LIVING

With EoE, Allergies, Asthma and a G-Tube

We Failed

Last week we drove 3 hours to our new GI to have Charlie, Gage and Tinleigh scoped. They hadn’t been scoped since June. Gage was trialing corn and Tinleigh was trialing rice and green beans. Charlie was just having a check up due to some tummy issues and what I thought was reflux.

karas camera3 001The kids were less than thrilled but I just keep reminding them getting scoped allows us to possibly add new foods to their diet.

Our start time was noon and we arrived on time. We answered questions, signed papers and got them dressed into their gowns. karas camera3 024Thank goodness for technology. Gage was waiting for me to hand him back my phone.

It didn’t take long and before we knew it Tinleigh was drinking her loopy medicine and placed in a wagon to head back for her procedure. We part ways in the hallway and she wasn’t to sure about saying goodbye. She wasn’t screaming though so I knew she would be just fine. Procedures seemed to take about an hour this time around. They took 4 biopsies in the upper, mid and lower esophagus, the stomach and where the stomach meets the small intestine. karas camera3 031Gage received his loopy medicine and placed on a cart, he was feeling pretty happy by the time it was his turn. Back he went and they informed me Tinleigh was in pre-op in a heavy sleep still. About the time Charlie received his loopy medicine they called me to go down and be with Tinleigh while she finished waking up. Just so happened I met them in the hallway with her where she started sobbing. The nurse said this was the first of the tears for her. So we took the elevator down to recovery and Tinleigh continued to sob. She didn’t want held. She didn’t want to watch tv. She didn’t want a drink. She wanted left alone. karas camera3 026So we did just that. After a few minutes I turned on the TV in hopes it would distract her from her sobbing. It did help,  until a commercial would come on. Soon Nathan came down to join us because they had taken Charlie back for his turn. Again Tinleigh started sobbing hard. So we let her sob. No explanation other than it’s just Tinleigh waking up. We’re glad she’s graduated to sobbing from the screaming wild animal she use to be.

Right before they brought Gage to us Tinleigh declared she was happy and that was it. She was ready for pop and a snack. Gage was awake when he came into our cubby. He also did not want out of his cart. So the two of them sat drinking pop and having a snack while watching cartoons. karas camera3 028Gage kept gazing off with food in his mouth and we would have to remind him he was eating. It was comical for Nathan and I. karas camera3 027It seemed to take forever before Charlie finally came to join us. That’s when the fun began. He was SO out of it yet determined to “shake it off”. He immediately had to go to the bathroom. So the nurse, Nathan and I managed to lift his limp body into a wheelchair and off we went to the bathroom. The boy pee’d for 5 minutes straight. He wasn’t joking. When we arrived back Tinleigh was sobbing again, she thought we had left her. So I calmed her down as Nathan and the nurse fought Charlie to stay in the wheelchair. He kept telling us he was going to get up and walk it off. He couldn’t even hold his head up or keep his eyes open. I was laughing so hard. karas camera3 029Everyone eventually got their IV out and some nausea medicine for the 3 hour car ride home. We got them all dressed and we were ready to head out. Everything went as smooth as it possibly could have. SUCCESS! karas camera3 030About 6 days later our GI doctor called me personally with the results. Not at all the news I was hoping for. I will admit going into the scopes I had a gut feeling they weren’t going to be good. One by one though the performing GI doctor handed me pictures after each scope and they didn’t look bad at all. Looks can be deceiving.

Charlie – charlie scopeAs you can see in the first picture there is some redness. This is at the bottom of the esophagus. My instant thought was reflux. The rest of his esophagus looked normal as did his stomach and small intestine. When the doctor called she informed me Charlie’ upper esophagus was normal. However, his lowest esophagus biopsy showed 30 eosinophils. I mentioned reflux and she agreed, so he’s now on some medicine for that. This means the eosinophils are caused by reflux not something he’s eating because it’s all contained just in the lower esophagus. She then informed me he is now showing eosinophils in his stomach. My heart sank.  I told her about the tummy issues he’s been having and so we’re starting him on some meds for that as well. Hopefully they help with what’s been going on with his tummy troubles. We have the go ahead to try to add a new food for him. A follow-up with the allergist will have to happen first. We also did some allergy blood work at the scope. Charlie still shows positive to every outdoor thing they can test for, trees, molds, grasses, weeds, animals, everything. His beef and chicken blood work were negative so after a skin prick test of those we’re hoping to add one of them.

Gage – gage scopeGage’s scope does not look bad at all. In the second picture you can see some striations, lines going down into the esophagus. They aren’t bad though, we’ve seen worse. So we were feeling pretty good about things. When the doctor called however she had different news. Gage failed corn pretty bad. His mid esophagus was showing 42 eosinophils, the disease was very active, and there is fibrosis. Fibrosis is scarring which is what causes the esophagus to become hard and narrow. This all means fail. If you look at picture number three there was a spot that the GI took a biopsy of. He said he wasn’t concerned, but biopsied it anyways. Turned out to be a cluster of eosinophils. So we now have to remove corn which includes grits, fritoes, corn on the cob, frozen corn, pop corn, taco shells, corn chips and corn tortillas. That’s huge. It’s sad. So we will remove corn and wait 6 to 7 weeks for his esophagus to heal. At that time we’ll meet with the allergist and figure out what he might trial next. His blood work was promising so the skin prick testing will hopefully coincide with what the blood work showed and he’ll get something good back like chicken, dairy or apples.

Tinleightinleigh scopeHer esophagus was a little inflamed but nothing horrible like we’ve seen in the past. We could see some striations. Same as Gage though her esophagus was showing eosinophils, the disease was very active, and there is fibrosis. She knocked it out of the park though showing more than 50 eosinophils in her entire esophagus. This is back to where we were prior to getting the tube. So rice is a huge fail. Since she was also trialing green beans they have to be removed as well. We will trial green beans at a later time and they will more than likely pass. This really stinks for Tinleigh. Rice is 90% of what she was eating when she ate. She still gets the majority of her nutrition through her tube. So we were pretty bummed for her. As usual Tinleigh’s allergy blood work came back clear. Nothing was positive. So after a lengthy discussion with the doctor we may switch gears with Tinleigh and follow a different route for getting foods back for her. Instead of trying to think of foods that have many various paths we’ll go with foods that are just likely to pass. I was trying to keep her diet similar to Gage’s for my own sanity and to keep things a little easier for me. Like the other two she’ll have to do some skin testing at the allergist but first we must wait 6 to 7 weeks for her esophagus to heal. They will all be scoped again 3 months after they start their new food.

We sat the kids down last night and explained the results. There were no tears. I don’t think the reality of it sank in because I quickly changed the focus to talking about allergy testing and what we might get to try next. These next 6 weeks will be hard, especially for Tinliegh as she will only have blueberries and olives to eat. Gage will slowly realize how many corn foods he was eating and that will suck. We’ll muddle through it though as we always do and keep on LIVING!

family_praying_hands

January 15, 2015 - Posted by | LIVING

5 Comments »

  1. Like your daughter, my daughters allergy tests have all come back negative for everything, and yet she is MISERABLE…since we are fairly new at this, can you tell me what your allergist does with negative tests but obvious symptoms? Have you done patch testing?

    Like

    Comment by Kat | January 15, 2015 | Reply

    • Kat – patch testing did not work for us and i believe the top gi doctors dont use that as a testing method anymore. Has your daughter removed the top 8 foods? Thats where you should start if you haven’t. If you have then its just a guessing game really. In our experience meats and grains seem to be the worst foods. What have you eliminated from her diet so far?

      Like

      Comment by livingtheallergylife | January 15, 2015 | Reply

  2. Kara – wow – I am just in awe of all this disease entails 😦 thinking of you guys!!

    Like

    Comment by tara justice | January 15, 2015 | Reply

  3. I am so sad that you all have to go through this! My prayers are with all of you! Magi Duncan

    Like

    Comment by Magi Duncan | January 16, 2015 | Reply

  4. Kara I just want to say what I have told you before…..you are super mom! You amaze me! Thank you for being strong for your beautiful kids, for sharing your story & helping others. Much love to you sister. 🙂

    Like

    Comment by Miranda | January 27, 2015 | Reply


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: