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!

Advertisements

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.

20181119_120135.jpg

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.

20181119_135945.jpg

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.

20181119_151232.jpg

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.

IMG_20181120_132936.jpg

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

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.

20180315_112053.jpg

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.
20180315_161204.jpg

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

20180315_181640.jpg

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.

20180316_091234.jpg
20180316_104448.jpg

20180316_174952.jpg

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.

20180320_213223.jpg

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?

20180318_144447.jpg

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.

20180320_174306.jpg

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.

3.jpg

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.

2.jpg

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.

20180319_150028.jpg
We also had a blast on the pirate ship. No food involved and the kids got to squirt all the adults with squirt guns.
20180318_124156.jpg
They learned the basics of shuffle board
20180319_160331.jpg
We even had a few serious rounds of Florida-opoly
20180320_162100.jpg
We swam and played together
5.jpg
7.jpg
20180321_152409.jpg

We all just breathed a little easier.

20180317_195650.jpg

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

Blogs

I’ve come across a blog that lists tons of allergy type blogs! There’s just a straight up list of them. You can click on any to find some helpful mom tips when dealing with allergies, asthma, eczema and EoE.

Check it out! But always come back!

http://itchylittleworld.wordpress.com/

January 28, 2012 Posted by | LIVING | , , , , | 1 Comment

   

%d bloggers like this: