LIVING

With EoE, Allergies, Asthma and a G-Tube

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

Crying over spilt milk

Food allergies are no joke.

Here’s an example.

Tinleigh is anaphylactic to dairy. You might remember our Halloween episode. I have a tablet with a keyboard I let the kids play on. Yesterday Charlie got a few drops of milk on the keyboard. I thought i had cleaned it off well. This morning Tinleigh had the tablet. She announces to me her tongue is itchy. I was confused for a moment as to why it would be because she hadn’t eaten anything by mouth yet this morning. Then I realized she had touched the computer then put her hand in her mouth. wpid-20150116_101159.jpgHer whole mouth was breaking out. Her dairy allergy is very real.

If your family is allergy free you might not understand how careful allergic people have to really be. If there’s a child in school that’s allergic to nuts and the class is asked to wipe their hands after eating, this is a great example of why. Gage’s nut allergy is so bad if he touches someone that has eaten a nut he would go into asthmatic symptoms and require a breathing treatment.

Please try and understand how scary our big world of food can be to someone that could die from coming in contact with a food normal people would never blink an eye at.

January 16, 2015 Posted by | LIVING, Tinleigh's allergies | , , , , | Leave a comment

On A Dime

I had a great day today. Scrubbed the kitchen. Switched Layton’s wardrobe up a size. Organized the laundry room / mud room. The girls were happy all day, and so was I. Layton discovered her screaming voice. 20141117_154232Tinleigh stayed out of daddy’s camo paint. We picked the boys up from school and everyone was in a good mood. Great day all around. We continue with our typical routine for the evening. Boys get a computer turn. They do homework. They eat dinner. Nathan comes home. Total daddy excitement is in the air. They play, shower and eat some more. Typical.

We’re going to back up though to the part where the kids eat. Tonight Gage asked for salmon which he’s been eating since October 2013. I cooked him up a fillet in his butter and served it to him. I then went about my evening as usual. He didn’t say a word, but once Nathan was home I noticed he didn’t finish it and had left the table. Tinleigh had been begging Nathan to eat.  He agreed to make her some pancakes and Gage chimed in that he wanted some also. Gage was helping Nathan cook and he asked me if I had fairy godparents what would I wish for. I waved my hands over his body and said I would wish that you don’t have allergies anymore. He replied “and no button too?” I said of course no button! I then noticed his upper lip was red. I took a closer look and asked him if it was itchy. Nathan slightly shook his head yes. Right then, my day turned on a dime. I then noticed a spot on Gage’s chest that had a bump and was all red from him scratching it. Gage didn’t want to but said yes he was itchy, then quickly tried to think of something other than the fish that it could have been from. He told me it was from the corn chips that he had last night. I went for the Benadryl but as I did Gage accidentally burnt his knuckle while helping flip the pancake. Off he went to the bathroom to run water on it. Nathan went in to check on him and I could hear Gage was upset. Nathan returned and sent me in. Poor Gage, his little eyes were all red from crying and he told me his eye itched. We went to the couch and I got some medicine for his little burn. While we sat there he said “Mom, I think I’m allergic to fish” then the tears came. OH THIS SUCKS!!!!! So I held him and tried not to get upset too. It’s been a year that he’s eaten fish. Why now? Why do their little bodies play these cruel games? I tried to be reassuring and told him that sometimes you can be allergic to one certain kind of fish but not other kinds. Which is true. So we’ll have to try a different type in a few weeks. We’ll give his body a chance to relax a little. It’s just so frustrating though, sad too. PAUSE………… (coughing in the distance)20141117_200241

I ran upstairs and Gage was continuously clearing his throat and coughing. I asked what was wrong. He said his throat was gunky. I asked if anything else was wrong and if he felt worse. He said yes. That sudden flash of panic rushed over me. Oh shit he’s having a delayed reaction. It’s been a good 2 hours since he ate the salmon. This is after the dose of Benadryl an hour ago. Okay don’t panic mom (in my head) we’ll just give him some more Benadryl. So I give him another half dose. He keeps coughing and clearing his throat so I ask him some more questions without suggesting anything. Don’t ever ask direct questions like does your throat feel like it’s closing. Let them describe it to you in their own words if they’re old enough. It’s still gunky and a little tight because it’s gunky. Nathan and I have a quick huddle and decide to give him an albuterol nebulizer treatment. Yes, of course I’m still panicking. That’s what a mom does. Nathan assured me that if it was really bothering him he wouldn’t be sitting there calmly playing a video game. He says this from his MANY experiences. I agreed. So I sat through the nebulizer treatment watching him like a hawk. Things seemed to be improving. His actual respritory system wasn’t effected or we would have immediately given him the epi pen. We did the nebulizer as caution, preventative. As for now he’s okay. I’m thinking though we won’t be trying any other type of fish until a long conversation with the allergist or some testing. I’m not willing to take that risk.

Dear Allergies and EoE,

I HATE YOU.

Forever,

Kara

November 17, 2014 Posted by | daily life, LIVING | , , , , , , , , | 4 Comments

Know the Dosage

I had a scare today, what’s new.

As I was making the boys lunch I turn to see what Tinleigh is doing. Little stinker had found Charlie’s milk cup and was drinking it. OH NO SHE’S DRINKING IT! CHARLIE GET YOUR CUP!!!

Charlie’s grabs his cup. She of course screams at him and comes after him into the kitchen. By the time she reached me she was coughing and very gunky. I picked her up and she had hives around her mouth. I grabbed a wash cloth to wash her off. She was now digging at her ears and rubbing her whole face. WOW the reaction was coming on quick. OK Benadryl – SHIT WHAT’S HER DOSAGE???

Last I knew it was 1/3tsp but how much did she weigh then? I hop on the phone and call the pediatricians office. “Hi I need the dosage amount for a 20lb baby for Benadryl right now please” I was transferred to the nurses voicemail. I hang up and call our allergists office. “Hi my baby is having an allergic reaction. She weighs 20lbs and I need her dosage amount for Benadryl” After a minute the receptionist comes back and says “The nurse said it can be different with different brands of Benadryl. You need to call the pharmacy you got it from.” I hang up.

I went ahead and gave her a 1/2tsp. Well not all of it made it in her mouth because she decided it was gross. I don’t blame her. Still coughing and itching I wanted to find out what her dosage is and if I could give her more. So I call the pediatricians office again along with texting a few nurse friends. This time I let the receptionist know that I had just called and I need the answer right now. Again, I am transferred to voicemail. By this time I am getting incredibly angry. I Google it and find nothing then call the pharmacy. Whom I’ve called before for drug advice for my kids but they told me I need to ask my pediatrician. So I didn’t have big hopes. Luckily the girl did help me!

A baby weighing 20lbs can have about 3.6ml, which is closer to 3/4tsp.

THANK YOU! So I gave Tinleigh a little more.

Lesson of the day: Always know dosage amounts before you have an emergency.

Now, not every family would think to know the dosage amount of Benadryl for their family. What if they did have an emergency like I did. They may have no clue how much to give their baby. I will be letting the doctors offices I called know what happened today. I am not a happy camper. I have jr epi pens in the house and could have used one if needed, but again, not everyone does.

In the meantime Charlie keeps apologizing to me. I told him it wasn’t his fault. Not to worry about it. She is fine. He replies “Well, at least we know” Meaning we know how allergic she really is to milk. He’s exactly right too. I didn’t know, she hadn’t had a dairy product since she was 2 months old through my breast milk. I had tried around 9 months to give her nutramigen milk based formula but she maybe only had 3 oz total of it. She didn’t have a reaction because the protein is so broken down her body probably didn’t recognize it. I could only get about an ounce in her at a time, she didn’t like it. I had been thinking about giving her some food now with milk in it to see how she did. Now I don’t have to. Now we know.

So that was just another adventure in our allergy life.

Charlie was home from school today because he has croup. Yet another new adventure we’re dealing with right now.

October 16, 2012 Posted by | daily life | , , , , , , , , | 5 Comments

Had a bigger than oops on vacation

Gosh darn if mommy didn’t have a brain fart while on vacation. I blame it on the new baby.

A few weeks after our move the boys and I went to visit my snow bird parents. Mom had everything we would need for the beach including lotion. We have only ever used Aveeno lotions. Mom had another well-known brand. After day one we quickly learned that Gage was allergic to the lotion. He had a head to toe rash. I mean this kid was covered. So for two days he got some Benadryl to help it go away and not itch. Well the second evening we were headed to the store. The boys were begging for candy before we went. Mom asked me if they could have a peppermint patty. Now, in the back of my head I knew they have an egg in them. However, we had been eating the new peppermint pieces at home right before we left for vacation. So out of my mouth comes sure give them one. Luckily she had the miniature ones, not the full size. As I’m strapping Gage in his car seat he’s coughing and starting to sound a little funny. It smacked me in the face. OMG, um mom we better go back up to the house.

By the time we are back up to the house Gage is non-stop coughing and almost lost his voice. He realizes he doesn’t sound right and keeps asking why. I call Nathan asking his opinion on the steps to take. (Nathan has done this his entire life for himself) Gage is’s not visibly swelling but I can tell his throat is. Nathan says give him Benadryl and an albuterol breathing treatment.  I do both. While mom is holding him doing his breathing I’m on the phone with my quick tech brother who is finding us an ER incase I must use the epi pen. We quickly learned we would have to make a decision quick because there’s not a hospital near and would need to call an ambulance. His breathing treatment ends and he sounds back to normal. The coughing had stopped too. We watched him like a hawk the next few hours and wouldn’t allow him to go to sleep. Everything turned out just fine.

Sure the normal parent would have called 911 and stabbed their kid with the epi pen. Until you’re in my shoes don’t judge me. We’re pretty sure the dose of Benadryl he had gotten at dinner time for his rash is what saved him. That was definitely the scariest thing for me to happen to one of them, so far. We did learn that Gage is still very allergic to eggs and probably won’t be adding those back to his diet ever!

April 19, 2011 Posted by | Gage's allergies | , , , , , , , , , , , | Leave a comment

No more instant potatoes!

For dinner last night we had these little BBQ beef cups, instant mashed potatoes and baked beans. I used deer instead of beef because we have a stock pile of deer. Plus, Gage can eat deer, I think. the cups were a deer, bbq sauce, red and green pepper mixture baked over little biscuits. I didn’t cook Gage’s over the biscuit since he can’t eat it. He also can’t eat the potatoes or beans so he had corn. Charlie had the potatoes, biscuit and corn. He can’t have the beans either due to the mustard in them. So everyone has their plate. My husband is strangely wondering what the heck these little things are. The boys are gobbling them down! This is a rarity in my house. So he sits down at the table, starts eating and says “No more instant potatoes”. Now, he said it in a joking manner but he was serious. I don’t respond and keep eating. Gage is chowing down on the deerf mixture then moves onto his corn. After a while he stops eating and starts chewing then spitting food out. That is usually the sign to move onto baby food. So I get out a few jars and start feeding it to him. He then starts scratching his face like a crazy man. I grab a wet wash cloth and wipe him down. Angry, that this happens, I comment what could it be? I then hear “Quit feeding him deer! It’s similar enough to beef. He’s probably allergic to it too.” Frustrated as all get out at this point. I argue the allergists said to feed it to him because it’s not the same protein as beef. He argues about chicken and turkey not being the same but how he can’ eat either one……..

After this dinner mommy needed a beer. Too bad we didn’t have any.

I’m trying really hard to make Gage’s meals similar to ours, basically making two dinners. I’m so limited on what I can make. Without chicken there just aren’t as many options. Now, I’m also cooking healthy heart type meals since we have some cholesterol issues.

See where this blog is going yet?!

April 28, 2010 Posted by | What's for dinner | , , , , , , , | 2 Comments

   

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