LIVING

With EoE, Allergies, Asthma and a G-Tube

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!

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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

Scope Number 3 in Ohio

Off we went. Six humans, one bearded dragon, 3 dwarf hamsters, plus one more on antibiotics. We made the days long journey to Ohio, dumped our stuff at my parents house then Nathan, Gage, Tinleigh and I headed back out the next day to Cincinnati for their scopes.

Gage was going to be scoped to check and make sure his steroids were still working. He had been a snotty gunky mess since summer. We weren’t sure if it was Ige allergies or his EoE flaring. Tinleigh was being scoped because she had started steroids 3 months prior along with all fruits and vegetables she isn’t allergic to.

As we packed up and left Tinleigh was crying as she had been for 2 weeks prior when she learned scope time was coming. We assured her everything would be okay and distracted her with different thoughts.

My kids have stayed at hotels so many times, but it never gets old. They love it. Which in my book is a plus. It makes them happy and they feel fancy. I want these rock stars to always feel that way.

We arrive at the hospital the next morning and begin the normal check in procedures. Tinleigh is just fine. She had cried before bedtime so I was happy to see her smiling. We moved into our room and went through the million question interview as we always do. Gage and Tinleigh were happily distracted on their tablets.

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Gage gowned up, climbed on the bed and received his loopy meds. He giggled and laughed as the effects set in. I walked with him into the OR. Kissed his head and held his hand as they put the IV in and drew blood. Then he was off to sleep. I made my way back to our room and opened the door to find Tinleigh sitting on Nathan’s lap crying. Not hysterical, but weeping and very upset her time was about to come. I got her onto the bed and convinced her to change her shirt into the gown. The anesthesiologist came in with a syringe and extension so we could administer a new cocktail of drugs in her tube. At first she covered her button and refused. We gently told her things would be okay and she let the doctor push the drugs into her button. She cried as the medicine began working. I hugged her and held her tight kissing her and whispering that everything would be okay. The doctor came in with Gage’s update and I knew it was go time. I released Tinleigh to find she had fallen to sleep. The nurse started to move the bed and Tinleigh didn’t flinch. We wheeled her down the hall and for the first time ever Tinleigh slept during this process. I felt relief coming over me seeing this new drug cocktail was working. They pushed her into the OR, placed the laughing gas mask on her face and began prepping her arm for her IV. Her little eyed popped open. My heart sank. She began trying to yell at the doctor. Her words were muffled by the mask. Tears fell from her eyes as I got right down in her face so she could see me. I repeatedly told her she was okay. She was frozen, couldn’t move, but was definitely trying to communicate with us. It seemed like forever but was probably 1 minute before the doctor drew blood then administered the anesthesia. I kissed her on the forehead and left the room.

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When I met her in recovery she opened her eyes and said what happened? I asked her what she remembered. She asked if she fell asleep. I told her she fell asleep in the room before we wheeled her back. She didn’t remember at all. I was so happy! Then the anesthesiologist popped in. He asked how she was. I told him fine and that she doesn’t remember a thing. He then informed me that in all his 26 years, adults and kids, he’s never had anyone be able to form words while on that combination of drugs. I said well, now you’ve met Tinleigh.

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Later in the hotel I recorded Tinleigh telling me that her scope was a piece of cake and she liked the new medicine. Also, that next time she won’t be scared. This I will use before her next scope to remind her everything was okay.

So we now have a bit of confirmation that Tinleigh’s body doesn’t metabolize drugs the way it should. What if in the future she ends up at an emergency room with no one to tell the doctor she needs extra drugs or certain ones to knock her out. I need to discuss this further with an anesthesiologist. Just another task on my list of things to do.

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The next day Gage had a 20 min blood work procedure done. We needed to test his cortisol function. This is because he is on such a high dose of steroids to be able to eat plus for his asthma. The steroids can cause the cortisol to stop being produced.

He passed!

December 10, 2018 Posted by | daily life, Gage's allergies, LIVING, Tinleigh's allergies | , , , , , | Leave a comment

Down in the Dumps

20181027_203530.jpg“Why is my life so tough? Am I a bad kid?”

 Wow, that note from Tinleigh blew me away.

Broke my heart.

Scared me.

Made me face a new reality that we must face having a chronic lifelong illness.

It really upset me realizing the older they get it’s probably going to get a lot harder emotionally. I feel like it’s my job to make it all okay.

Tinleigh knows scopes are coming up and she’s anxious. She’s mad. She’s very upset about it. She HATES the IV. She’s a girl that likes to be in control. That comes straight from me. So, I’m certain getting an IV then being put to sleep is so hard for her. She’s not in control of any of it and it’s all happening to her.

Her most recent fit was when she slipped me this piece of paper with her little words. So, we sat on her bed and had a talk. It’s frustrating. We’ve been doing this for SO LONG that you would think something like a scope would be routine for her. Although the timing is routine it’s like a whole new experience to her every time. I reminded her that the last 2 times she told the Doctor that it was a piece of cake when we were all done. She of course argued with me and refused to believe she would say something like that. Then she asked me “Why do we even have to get scoped?”. That stopped me in my tracks. Even though we’ve been doing this since she was a baby she didn’t understand why. She knows the words EoE and anaphylaxis, but the definitions were a muddy mess. Tinleigh didn’t realize they were 2 totally separate issues. I had to re-explain EoE and why we needed scopes. Which of course didn’t make anything better, but now she understands why.

20181128_173519.jpgSince starting Tinleigh on steroids we’ve seen a huge change in her. It’s so ugly. She does just fine at school. She’s her cheery little life is amazing self. At home though, we’re on eggshells to not set her off. Being the strong headed little spirit she is once she goes off the edge it’s a battle. It could be anything from one of the other kids upsetting her to me telling her no. She will argue and fight until she’s blue in the face. She screams and grunts and cries for an hour. It’s not her though, it’s the steroids. She can’t control it. It’s the steroids that wrote that note. What do we do though? She can eat so much right now. She’s so happy about eating. We can’t take it all away.

That note though. As a mom with 3 kids having chronic illness, I wasn’t prepared for that. I thought we were doing pretty good. Having a positive outlook has always been our goal. Maybe it’s going to take more than that. Is there a book for moms on all this? How to handle each phase of life while dealing with chronic illness? I’m not even sure there’s a book with how to deal with phases of life while having “normal” kids.

20181014_215251.jpgGage has been down in the dumps for about a month now. He doesn’t say much, won’t say anything when asked. He just wants to sit in his chair. Nathan, Charlie and I all sense it. He’s quick tempered now. That has never been his personality. We wonder if the high dose of steroids he’s on are affecting him. We know a few friends with EoE that couldn’t do the steroids. They cause them to become angry and turn into little monsters. It’s really a tough call though. We started the steroids so that Gage and Tinleigh could eat. We wanted to make them happy again. However, the steroids could be making them angry. If we take them away, they’ll be back to little to no foods and be very sad again. Do we endure the moodiness and let them eat? Or do we selfishly take away the steroids to see if we get our loving happy kids back? Would they really be happy though?

We meet with our GI this week for scopes. Steroids, anger/depression and options will be our focus topics. I must get things figured out for these two kids. 20181204_193236.jpg

December 9, 2018 Posted by | daily life, Gage's allergies, LIVING, Tinleigh's allergies | , , , , , , , , , | Leave a comment

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

March

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

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

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

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

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

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

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

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

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

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

How CURED helped me

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

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

CURED brought together professionals from all over the globe.

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

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

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

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

Speakers at the conference.

Photo credit :Ting Wen

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

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

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

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

So from the bottom of my heart,

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

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

CURED 2017

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We’re EATING!

It is awesome that Gage and Tinleigh are eating now. As of today Gage has added apple, buckwheat, corn, pickles / cucumber, VeganEgg, squash and oats. Tinleigh is up to banana, corn, squash, potato and pear. Tinleigh tried pickle and coconut but had a reaction to both. When she tried pickle her bottom lip swelled up and with coconut her throat felt funny she told us.

PicsArt_03-13-09.45.23What I completely forgot about was how hard it is to cook for all the people! I try to make fun things for them to eat so they get the full spectrum of foods with what little they have. I’ll tell you what though, it’s tough. Every recipe is 50 different ingredients. The dishes pile high and then it feels like you’re starting all over again.

I have successfully made Gage some buckwheat cornbread. Just to see the smile on his face when he eats it defiantly makes it all worth  the while. He’s also had buckwheat pancakes and buckwheat apple cinnamon muffins. I think he’s in heaven . I tried to make Tinleigh some banana coconut muffins but those bothered her throat. She’s loving corn and we had totally forgotten about corn pasta! Huge hurrah for that. She keeps telling me she is just having the best days of her life because she can eat different foods. Makes my heart smile and break all at the same time.

I’ve found them dried fruits to snack on along with safe fruit leather. Gage can eat crackers and they both have noodles now. It’s all so exciting to them. Potato chips, corn chips and popcorn! Things every kid should be able to enjoy.

20170313_131333On the new news front we had Layton’s allergies tested. She was so cooperative and brave. Poor thing had no idea she was about to be pricked 50 times. She didn’t even cry out. She did hit me twice when it was done though and that’s okay. Lucky for her only 3 things showed up; clam, oyster and flounder. She’s eaten fish sticks and snuck some of Charlie’s shrimp before but never had a reaction. Her testing was so small they said just use caution. Well I don’t think she’s a huge oyster fan so I doubt we’ll have any trouble telling her no. We still plan to scope her in April and see if anything is going on in there.

Tinleigh had a huge reaction to playing with play dough so that’s completely out now. She’s had smaller reactions here and there. Sometimes even played with it and didn’t have a reaction at all. This last one really got her so I told her no more. She wishes play dough was never created.

Tinleigh’s airborne reactions seem to be under control. She did have some freak eye incident a few days ago. Her eyes just swelled up. I have no idea why. We threw her in the shower and gave her some Benadryl and she cleared up. You never know who’s going to react to what here.

What I’m most excited about soon is spring break. We LOVE the beach and the beach loves us. It will be even more awesome that this year we can actually go out to eat. We never do because it’s just too hard to eat in front of them. This year I can pack them food and everyone will get to eat together!

March 13, 2017 Posted by | Gage's allergies, Layton's food exploration, LIVING | , , , , , , , , , , , , | 1 Comment

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

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