m relieved about the Alpha Gal test. After speaking with her GI doctor we have decided to reduce her steroids and see if she can continue eating all fruits and vegetables. We need her anger issues back under control. So instead of moving forward with a few more foods we’ll adjust the meds. She does get to keep apple.  In reality she only has a few more things she can add to her diet anyways. So game plan is to reduce steroids, scope in 3 months. We’ll see what happens!

December 12, 2018 Posted by | Gage's allergies, LIVING, Tinleigh's allergies | , , , , , , | Leave a comment

The Results During Thanksgiving Dinner

We had Thanksgiving dinner this year. Something we haven’t done in I don’t know how many years. I was nervous, but excited. We made sure there were safe foods for the kids to have so they felt fully included. We also took steps to make sure they didn’t have anything that would cause them to have an allergic reaction. So much food, so much anxiety.

The girls learned how to set the table. They thought that was awesome. 20181122_092635.jpgFamily all arrived and dinner began. I made plates for all of my kids. It was really a big deal for all of them. Charlie had never had stuffing before. He loved it. This was also the first time he had turkey in probably 8 years. Mom made a ham so that Gage was able to have ham instead of turkey. He also got to have stuffing. Not his favorite. This was Layton’s first Thanksgiving ever at age 4-1/2. She of course wouldn’t eat hardly anything.

20181208_161955.jpgAs I made Tinleigh’s plate my emotions got the best of me. She had green beans, corn and a baked potato. We also scoped a little homemade strawberry jelly into a tiny cup for her. I began crying as I scoped it all onto her plate. I was so happy for her. Excited she had this many foods in her diet. I was also so sad that this is her life. Will she have more Thanksgivings like this in her future or is this her first and last? Things that race through your mind that you know you can’t dwell on. I wiped my tears and set her plate in front of her. She grinned ear to ear. She was so excited to just sit with everyone and have a big plate of food.

Just as I was starting to make my plate my phone rang. It was Cincinnati. So of course I answered. It was a doctor calling to tell me that both Gage and Tinleigh had passed their scopes. Well that really got me going. I was shocked and asked him to repeat the results. He confirmed he had said they both passed. I was over the moon happy for them. I got to announce to the table that they both had passed. That meant that Gage’s gunk and snot is not from EoE and he can continue eating with his steroids. Tinleigh passed eating all fruits and vegetables and the steroids are working for her!

It was really the best Thanksgiving ever!

 

December 11, 2018 Posted by | Charlie's allergies, daily life, Gage's allergies, LIVING, Tinleigh's allergies | , , , , , , , | 1 Comment

A Twisted View

20181206_171112.jpgHow does having children with allergies and EoE effect their siblings? To be honest I didn’t really think about it. I assumed things were running along just fine. Layton doesn’t seem to have any anaphylactic allergens. She does have some strange things she’s allergic to. Starburst and anything ranch send her into a coughing asthmatic fit. Tomatoes and oranges break her face out, make her throat and mouth itchy and her tongue gets bumps. She’s never had any nuts or shellfish. Scrambled eggs make her vomit. She has only tested positive to cherries so we stay clear of those. Occasionally, Layton will eat a little bit of something then complain of belly pains or refuse to eat the rest of it along with future servings as well.

Layton is aware of her allergens and never tries to eat them. She even reminds us sometimes if we accidentally try to give her something she shouldn’t have.

Something I have noticed recently is Layton will say I don’t want to trial that.  I know she has picked that up from my conversations with Gage and Tinleigh. I don’t think she really knows what it means. I have never explained EoE to her.

The thing that caught me off guard and prompted this post was a conversation between me and the preschool head. After school on Tuesday I was talking to the head about their Thanksgiving lunch that week. We discussed me putting safe dessert in a baggie with her name on it. Then I proceeded to ask what they would be serving. As she was listing everything I was nodding in agreeance that everything would be fine. Then Layton spoke up. She said “No, I don’t want to trial anything new let’s just pack my lunch”. She was nervous to eat what they were providing. Oh my gosh! What have I done?! While keeping her safe from the few things that cause her little reactions I haven’t explained anything. When Gage was this age we were explaining to him he wouldn’t be able to eat anymore food and he needed a feeding tube. I now have a paranoid preschooler that’s afraid to enjoy food the way “normal” kids can. I packed her lunch for their Thanksgiving feast so she would feel safe, but we have a lot of talking that needs to be done.

After taking Layton along to the allergist and watching Gage have skin prick testing and Tinleigh do a food challenge to an apple I think I may have scared her for good. I had the girls leave the room when they did Gages skin pricks but she came back in to watch them develop. So her new fears are skin prick testing and she keeps asking when she’ll go trial food at the doctors office. 

Does your non-allergic kid have fears about allergies?

Do they understand what life is like for your allergic child?

How much do you explain at age 4?

Layton’s little list is legitimate, but really nothing compared to her siblings. I need her to understand more about what is going on in our family without scaring her too much.

December 8, 2018 Posted by | daily life, Layton's food exploration, LIVING | , , , , , , , | 3 Comments

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.

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

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

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

Why Not?

So if I’m getting back into blogging why not just turn this into our allergy reaction diary instead of a blog? Is there a difference?

I need notes. The daily what happened to whom. I really need someone just following me around all day with a pad and paper writing things down for me.

Today was great. Aside from Layton’s typical not wanting to eat anything. Which has been worse for the last week, but I am blaming her cold right now.

This evening Gage started in with his typical “I’m hungry”. He says this even while hooked up to his feeding tube. He misses eating more than I could ever imagine, even though his tummy is full. I ask him what he wants and his response “something crunchy but chewy, something like French fries”. This kills me to the core. Not only do I not have a solution for his want, I painfully know that he will never have French fries. The last time Gage ate potato he vomited everywhere, he was one. He only knows what a French fry looks like. He has no ide what it tastes like. He’s anaphylactic to potato, he’ll never taste one.

You see, now, when Gage asks me for something to eat he’s very descriptive. He knows what texture he wants, he knows if he wants sweet or salty. He wants to eat real food. It makes me so sad that it’s also started making me angry. There is nothing I can do for him. Nothing.

I think though, Gage still has hope. That’s the one thing I feel is slipping from me. Even though Gage is so frustrated and hates his disease, he still see’s the future and him not having a feeding tube. He can see himself eating food. We’ve been in this for 7 years and we’re not where I had envisioned us being. I guess that’s why my hope is falling.

It’s all the little events too that are killing my spirit. Like tonight. Once Gage settled on some raw cauliflower with salt I thought all would be well. I knew it wasn’t what he really wanted, but he crunched away. Then after he had crunched through one big tree he says mom my eye is itchy. I told him he was getting in the shower next and he would be okay. However, he comes over to me and says and there’s a bump on my lip. Sure enough he had a little blister right there on his lip as his eye was becoming more and more red. He went into the bathroom to hop in the shower. When I took him in a towel I noticed he also had a big hive on his back. That’s when the partial panic sets in. Is this going to be a full blown anaphylactic reaction? So we gave him a Benadryl and I told him if he starts feeling anything in his throat or with his breathing to get out of the shower and come get me. Luckily, his reaction didn’t get out of control. His throat did hurt a bit but the Benadryl kicked in and he was fine.

So now we have the issue of what the heck happened? Was it just the salt? Has he become allergic to cauliflower? I’ll have a talk with him about it and see what his judgement is on it. I’ll let him make the decision on if he tries it again or not.

Be strong and courageous.

Do not be afraid;

do not be discouraged,

for the

Lord your God

will be with you wherever you go.

Joshua 1:9

 

February 6, 2017 Posted by | Gage's allergies, LIVING | , , , | Leave a comment

Scopes x4

We scheduled all four kids to be scoped on the same day. Our crew filled the 4 spots the hospital would do that day.

The night before we made the 3 hour drive to the hotel. We set up a formula bar.camera 081Fed everyone a snack and attempted to settle in for the night. IMG_0724Layton luckily went right to sleep in her pack’n’play. Tinleigh slept with mom and I. Nathan and the boys took the pull out couch. I think Nathan got the short end of the stick as I noticed Gage basically slept on top of him all night.

We had to get up bright and early. I tried to keep track of the times things happened and do a blog post that way, it ended up too crazy for me to keep going back to log things in.

Here’s as far as I got

4:30am up and at em
4:37 i put my makeup on by the light of the microwavecamera 090
4:45 mom broke her diamond necklace in the dark hotel room and the diamond flew off
5:00 woke up kids
5:15 found missing diamond
5:30 headed to hospital
5:50 checked in all 4 kidscamera 099
6:20 got called back to our roomphoto 2
7:15 Layton got loopy medscamera 098
7:35 Layton went back
8:05 Tinleigh got loopy meds
8:10 Laytons done
Tinleigh went back
Gage got meds
9:07 Gage went back

After this I wasn’t able to keep a log. Once Gage went back Layton came out. Mom and I headed down to be with her and could hear her yelling as we rounded the corner. I knew I had another little Tinleigh on my hands. We walked into her curtain area where one of the nurses was trying to hold her as she screamed and tried to wiggle away. She was fired up. I noticed something in her mouth. I quickly asked what it was. The nurse said a goldfish cracker. WHAT?! I said don’t those have dairy in them? I don’t usually buy them because my other kids are allergic to them. The nurse looked at me and said no it’s just wheat. We scooped the cracker out of her mouth anyways, they handed her to me and then they all left. I grabbed the bag of crackers and sure enough there’s milk in the crackers. I looked down at Layton and right there around her ankle is her little allergy bracelet with one work on it: MILK. I was pissed and nervous all at the same time. I was trying to calm her down, watch for any signs of a reaction and trying to figure out in my head how to handle this situation with the nurses. Her regular nurse came in and I told her in a calm manner the crackers do have milk in them. I then told her if this would have been Tinleigh she would be having an anaphylactic reaction. The nurse went and said something to the pacu nurses about their mistake. I left it at that. Luckily Layton was fine. I called the patient advocate line the next day and took care of the situation. photo 5I then asked the nurse for a glucose bottle for Layton in hopes it would calm her. That’s what always worked for Tinleigh. Sure enough it worked for Layton as well. Layton didn’t like the heart monitors, her IV or the blood pressure cuff. She just wanted it all off. So we keep giving her little bottles of water and turned on the tv. I was able to keep her a little more calm until it was time to unhook her from everything. Once she was finally calm Tinleigh came rolling into our recovery bay. photo 4Tinleigh has a history of waking up crazy mad. The doctor now gives her a little something to calm her down. It works like a charm. She woke up happy and mellow this time. She saw Layton’s little bottle and instantly wanted one too. She may be 3-1/2 but if it keeps her happy then so be it. We entertained the girls for a while and then Gage came out. photo 3We propped him up in a chair and he was quiet and content. Didn’t want bothered only wanted some sprite. Layton was starting to want to run around by this point. So we found a wagon and took the girls for rides up and down the hall. It was still early in the morning and we were the only ones in the whole recovery area. photo 1(1)Finally Charlie came out. We propped him up in a chair as well.camera 171They boys sat drinking sprite and watching tv.  No one got sick. No one threw a fit, except Layton. It was a good day for scopes. The doctor came and spoke to us once everyone was done. Everything appeared good in each of them. Tinleigh had one little spot that looked like small ulcer so they biopsied it. Other than that all the inflammation was down. We know not to get our hopes up because that doesn’t always mean they’re eosinophil clear but it is a good sign that things could be better. We left the hospital by 12:30. We were all exhausted but it was over, we did it.

Friday afternoon I got a call from the doctor. Results were in. I felt numb. She asked who I wanted first. Layton of course! Guess what Layton scoped clear! She may also start on dairy. I couldn’t believe my ears. I think I’m still in shock. Does this mean she’s cleared for life? No, not really. She is on all food at this point in time and is scoping clear. It could flare in the future. We’ll pray that she doesn’t. Charlie was 4 before he started having issues and he was on a regular diet until that point. Let’s think positive though. IMG_0737Next up were Charlie’s results. He was clear all the way through. There were no more eosinophils in his belly either. We had removed soy and started him on reflux medication. The eosionphils in his lower esophagus were gone also. So we will keep him on the meds and off of soy going forward. Even though he doesn’t show any allergic reactions to soy his skin and blood test for soy are huge. So in this case allergy testing does work for him trying to figure out EoE. Charlie is going to trial beef next. He hasn’t had beef since he was 4 and that was the food that set everything into action for him as far as allergies and EoE go. He can only eat pork and fish right now and really needs another protein. Chicken is a trigger and he keeps testing positive to shellfish so beef it is. Fingers crossed he doesn’t have an allergic reaction. camera 039

Gage’s scope was better. All of his inflammation and furrowing were gone. So the removal of corn helped clear things up. However, he was still showing 10/12 eosinophils in some areas. Gage has always had a lower number of eosiophils since having a feeding tube. The highest it’s ever been though is a 9. We don’t want to see these numbers in a steady climb. Cauliflower was the only thing he was trialing. I mentioned to our doctor he has been complaining of his throat burning. So we are going to let Gage keep cauliflower and start him on reflux meds. We are hoping maybe he has some reflux going on and this is why he’s showing low numbers of eosinophils. We will let him take the meds for 2 weeks before letting him start a new trial. His new trial will be broccoli and watermelon. We will scope him at the end of July. photo 1

Tinleigh failed her food trial this time around. Although she didn’t have any visual signs of EoE her numbers were 10/20. So we have to remove bananas and squash from her diet. The doctor is letting Tinleigh keep Enjoy Life Chocolate chips because they are just cocoa. We are going to pull these 2 foods from her diet for two weeks then she will trial oranges and sweet potatoes. Tinleigh will get scoped at the same time as Gage.

For both Tinleigh and Gage if they have high numbers at their next scope we will have to dial things back and get them to a clear scope before we can continue to move forwards. So i’m really praying things straighten out for them these next two months.

We’re very happy with how things are going for the kids.  A little sad Tinleigh has to take away bananas and squash but she still gets to move forward. It’s all just part of how crazy this disease is.

May 30, 2015 Posted by | LIVING | , , , , , , , , , , , , , , , | 1 Comment

6 Weeks

The last few days have been ok. Gage has asked for popcorn, chips and a few other corn items. I remind him that he can’t have corn anymore. He says okay can I have… and asks for something else. He doesn’t complain. It’s just matter of fact and that’s it. He has asked why corn messed him up and we talk about it. He hasn’t complained or thrown any fits. Tinleigh has also asked for food. We offer her blueberries, olives, Popsicles, candy or to make her snow. Of course she’s sick of all of those things and says no. So we try and distract her by suggesting she play something. It’s going to be a very long 6 weeks.

We’re on day 3.

I feel horribly for them.

I can’t imagine being in their shoes. wpid-20150118_103535.jpg

So, that’s just what I’m going to do, walk in their shoes.

I am going to limit my diet down to just a few foods for the next 6 weeks.

NO cheat days.

NO “just one nibble won’t hurt.”

So here’s my list of foods I CAN eat:

chicken

spinach

yogurt

banana

blueberries

oatmeal

raisins

eggs

green beans

cucumber

peppers

flour tortilla

Cliff bars

Starting tomorrow I will only eat these foods for the next 6 weeks.

I’m hoping to get insight on how my kids might feel mentally about food. How it affects them socially. Just get an overall sense of how it is for them.

Anyone want to join me?

Follow along to see how I’m doing.

Sponsor my 6 weeks by donating to CURED and help my kids get the cure they need.

Help cure them so they can eat more than just a few foods.

Make sure and write in Honor of the Root family when you make your donation. karas camera 1314

January 18, 2015 Posted by | daily life | , , , , , | Leave a comment

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