LIVING

With EoE, Allergies, Asthma and a G-Tube

Beef Pass

Charlie and I took a trip to the GI doctor for a scope and got to spend about 12 together. We had a good time. He talked my ear off about things like the planets, how to create a magnet that would push away eosinphils so kids with eoe could eat again and how he plans to be in the military one day. It was my birthday so he and I got to actually go out to eat at a restaurant just the 2 of us. It’s amazing to watch someone at a restaurant for what they remember as one of the first times. The menu was super overwhelming for him but he insisted on navigating through it alone. I let him. He finally closed the menu and said I’ll have a pancake. Puzzled, I asked him why just a pancake. He said well I would really like the quarter pound bacon burger. I smiled and told him to go for it. He said but it’s $9. I assured him it would be fine this time. 20151221_185545.jpgHe gave it his all but wasn’t able to finish. My heart was full just watching him eat it.

The next morning we arrived at the hospital bright and early as usual. This day Charlie refused the loopy medicine they give them before hand. He was going to try and stay awake through the whole procedure this time. He makes me laugh. 20151222_090555.jpgNeedless to say he failed his mission of the day.

When the doctor came out to talk about Charlie’s scope he sat down beside me and touched my arm. I instantly had an uneasy feeling. I also wanted to tell him if he had bad news to just give it to me, I can handle it. He told me there was no sign of EoE. Then he showed me Charlie’s esophagus pictures. 20151222_193752.jpgMy heart sank. Something is definitely wrong. What is all of that? The Doctor wasn’t sure. Fast forward to today I got a call from our GI. As the GI who preformed the scope had said there was no sign of EoE and Charlie’s counts were the same as they were back in May, 1-2, meaning beef is a pass. HURRAH! Now, onto that mess. They don’t know what it is. They checked for Barrett’s esophagus. That came back negative. For it to be Barrett’s he would have to have stomach tissue in his esophagus. Charlie just has esophageal tissue. Barrett’s esophagus typically occurs in people in their 50’s and 60’s that have untreated reflux. Charlie is on a high dose of reflux meds and has been for quite some time. The doctor wasn’t sure if they’re watching Barrett’s esophagus develop or what’s going on. They had never actually watched it develop in someone. We don’t want it to be Barrett’s though. Barrett’s can lead to cancer. Our plan is to let Charlie trial another food, either shrimp or eggs. He is currently eating eggs baked in things but not scrambled. He is scheduled for a scope at the end of March. We also upped his reflux meds. Even though he is on a high dose, upping it can’t hurt. Switching to another medication won’t make a difference. If he is developing Barrett’s it can be painful, we want to minimize that.

Could all of that stuff go away by his next scope? Yes. In that case we may never know what it is/was. So now we wait. I am to listen to Charlie for complaints of more chest pain, reflux symptoms, etc. He has no clue any of this is going on inside of him. Since we have no answers we don’t want him to worry or imagine symptoms he doesn’t really have. The doctor told me to put it in the back of my mind and not to worry about it. Yeah, right. We’ll see what’s going on and hopefully have some sort of better answer after his scope in March. If it’s still the same in March with the same biopsy results then we’ll check him every 3-6 months after to keep a close eye on it.

When I told Charlie today that he passed beef Gage was in the room. Gage started crying. He’s having a rough time still wanting all food. I think my plan of teaching them to be happy for one another was a good one, but in our reality can’t really happen. Gage wasn’t mad Charlie passed, he was just hurt it’s not him passing foods.

Say a little prayer for both boys please. 1 016

 

December 28, 2015 Posted by | Charlie's allergies, Gage's allergies | , , , | Leave a comment

Scopes x4

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

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

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

Here’s as far as I got

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

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

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

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

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

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

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

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

Gage Update

Gage was scoped in December the same day as Charlie. We had tried to take Gage off his steroid when we took Charlie off his, but Gage started choking and coughing a lot so he went back on it. Before this scope we had removed wheat and oats from his diet because of his horrible bad scope in July. So we were really hoping there would be improvement.
It took a little longer than usual for the GI doctor to call me after their scopes so I called her. She gave me Charlie’s news with great enthusiasm. Her mood drastically changed when it was time to talk about Gage. Gage’s scope was still very bad and that is why she hadn’t called me. She didn’t know what to do and was trying to figure it out. His mid esophagus had 14 eosinophils and his distal was 54+ and there are fibrosis. Fibrosis is the hardening of the tissue which is what we are trying to avoid and the reason we do special diets trying to find the trigger foods. I got very upset. So it’s more than the wheat and oats that’s causing Gage’s issues. I told her that the only other food he’s eating that was removed before is corn. She reminded me that his patch test came back positive to pork and green beans. So after a long discussion she left it at we remove pork and green beans and keep him on his steroid twice a day. We’ll re-scope him in 3-4 months. At that time if he isn’t better, then we’ll remove corn. So Nathan and I had a talk that evening and we talked about why waiting to take out corn, because that eliminates a lot of everyday things for him. We then decided that we would let him try potatoes. If he did ok on potatoes then we would take out the corn. If he has a clean scope next time we know it’s probably pork, corn or green beans. If it’s a bad scope then we know it’s potatoes.
Gage is currently off the following foods:
Beef
eggs
soy
rice
seafood
peanuts and tree nuts
peas
mustard
celery
sesame
wheat
oats
corn
pork
green beans.
It’s tough. Although having potatoes allows him to have a few flour mixes and cake mixes he couldn’t previously have because of the potato starch. Now if he could just have rice our world would be so much easier.

January 17, 2012 Posted by | Gage's allergies, LIVING | , , , , , , , , , , , , , , , , , , | 2 Comments

Charlie Update

Since I’ve been neglecting the blog for the last 3 months it’s time for an update on everyone.
Charlie was scoped in December. He has been off steroids for around 10 weeks. His scope came back zero eosinophils! This was a huge relief to us to know the steroids weren’t masking the disease. If they had been masking the disease we were going to have to remove the foods he had tested positive to when he had his patch testing. Two of which were wheat and milk. So it was very important for him to have a good scope.
Charlie has been eosinophil free since last December. He went from not eating 20 foods down to 10 this past year. The GI doctor told us at this point we don’t need to scope him unless he starts showing symptoms or we just want to know what’s going on. We are also allowed to add foods back one every two weeks. We are adding them back in order of least allergic to most allergic. We’ve given him deer and he did just fine. Next will be rice, then celery. From there it gets a little tricky because it’s foods that are typically highly allergic foods or foods we’ve seen reactions on.
Here’s his current do not eat list:
Beef
eggs
soy
sesame
peanuts and tree nuts
seafood with the exception of lobster
all melon
peas
pineapple
going to try celery and rice.

January 16, 2012 Posted by | Charlie's allergies, LIVING | , , , , , , , , , , , , , , , , , , | Leave a comment

Polish Kraut and Apples – slow cooker

Made a super easy dinner for Nathan. I love slow cookers!

Polish Kraut and Apples

1 can (14oz sauerkraut)

1 package (16oz) smoked polish sausage, cut into chunks. I used a beef sausage.

3 medium tart apples, peeled and cut into eighths

1/2 cup packed brown sugar

1/2 tsp caraway seeds, optional

1/8 teaspoon pepper

3/4 cup apple juice

I was only making this for Nathan so I cut everything in half.

Place the sauerkraut in an ungreased slow cooker. Top with meat, apples, brown sugar, caraway seeds if desired and pepper. Top with remaining sauerkraut.Then pour the apple juice over all. Cover and cook on low for 4-5 hours or until apples are tender.

Nathan thought it was wonderful. He said I could put it on the menu again.

August 29, 2011 Posted by | LIVING, Nathan's allergies, What's for dinner | , , , , , , , , , , , | Leave a comment

Wednesday Challenge

Wednesday is Fun with family and friends.

My Challenge for you is to eat like us for a day! Here’s your list of do not eat foods: wheat, soy, sesame, rice, oats, mustard, beef, all fish, chicken, celery, corn, peas, green beans, onions, garlic, eggs, potatoes, all nuts, pineapple, all melon. Make sure and read those labels!

May 19, 2010 Posted by | daily life | , , , , , , , , , , , , , , , , , | Leave a comment

Are More Allergies Possible?

Took Charlie to the allergist today to get tested for mustard and eggs. We decided to do the whole food panel and seasonal allergies to get it out-of-the-way. No sense in putting him through more testing down the road. Plus Charlie is drama about somethings so I knew this wasn’t going to be fun.

Nathan holds Charlie on his lap while the nurse starts pricking his back. The first group of 8 he was ok with. The second group he started to cry and by the third he was screaming. We had to grab his hands and Nathan had to hold him tight. Poor Gage didn’t understand what was going on. I look over at him and he’s bawling at the site of his brother in pain. I’m trying not to cry and trying to get ahold of Gage’s hand to help console him. HORRIBLE

Once it was over Nathan takes Charlie to the play room. I have to change Gage’s diaper. He repeats over and over in his toddler language “needle?” 

Once the timer beeps we all head back to the room. The nurse holds Charlie on her lap as she measures and reads off a bunch of numbers to another nurse. The nurse writing says to me “You guessed mustard, right?” Right I answer. She says “mustard is one, and beef….” I just sort of ignore the rest of what she said. I could see he had a lot of hives but really didn’t want to believe them. The Dr comes in, looks over the paper then looks at Charlie’s back. He then starts to read: Soy, all nuts, all seafood, beef, chicken, cantaloupe, pineapple, celery, corn, green beans, onion, pea, garlic, mustard, oat and rice. I was head down, in complete tears and had to leave the room. So I gather myself and step back into the room. Nathan at that point is asking about the research they do in Cincinnati Ohio. The Dr said he is going to refer us there. He doesn’t want to come out and say Charlie has the same disease as Gage, but with Nathan’s food allergy history and the fact that Gage has it… We’ll get Charlie scoped and see what happens.

Charlie also has seasonal allergies to all pollen, outdoor mold, cats and dust.

May 13, 2010 Posted by | Charlie's allergies | , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Our new enemy – CORN

Here’s a list of Gage’s food allergies that was stay clear of: beef, wheat, soy, sesame, celery, mustard, eggs, peas, potatoes, sweet potatoes, all nuts & fish.

Since doing the blood test yesterday to check for more food allergies we are staying clear of corn. CORN is in everything. It was in 75% of the baby food he could eat. While making him Gage safe pancakes this morning I learned corn starch is in baking powder. There goes our egg substitute for baking. Then at lunch I learned corn syrup is in the safe hotdogs he can eat. What else will you pop up in corn. Oh there goes a snack – popcorn!

This will not be a fun week and a half while waiting the results.  

May 4, 2010 Posted by | Gage's allergies | , , , , , , , , , , , , , , , , , | 2 Comments

A little Gage introduction

Gage is my latest creation.  I would best describe him now as shy, strong, loving, mellow and a great dancer.

He started with his food allergy issues before we even realized what was going on. Around 8-9 months when I started some table foods he would choke and puke everyday. I mentioned it to the pediatrician and we wrote it off as a sensitive gag reflux. A few months went by and he was still vomiting. But now it would be 15 – 30 minutes after a meal. He would also become horse. Knowing what I know now, we’re so lucky he never had an anaphylactic episode. My husbands food allergies are so severe that he instantly becomes covered in hives and basically has an anaphylactic episode if he eats the tiniest food allergen. So we didn’t really think of what was happening to Gage as being food allergies. Charlie had a few when he was little but he would get hives. So again I mention it to the pediatrician and he says we’ll watch him and we may have to check a valve or something. Well I was keeping an eye on the foods he was puking up and it seemed to be cheeses and things with egg. So I made the dreaded allergist appointment. This was in the fall of 2009. We didn’t do a full panel on Gage because I thought I could tell what it was and we did a few other highly known allergies. POSITIVE! I didn’t cry because at that point it was only egg, nuts, peas, all fish and wheat. No biggie I can handle that. Actually peas were negative but I had seen him get a few hives while eating them. We did a control test and he broke out in hives eating only 1/3 of a pea. So no peas. His wheat count was low so he was still getting that in small doses.

A few months later he had a horrible reaction at dinner and he didn’t have anything in the meal that had shown a positive reaction so back we went. I insisted it was soy, the allergist questioned it but tested it anyways  – BINGO! What is it they always say? A mom knows hers kids best or something like that. So we added soy to the list.

Another month went by and he started getting hives after more meals. So back to the allergist, this time we did a full panel. I actually laughed when the allergist told me all the positives. I guess that was how I kept myself from crying; egg, peas, soy, wheat, fish, all nuts, beef, all potatoes, rice, celery, mustard and sesame. What is this kid going to eat.

I can honestly say at this point I have no longer enjoyed grocery shopping. Those first few trips I went alone trying to find anything for him to eat. I do need to mention we kept him on rice because it was low and he had never shown a reaction. Still to this day I find myself almost in tears looking at certain kid foods feeling bad that he can’t eat it. I then struggle because his brother can, so do I buy it and sneak it to him? Should he miss out too? It’s these sort of thoughts and things that bother me the most. Gage is actually fine and doesn’t know any different. He’s healthy and huge – always been on the 75% for his growth.

After his last allergist appointment he mentioned EE to me and said let’s get him tested for it, it’s something that can be treated with medicine. Oh well that sounds great! Let’s do it. I hate the thought of him on meds all the time but if it helps him eat let’s check it out!  BUZZ WRONG ANSWER  I went home and did a little google search. Not really what I was expecting. Made the GI appointment and made my list of questions.

At the GI appointment she walked in, we spoke a little, she looked at Gage and said “He really doesn’t look like he has EE. However, he does have a lot of strange food allergies. We can scope him now or we might be scoping him down the road when he comes in with something stuck in his throat.” She was really positive that he didn’t have it. My husband and I decided let’s go ahead and scope him now because we’re going to have to do it at some point anyways. We had Gage scoped the end of January this year. Sure enough his little esophagus was so swollen the Dr was surprised he could even swallow food.

April 26, 2010 Posted by | Gage's allergies | , , , , , , , , , , , , , , , , | Leave a comment

   

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