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

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

6 Years In

bottle.jpgTinleigh was diagnosed with eosinophilic esophagitis at age 14 months. She turned 7 this month. I just bought her a new package of bottles to drink her formula from. It hurts my heart. Why have we been in this battle for 6 years? It doesn’t get easier, it just becomes our daily life. It still kills me when she asks for something she can’t have. We still get excited when we find something new she can eat. The highs and lows are so hard on our emotions.

She stared 1st grade this year. It has been absolutely amazing. Tinleigh is surrounded by a group of people that would give her the world to keep her protected. We started allowing her to sit in the cafeteria. The first week I went during lunch and sat with her. It was like watching a bomb to see if it’s going to explode. I think we finally have her airborne reactions under control with medicine. She absolutely loves being in the lunch room. She is isolated at the peanut free table located closest to the exit doors. However, she gets to sit with her best friend who isn’t in her classroom this year. The two of them giggle and chat through the whole lunch period. It’s adorable. You can see the happiness in Tinleigh’s eyes. She’s enjoying life.

Once lunch is over we have the problem of getting 97 sets of hands clean. You can’t exactly expect that many 7 year old’s to wash their hands in 3 minutes and do it with out screwing around and being on time to their next class. Last year the lunch crew would put a package of the brown napkins in water and pass them out as the kids exited. The kids would wipe their hands and move on to their classes. This year Tinleigh’s class and one other have gym following lunch everyday. The chances of food getting to Tinleigh during gym are greater since the kids had just been eating. The school asked for donations of wipes to clean the kids hands. They needed an estimated 17,000 wipes to get through the school year. A note was sent through the community and do you know what? The school had almost 54,000 wipes donated to them. Can you believe that?! A simple note was sent out on social media saying they had a 1st grader with allergies and they needed wipes to help keep her safe. The generosity of different groups and individuals in our area was amazing. Of course we had a few people online that said “she shouldn’t be in school” “wipes aren’t effective” “The mom needs to speak with her allergist” “they should just make the kids wash their hands”. I bit my tongue and kept Tinleigh anonymous, that was tough. 20180914_121050.jpgThe local air med team was going to fly in and deliver some wipes but got called out at the last minute. The fire department made their delivery that same day. It was awesome and very emotional for me which I hid because who cries over donated wipes? This mom!  I did have the school share a thank you letter with all that contributed.

To the thoughtful who donated,

I don’t think there are enough words to express my full gratitude. I am blown away at the help we have received in gathering wipes for the 1st graders to keep my daughter safe.
First, I want to let you know that it was a huge decision for us to even send her to school. We debated keeping her home, but after a lot of praying and weighing the pros and cons we decided to send her. What it came down to was that we can’t keep her in a bubble forever. She must learn how to navigate life herself and be her own advocate. Let me tell you, if you ever met her you would see she is doing an amazing job. She’s not my first allergic child that I’ve sent to school, but she is my most severe. Sending her to school every day is scary, but we know we’ve made the right decision. She thrives at school, it’s where she’s meant to be. The support we have had from the staff at xxxxxx Elementary has been outstanding. I know they truly care for her and her well-being. Their effort to collect wipes tops the cake.
The effort from everyone involved really shows how great a community we live in and reinforces my belief there are good people out there. Seeing a community come together to help a stranger just warms my heart. I will be forever grateful for your donation. When I explained to her what everyone is doing for her she grinned and was so happy that others care for her.
Thank you from the bottom of our hearts for helping keep our daughter safe.
The allergy family at xxxxxx.

20180914_122328.jpg It’s just heart warming to see a community pull together to help. Restores your faith.

20180926_184503.jpgTinleigh has been on steroids since her 90 day elemental diet over the summer. She was scoped at the beginning of August and we made the diet change. Unfortunately, being elemental for 90 days did not clear her of the disease. She still had eosinophils in her esophagus. She is truly in that rare group of kids with this disease. The doctor wanted to move forward and we are hoping to see that steroids will allow her to eat. She is currently eating all fruits and vegetables. We sort of took the let’s go all in and see if steroids even work approach. She also gets to have coconut and cocoa. She’s doing amazingly well. We can actually all have tacos together! They’re all made up of different stuff but it’s one meal we can all do. The only fruit she can’t have are apples because she’s allergic. She finally threw in the towel on beans, they just made her itchy and she felt she’s allergic to them even though she loves them. I’m not going to argue with her.
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20181006_100828.jpgFor Tinleigh’s birthday I made her a mug cake. I did my best to ice it and present it as a “normal” cake. She loved it. We let Tinleigh have her first friend birthday party this year. I was quite nervous knowing we couldn’t do a cake. What would her little friends think? My mom and I came up with a cake made of fruit for them to all have. I also melted enjoy life chocolate chips and drizzled it over strawberries. They thought it was wonderful! They all kept asking for more fruit. Tinleigh thought it was the best birthday ever! Win for mom!

We are coming up on our next trip to Cinci and Tinleigh is incredibly anxious about it. She still fears getting scoped. Her new GI watches as the anesthesiologist and nurse try to calm her and get her knocked out. I am also allowed to be with her until she is asleep now. The GI doctor doesn’t want to scope Tinleigh anymore than we need to. So we’re really hoping these steroids work and we can keep her eating and not have to scope as much these next few years. We’ll let her get a little older and then move forward again. I love that he cares for her well being that much.
20180803_204229.jpgTinleigh still does not let her disease slow her down or get her down. She has her sad moments, but this little girl brightens everyone’s day and makes the most of it. She is definitely LIVING the allergy life.

October 21, 2018 Posted by | LIVING | 7 Comments

The Week Before.

 

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This was how the day went.

The countdown was on until we went to Cincinnati for the kids first visit to the EoE clinic. I’m actually going to back up to a week and a half prior. Tinleigh had a field trip on Wednesday and Layton and I both woke up with a sore throat. I thought it was seasonal allergies kicking in. So off we went for the day with all the kindergarteners. I was only there to make sure Tinleigh stayed safe and hooked her up for her tube feeds. The trip was successful, however Layton and I still had sore throats at the end of the day.

 

Thursday I woke up, still with a sore throat, but now also with a stiff neck. Wings of Hope called me that day to check in and see how everyone was. I told them Gage, Layton and I all seemed to have a cold. They informed me that it would be a bad idea for them to privately fly us because in an unpressurized cabin with congestion we would be in a world of hurt. Luckily, they still came through for us and flew us commercially.

Friday I was the same. Layton seemed to be fine and didn’t complain anymore, still stuffy though. That day Gage had his pre-op physical. About 30 minutes before I needed to go get him from school the nurse called and said he had a sore throat and small fever.  UGH! I was then guessing we both had strep. So I was planning on going into the walk in clinic once Gage was done with his appt. We were both swabbed and we were both negative. We just had some nasty sore throat virus that was going around.

Did you know: if you eat Doritoes you must wait at least an hour before having a rapid strep test done because there’s something in Doritoes that throw the results off. Yes, Gage was eating Doritoes right as the nurse went to swab him, so we had to wait. lol

Saturday I woke up with a common stiff neck and shoulder pain I often get on my right side. This time it was on the left. I took my prescription meds that night thinking it would be gone by morning as usual. Boy was I wrong. I was worse, much worse. I stretched all day and repeated my meds at bedtime. Sunday morning I was in pain. So as Nathan packed up to head to Florida for the week I packed up the kids and we headed to the walk in clinic. A steroid shot and prescription later we headed home.

Monday afternoon I called the doctor asking for a different muscle relaxer than what I had. I needed something that I could take during the day and be able to function because what I had knocks me out.

Wednesday morning I managed to roll out of bed and took all the kids to school. I was in tears from pain. Thank goodness my crew helped me out getting things ready that morning. My shoulder was completely locked up along with my neck. Three of my fingers were numb and I had shooting pains in my armpit and down my arm. Once I had everyone at school I went back to the walk in clinic begging for relief. Luckily it saw the same doctor I had seen on Sunday. He suggested I see his chiropractor and gave me steroids and pain meds.

Wednesday, Thursday and Friday I went to the chiropractor, never again.

Nathan got home Friday night. I put the kids to bed, took a pain pill and managed to pack and get everything ready to go. Saturday morning we had 2 baseball games and then Gage, Layton and I headed to Ohio that afternoon.20180421_160116.jpg

To be continued…..

 

 

May 8, 2018 Posted by | daily life, LIVING | , , , , , | 2 Comments

Seeing Straight

20180121_120706.pngI was very nervous when I first noticed Tinleigh’s eyes turning outwards. I still don’t 100% understand why, but I’m leaning towards connective tissue disorder to blame. We won’t know for sure until we do genetics testing in August.

20180328_171447.jpgWhen I found an eye doctor that looked past her vision being 20/20 and told me we could try to fix her eyes I felt some relief. They tested Tinleigh’s eyes and came up with her exact diagnosis, intermittent exotropia and oculomotor dysfunction in saccades, and what needed to be done. Although her eyes are 20/20, they can’t work together to focus. Think of holding a book in front of your face, both eyes focus on it. Tineigh’s eyes will focus, then one eye drifts and Tinleigh needs to move the book closer or further away so the eyes will refocus. When you watch her read she constantly is moving the book in and out to keep refocusing.

20180328_172548.jpgI was curious what vision therapy was. Once I saw her do it for the first time it totally made sense. It’s literally a work out for your eyes. If you’ve ever been to physical therapy, you know you work a specific muscle group to fix whatever your problem is. That’s exactly what vision therapy is. We are working Tinleigh’s eye muscles to make them stronger so they can work together as they should. Tinleigh only actually attends therapy once every two weeks. We are then sent home with her own folder and list of exercises. We must do these exercises 5 days a week. They’re short, sort of fun and super easy. The first few times she did get a headache but those have stopped.

Will it work? We hope so. We were told that she may do great and be done in a few months. It just depends on how her eyes react to treatment. It does happen that as they grown, she could have a growth spurt and may have problems again. We would just repeat therapy. Worst case scenario if her eyes continue to stray outward and she has troubles with reading and school work then we would be facing eye surgery. I don’t think it will come to that though.

 

April 1, 2018 Posted by | daily life, LIVING, Tinleigh's allergies | , , , , , , , | 1 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

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