LIVING

With EoE, Allergies, Asthma and a G-Tube

Valentine’s Day Spoiled

Sigh. I dread holidays while the kids are at school. They play a game or two and have a treat. You would think that having done this for 6 school years I would be use to it. I’m not though. It always makes me sad that I have to take in a special treat for my kids. I wonder what they’re thinking as they see there friends eating things they can’t have. Especially the fun party treats. Does it make my kids sad? They’ve never expressed sadness to me. I do wonder.

Today was another typical Valentine’s Day party for Gage. We made the box, made the cards and I had the special treat ready for him. I knew he would get treats from his friends he can’t have and that’s another bowl of sadness. I do see him get upset as I pluck treat by  treat away from his pile of goodies. I keep catching myself lately saying “Your day will come”. I think maybe that’s how I can keep hope in their heart, and mine.

As usual the girls are in tow and we went to Gage’s class room for the party. When we arrived at the school Gage was waving to me from the nurses office. It was time for his last bolus of the school day. So we waited on him and then headed up together. When we walked into the room we stood near the door where the Guinea pig is as the kids played a game. I knew the class was going to have ice cream sundaes today so I didn’t want Tinleigh near the food table. I said hello to Gage’s teacher and tried to keep the girls near me. Once they had reached their max of waiting I took them down the hall to say hello to Charlie’s 4th grade teacher. When I turned around to head back to Gage’s room there he was standing in the bathroom entrance. He says to me “Mom there’s peanuts in the room.” I was a bit confused. I asked him what he meant and he said they told him they had peanuts for the ice cream sundaes. My heart crumbled to the floor right there in the bathroom entrance. I told him we would have to leave that it just wasn’t safe for him. He pleaded with me that they hadn’t exchanged Valentine’s yet. I told him to go ask his teacher if they were eating or doing Valentine’s next. So he went to ask as Tinleigh be-bopped into use the restroom. I walked towards Gage’s classroom but stayed in the hall so Tinleigh could find me. Gage came back out and told me they were going to eat then wash hands and then do Valentines. I explained that it still wouldn’t be safe for him because they would be touching their food and if someone didn’t wash good enough or got peanuts on something then touched his Valentine it wasn’t worth the risk. He looked sad so I quickly told him we would go buy a new video game. He was okay with that. As I stood in the hall I overheard the helper mom say “I just want to point out that there are peanuts here on the table so if you’re allergic don’t take any.” Did I really just hear that? Once Gage gathered his things and came into the hallway I asked him if there were any other kids in there with a nut allergy because we needed to get them out as well. He said he was the only one. Off we went.

We had to stop in the office so I could check Gage out. We briefly spoke to someone about what was going on and it was quickly made known to the assistant principal. What happened is not resolved yet.

1gageThe thing was though I had found a special ice cream bar that Gage could have. He needed to eat it before we left because it was melting in my bag. So we camped out in the entrance to the school and Gage enjoyed his “ice cream” treat.

I am upset that the event happened. It did bring me out of my allergy world bubble. I didn’t know much about allergies when our journey began. I didn’t have allergies and neither did anyone I knew. Now I know too much. There are still people in the world that aren’t familiar with allergies. Even though Gage’s class is peanut free and there’s a sign on the door I guess that mom just assumed it would be okay if Gage didn’t eat them. What she doesn’t know is that if anyone touched Gage with peanut residue on their finger, or if Gage touched something that has peanut residue on it, it would have been bad. It’s happened before and Gage went into a full blown asthmatic anaphylactic reaction. I’m sure the party mom wouldn’t want to witness one of those in front of a classroom full of kids.

Poor Gage. Even though he got a new video game out of the day he will always remember his 3rd grade Valentine’s Day party the one where “they brought peanuts”.

February 14, 2017 Posted by | Gage's allergies, LIVING | , , , , , , | 4 Comments

Why Not?

So if I’m getting back into blogging why not just turn this into our allergy reaction diary instead of a blog? Is there a difference?

I need notes. The daily what happened to whom. I really need someone just following me around all day with a pad and paper writing things down for me.

Today was great. Aside from Layton’s typical not wanting to eat anything. Which has been worse for the last week, but I am blaming her cold right now.

This evening Gage started in with his typical “I’m hungry”. He says this even while hooked up to his feeding tube. He misses eating more than I could ever imagine, even though his tummy is full. I ask him what he wants and his response “something crunchy but chewy, something like French fries”. This kills me to the core. Not only do I not have a solution for his want, I painfully know that he will never have French fries. The last time Gage ate potato he vomited everywhere, he was one. He only knows what a French fry looks like. He has no ide what it tastes like. He’s anaphylactic to potato, he’ll never taste one.

You see, now, when Gage asks me for something to eat he’s very descriptive. He knows what texture he wants, he knows if he wants sweet or salty. He wants to eat real food. It makes me so sad that it’s also started making me angry. There is nothing I can do for him. Nothing.

I think though, Gage still has hope. That’s the one thing I feel is slipping from me. Even though Gage is so frustrated and hates his disease, he still see’s the future and him not having a feeding tube. He can see himself eating food. We’ve been in this for 7 years and we’re not where I had envisioned us being. I guess that’s why my hope is falling.

It’s all the little events too that are killing my spirit. Like tonight. Once Gage settled on some raw cauliflower with salt I thought all would be well. I knew it wasn’t what he really wanted, but he crunched away. Then after he had crunched through one big tree he says mom my eye is itchy. I told him he was getting in the shower next and he would be okay. However, he comes over to me and says and there’s a bump on my lip. Sure enough he had a little blister right there on his lip as his eye was becoming more and more red. He went into the bathroom to hop in the shower. When I took him in a towel I noticed he also had a big hive on his back. That’s when the partial panic sets in. Is this going to be a full blown anaphylactic reaction? So we gave him a Benadryl and I told him if he starts feeling anything in his throat or with his breathing to get out of the shower and come get me. Luckily, his reaction didn’t get out of control. His throat did hurt a bit but the Benadryl kicked in and he was fine.

So now we have the issue of what the heck happened? Was it just the salt? Has he become allergic to cauliflower? I’ll have a talk with him about it and see what his judgement is on it. I’ll let him make the decision on if he tries it again or not.

Be strong and courageous.

Do not be afraid;

do not be discouraged,

for the

Lord your God

will be with you wherever you go.

Joshua 1:9

 

February 6, 2017 Posted by | Gage's allergies, LIVING | , , , | 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

6 Weeks

The last few days have been ok. Gage has asked for popcorn, chips and a few other corn items. I remind him that he can’t have corn anymore. He says okay can I have… and asks for something else. He doesn’t complain. It’s just matter of fact and that’s it. He has asked why corn messed him up and we talk about it. He hasn’t complained or thrown any fits. Tinleigh has also asked for food. We offer her blueberries, olives, Popsicles, candy or to make her snow. Of course she’s sick of all of those things and says no. So we try and distract her by suggesting she play something. It’s going to be a very long 6 weeks.

We’re on day 3.

I feel horribly for them.

I can’t imagine being in their shoes. wpid-20150118_103535.jpg

So, that’s just what I’m going to do, walk in their shoes.

I am going to limit my diet down to just a few foods for the next 6 weeks.

NO cheat days.

NO “just one nibble won’t hurt.”

So here’s my list of foods I CAN eat:

chicken

spinach

yogurt

banana

blueberries

oatmeal

raisins

eggs

green beans

cucumber

peppers

flour tortilla

Cliff bars

Starting tomorrow I will only eat these foods for the next 6 weeks.

I’m hoping to get insight on how my kids might feel mentally about food. How it affects them socially. Just get an overall sense of how it is for them.

Anyone want to join me?

Follow along to see how I’m doing.

Sponsor my 6 weeks by donating to CURED and help my kids get the cure they need.

Help cure them so they can eat more than just a few foods.

Make sure and write in Honor of the Root family when you make your donation. karas camera 1314

January 18, 2015 Posted by | daily life | , , , , , | 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

Our EoE video

I’ve been wanting to do a video for a few years now and have never found the time to do it. Even now I’m typing one handed and feeding Layton. I stayed up until 2am last night after the kids went to bed and got a video made!! Then of course I had issues converting it and uploading it.

Here it is! It shares a quick glimpse of our journey with EoE from January 2010 until today.

EOE

May 23, 2014 Posted by | LIVING | , , , , , , , , , , , , , , , | 1 Comment

Please help us find a cure

You are just a few clicks away from helping my kids one day be able to go to birthdays and eat what the other kids are eating.

One click away from my kids going out for breakfast on their birthday.

One click away from going to the movies and buying a treat.

One click away from a family vacation, which is virtually impossible unless i pack an entire trailer of food.

One click away from my kids going to the dairy bar or getting a treat from the ice cream truck.

One click away from me not having to pack a duffel bag of food every time we leave the house for more than a few hours.

I think most importantly, one click away from me cooking one dinner for my family that we can all sit down and enjoy together.

You’re also one click away from helping many families put an end to the staggering grocery bills.

One click away from helping end the outrageous hospital bills that are never ending because of the maintenance of this disease.

Please help us find a cure.

Forgo you’re expensive coffee tomorrow and donate that money to CURED.

Donate what your family would spend when you go out to dinner.

Donate the cost of the candy your child picks out in the grocery line that mine can’t eat.

Donate $1.

Every little amount helps my kids come closer to one day being able to eat a normal healthy diet.

DSCN3964

May 19, 2014 Posted by | LIVING | , , , , , , | 2 Comments

Adjustment period: Day 1

We’re home and have to get back to it. I needed to get Tinleigh adjusted and to her new normal. That morning I was up at 7am to hook up Gage in bed. Then off to the shower. I packed lunches and got the boys all set for school as usual. Tinleigh still slept. Mom ran the boys to school for me that morning while I stayed at home and hooked Tinleigh up for her first morning feed. Our issue with the day was going to be the feeding tube pump. We only had one. So I sent Gage to school with his feeding tube book bag and formula bag all ready. Once Tinleigh was done mom was back and I had to leave for my monthly ultra sound to check on baby’s growth. Before my appointment though I had to run the pump to the school so Gage could eat lunch.

DSCN3977

Tinleigh flushing her extension tube.

Mom stayed home with Tinleigh and they played all morning. IMG_8812She played pretty low-key. She was able to get up and move around but was very cautious. She wouldn’t bend over to pick anything up. Stayed very straight. So they did stickers, tea parties and played on my tablet. IMG_8813

I returned from my appointment and had to run right to the school to get Gage’s pump for Tinleigh’s next feed. Luckily while I was gone I had a call from the home health letting me know we would get a delivery of her pump and back pack that evening.

She did pretty well with her feeds once she was hooked up. The anticipation of the tube hurting made getting hooked up and unhooked hard. I hated playing tough mommy but she had to do it. When Gage was home from school he was right by her side coaching her through it or trying to help distract her. What an awesome big brother he is. I’ve never see the two of them interact like that.

We did have a puke incident. She had been drinking water though before a feed. I think we just stuffed her.

She went to the pantry a few times asking for food. Not because she was hungry, but because it’s habit. I would ask what she wanted. She would point to something and I would just tell her she can’t have it because it would make her puke. She very much understands what it means to puke. Then I would offer her a pixi stick, fun dip or sucker. She would pick one and be happy with it.

The big event of the evening was the back pack arriving! DSCN3980It was so adorable and tiny. Just her size. It did make me a little sad but I had to accept it. Tinleigh thought it was just wonderful. “Just like Gage” she yelled in her own Tinleigh language. She wanted it right on. So we put all of her stuff in it and got her going. DSCN3981I highly suggest getting a tiny back pack so your toddler can run free!DSCN3982

January 24, 2014 Posted by | LIVING, Tinleigh's allergies | , , , | 1 Comment

Home

That evening the Gage met us in the garage. He was so excited to see Tinleigh and have her home.  He immediately wanted to see her button. I told him we needed to get her hooked up very soon because it was time. As Tinleigh and I made our way into the family room Gage took off. After a few minutes I went up to the kitchen to get her formula ready. Gage was getting things ready for her. He had gotten a new formula bag out and had it hooked up to his pump. He was filling the little water bottles with distilled water so we could flush her when we were done. He also had the pitcher of formula sitting on the counter. I can’t imagine how he felt. He was so happy to help out. Shortly after he got his button he would ask us when everyone else was going to get a button. His little dream came true.

So we sat Tinleigh down on the couch and proceeded to try to hook her up. Of course she was scared it was going to hurt and didn’t want anyone touching her. Gage was right by her side trying to distract her, telling her it doesn’t hurt and that she needs the food in her belly. It was so sweet. Finally the two of them have a connection. One of us sat with Tinleigh during her feed and when she was done Gage was right there to help flush out her extension tube.

I gave her a bath after her feed. One thing to know about your new tubie is that they can get it wet but they can not submerge it under water for at least two weeks. She played for quite a while in the tub. I bet it made her feel like a million bucks.

That night I laid her down at her usual 7:30 bedtime. She slept so soundly the entire night. She didn’t wake up until after 9am the next day. Poor thing was exhausted. She had not had her full daily calories by bedtime, but we assumed her tummy had shrunk and didn’t want to push it. I also was not about to hook her up over night she needed some good sleep.

I was glad we went ahead and came home instead of staying one more night.  DSCN3976

January 21, 2014 Posted by | LIVING, Tinleigh's allergies | , , , , , , | Leave a comment

Something’s fishy

It’s been a great summer. The only epi pens used were on Nathan. That’s just stubborn him going out to lunch where he probably shouldn’t.

We attempted a triple scope day this summer. Couldn’t have gone better. 20130815_142150The results of that day is where we are now.

20130815_160458

Charlie was clear. We had removed chicken from his diet. That did the trick. So his only meat was pork. We decided to give fish a try. He had never had it and went both ways on allergy testing for it. After a four-hour food challenge at the allergist’s office we are happy to announce Charlie is trialing fish! He LOVES Gorton’s fish sticks. I love how easy they are.IMG_20130930_105929

Gage’s scope results from that day were wonderful as well. Gage is now up to seven foods: blueberries, rice, strawberries,lemon, cocoa, tapioca and green beans. We really wanted to add a protein to Gage’s diet. The only thing we had left was fish. So after a negative blood test he did the same four-hour fish challenge at the allergist’s office. Let’s briefly touch on what happens at a challenge with such a highly allergic food. I bring the fish of choice ready to go. They first do a skin prick test with the fish that I bring in. Next they rub fish on his lips and leave it sit for 15 min. In the mean time I’m sitting there watching him like a hawk making sure there are no hives, coughs, itches or anything that looks like a reaction. They then have him try to hold a little piece in his mouth for 15 minutes. After that, they give him bites to eat every 15 minutes. Each bite increases in size double of the previous bite. Each bigger bite results in my nerves climbing through the roof wondering “is this the bite that will set him off into a reaction?” It’s very exciting each time we hear the timer go off, no sign of a reaction and they come in with another bite. Very exciting for a little guy who loves to go fishing but has never had the pleasure of tasting it. The mom side of this is absolutely nerve-wracking. Imagine feeding your child something you have done your best for the last 5 years to keep away from him. Lots of praying went on in that room. There were no tears allowed. It was Gage’s exciting day, this mom wasn’t going to ruin it for him. I’m not sure how I made it through that day, or Charlie’s. I did though, and so did they. Now they both get to eat fish. Gage doesn’t get to enjoy the Gorton’s fish sticks. However, I have found a wonderful rice flour based tempura I can use to make him fish nuggets. He loves them.  I love that he loves them.IMG_20130924_165944

The results of that scope for Tinleigh were horrible. On the highest dose of steroids she was still very inflamed and with high eosinophil counts. So we removed the last of the grains and meats which were rice, oats and pork. Our hopes were to get her to  drink more elemental formula. The pressure was on. I managed to start getting 26-28 oz a day down her. Which was great because with not much left for her to eat I couldn’t figure out what to feed her. Then she caught a cold and started throwing her cups of formula back at me saying YUCK!! Now she will only drink the unflavored mixed with some coconut milk in her bed in a bottle. Don’t worry, we’ve seen the dentist and her teeth are fine. We recently had her scoped again. Results were confusing, she had less than one in the mid and upper esophagus. Her lower esophagus was actually worse than last time, more than 50. WHAT?? How is that? We’re hoping that its reflux. Although that’s a high number for reflux. So we are starting her on a reflux med and will scope her in 8 weeks. We are also going to do a fish trial on her. Since she’s stopped drinking as much formula we need to get something else into her. Do I agree with this plan? Not 100% I don’t like her on the steroid, all we’re doing is masking anything that may still be effecting her from her diet. I hate adding foods when on steroids. Again, the steroid just masks problems. However, she doesn’t have enough food to thrive. She’s two, she has to grow. I did manage to help her gain some weight while I was getting her to drink the formula. In my perfect world we would add the reflux med, stop the steroid and re-scope in 8 weeks. That wold be the real truth of what’s going on with her.DSCN3424

So my kids are now eating fish, Tinleigh will trial it tomorrow. Who would have thought I would ever be preparing fish for these three? I’m so happy that its working out. I just hope and pray the scopes in December are still good.

October 8, 2013 Posted by | Charlie's allergies, Gage's allergies, LIVING, Tinleigh's allergies | , , , , , | 3 Comments

%d bloggers like this: