LIVING

With EoE, Allergies, Asthma and a G-Tube

Two year tubie anniversary

karas camera 053Two years have passed since Gage had his tube placed. It seems unreal to me. I have a 6 hear old with a feeding tube. Never in my life did I imagine that happening.
Gage is now over 50 pounds. If I remember correctly, he’s gained almost 20 pounds in two years. As a baby and toddler, before all of this started, he was always in the 70% range for height and weight. He dropped significantly when we had to start eliminating his diet. I’m so happy to say he’s back to 70%.karas camera 770He and I had a quiet moment alone tonight. I told him it’s been 2 years. I asked him how he felt about his tube. Shockingly, he said he likes it because he doesn’t have to eat. Then he giggled. I said you don’t want to eat? He laughed and said no, I like to eat, but doing a bolus is so fast. Then I don’t have to sit there.  I’m so happy he’s at peace with it. For quite a while he always said he wanted it out. I’m sure he still does, I didn’t ask him though.karas camera 1070He’s been trialing corn since June. I think it’s going fine. He doesn’t have any symptoms and doesn’t appear to have an Ige allergy to it. He will be scoped in January to see if it’s a pass or fail. Gage was at 7 foods on his one year anniversary. He’s now eating: green beans, strawberries, blueberries, lemons/limes, oranges, rice, tapioca, cocoa, black olives. Fish is up in the air and he’s trailing corn. So he hasn’t added much. He had one pass last year then one fail. So he had to remove those trial foods which were pork, tomato and cherry. We got him back to a zero count scope before starting corn. Since moving and finding new doctors he’s been trialing corn about 6 months which is way longer than usual and another reason we didn’t get to add much this year. karas camera 286 karas camera 269Gage has had a few strong Ige related problems since we moved. First one happened this summer on my parents farm. Gage went for a ride in one of the farm vehicles. They had been planting soy beans. My kids have been around the farm plenty of times and never had an issue. So off they go then back comes Gage. Swollen eyes and coughing horribly. karas camera 146 karas camera 145It is safe to assume now that he has a strong soy allergy. We had never had this problem in the past. Allergist did tell me that once removing things some allergens could become worse if he comes in contact with them. Gage’s peanut allergy has also become worse since diagnosis. We showered him down, gave him Benadryl and an albuterol treatment and he was ready to go play again. No more vehicle rides though.karas camera 445Another reaction Gage recently had was to salmon. That was horrible. We still haven’t tried any fin fish again. I think we might do it at the allergists office. karas camera 344Overall Gage has not let this tube slow him down. He’s still LIVING life to the fullest. Sure we’ve had our moments of he wants this or that. “It’s not fair.” “Just let me try a little bit.” “No I don’t want a book bag/bolus.” Those are the crappy times we are going to have while we fight this battle. It breaks my heart every time I have to tell him no and be a stern mom. It’s my job though to keep him healthy and safe.

While we moved across a few states this summer we got the meet a special little tubie friend whom I had only met on Facebook. It was very exciting for them all to see each other and know they’re not the only one. karas camera 1276Gage played on the beach karas camera 1274Had a shaving cream fightkaras camera 1266Swam in a lakekaras camera 040Had a bonfirekaras camera 136Flew on a planekaras camera 197Swam at the local poolkaras camera 113Exploredkaras camera 034He even got to go out to eat!karas camera 199He went trick-or-treating

karas camera 1183He traded in his candy for a new toykaras camera 1181He is LIVING!!

karas camera 347These four kids are so lucky to have each other. They love one another. When it comes to food and this darn disease, they have so much compassion for each other. They comfort one another, they help give explanations and hope when food is present they can’t eat. They talk about needles, shots and IV’s. They talk about “one day I’m going to eat”. I hate they go through it, but I’m glad they’re in it together.

Together, Gage went another year with his tube!karas camera 041

December 5, 2014 Posted by | Gage's allergies, LIVING | , , , , | Leave a 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

Charlie’s test

Charlie had his turn at the allergist. I hate putting him through it. He absolutely fears needles. He’s had some bad experiences that are just forever in his mind. The night before I told him we were headed to the allergist in the morning. He started crying. I told him Tinleigh did it and Gage did it. I also told him Gage didn’t even cry this time around. Which, he didn’t, but they did it on his arms and there weren’t too many. Gage assured Charlie it wouldn’t be bad. They always try to comfort one another with kind words.

After dropping Gage off at school Charlie and I made the hour drive to our new allergist. Daddy kept Tinleigh because I knew it probably wouldn’t be fun in a tiny room with an upset Charlie and screaming Tinleigh.

We arrive at the office and are called back to the room. Charlie is talking the nurses ear off as he usually does. We get in the tiny room and he freaks. We assure him the needles won’t happen quite yet. Then I see the doctor. We discuss what we want to test for. He leaves the room and Charlie makes his move. I knew he was scared and I didn’t blame him. I promised him a milk shake when we were done and we talked some more about Gage and Tinleigh being brave when they did it. He came out on his own. Thank goodness. The nurse comes in with trays of vials. My stomach dropped. She asked Charlie to hop on the table and take his shirt off. There were too many to do on his arms. Then my chest got tight. She showed Charlie on his hand what she was going to do. He begged to see the needle. I explained she had to keep it clean until it was time to use it. We got him on his belly and I asked her if she had a friend to come help. I knew someone would have to hold his legs. She quickly grabbed a friend and went to work. Charlie was so nervous, he kept trying to peek over his shoulder. We assured him she wouldn’t get the needle out until she tells him. I had the dvd player right in his face to try to distract him. It didn’t work. Then it was time. He had 66 drops of liquids on his back. That meant 66 tiny needle scratches. I held his little shoulders down and she went to work. It was horrible. She worked quick though and got it done in maybe 30 seconds. He begged her to stop and give him a break. I was glad she didn’t, I don’t think he would have let her finish. Wow did he welt up. We retested him on every inhalant. That would be trees, grasses, molds, animals and dust. He is allergic to EVERY inhalant but one mold. EVERYTHING. The only foods we tested him on that he’s currently eating were chicken and oats. Chicken was positive, as it was before, and oats were negative. Beef and soy are now negative which was a shock. Eggs are now testing positive, when in the past they were negative, but he doesn’t eat them because of getting hives. All nuts and all fish are still positive, strange because he’s eaten lobster and shrimp just fine. It’s all a jumbled mess. So what do we do? His biopsy numbers are low and could simply be from the reflux he’s been having. Then again it could be from the chicken he’s eating and he’s starting to flare. Do we feed him beef when it made his lips blister before? What if beef is what made him flare in the very beginning?

It’s just all a risk. So Nathan and I decided we’re taking away chicken, keeping him on his reflux medicine and slowly reintroducing beef. We’ll keep him this way for the next 6 months and then re-scope him. If he starts having issues then we’ll remove the beef and get him scoped sooner. I won’t allow him to eat beef at school or a McDonald’s burger quite yet, but at home with mom and dad it will be allowed.

November 6, 2012 Posted by | Charlie's allergies | , , , , , , , , , , | 3 Comments

6 Weeks

We met with the GI doctor. sigh  We’ve come to the conclusion Gage is just a very allergic kid. Since we haven’t found his trigger his body is just overreacting to everything he seems to eat a lot of. That is why he’s showing an allergy now to millet, sorghum and chicken. Gage is also still growing. He recently had another growth spurt and is on the upper side of the growth scale. The combo of those two facts have put us face to face with two choices.
1. We give his diet one more change removing the newly positive foods PLUS dairy.
2. We go ahead and put in a feeding tube.
We have the best GI doctor. She asked me if we wanted to make the decision or if we couldn’t she would do it for us. I expressed that Nathan and I had spoken all week about what we wanted to do with Gage. We knew in the back of our minds what was coming but we never said it to each other. We only spoke about the choices we would make in changing his diet. So I let the doctor know we wanted to give it one more go around before calling it quits. I can’t in my heart just do the tube if I feel like I can try one more change. I have to know I’ve done everything I can for him. Gage’s esophagus is at a point where we start risking him stricturing shut. So our game plan is to change his diet and scope again in 6 weeks. He won’t be completely healed by then but we will be able to tell if there’s improvement at that time. If there is no improvement then it’s time to put the feeding tube in.
So Gage’s new list of do not eat foods are:
beef – along with anything containing gelatin
chicken/turkey
eggs
wheat
rice
oats
sesame
corn
millet
sorghum
potato
sweet potato
soy
celery
mustard
tree nuts
peanuts
fish
shellfish
pea
dairy
buckwheat
coconut – tested low but we’ll use it sparingly for baking. I don’t think I would risk letting him drink it daily and his body starting to highly reject it
apple is in the blood test and possibly may get taken out
We are still waiting on the final word from the GI doctor for the blood test we had done. Chicken was a low positive and we didn’t skin prick for rice or oats so those were in the blood test as well. I highly doubt we can add rice in but it would be a huge help.
We’ve made it through the weekend ok. It’s going to be a tough 6 weeks, but hopefully worth it. The big thing in our house is the boys have hot cocoa every morning. It’s basically milk with hershey’s syrup or carnation instant breakfast warmed up in the microwave. They drink it religiously like I drink coffee. So we had a talk why he can’t have it. He told Charlie immediately that it wasn’t fair for him to drink it if he didn’t get to. So I’m now on a panicked search to find him some hot cocoa. There isn’t really a replacement milk we can use. Coconut, occasionally with risk. Goat’s milk we don’t want to risk since he’s so allergic to beef and broke out in hives when he ate deer. We would really have to test him on something like hemp before giving it to him.  Charlie and I had a talk and Charlie told me right away he would go hide in the basement to drink his hot cocoa. I laughed a little. He won’t give it up, but he’ll figure out how he can still have it and make everyone happy. So for the last two days he’s drank it in the bathroom.
I attempted pancakes for Gage Sunday morning. By noon I had “donuts” ready. Lot’s of tears and ruined batches of goo but I came out with a winner and they both at them right up! Phew! Keep an eye out for the “I’m allergic to everything donuts”.
I have noticed in just a short 36 hours of being off of dairy that the dark circles that are always around Gage’s eyes are gone. I do hope it correlates to what’s going on inside as well!

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August 26, 2012 Posted by | Gage's allergies, LIVING | , , , , , , , , , | 4 Comments

   

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