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This is a blog for my son. He has a rare auto immune disease that causes his body to attack food like it would a virus making it impossible for him to eat most any foods with out getting very very sick. This is a record of our ups and downs, doctor visits and procedures. Our trial and error life of finding out what foods are safe for our son to eat and eliminating the ones that are not from his life.

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Monday, November 10, 2014

Where has the time gone?

I have fallen behind in my updates and for that I'm terribly sorry. I have no excuses, I just haven't made the time to sit down and write out what's been going on! I still cannot believe I never came back here and posted the results of John's scope and since then he's had another!! 
Let me backtrack a little bit...

We were trialing a combination of three foods which I nicknamed "zuspinoa" which is a mash-up of zucchini, spinach, and quinoa. John was tolerating eating it and not showing any signs of a flare. I called and set up an appointment with John's GI doctor in Atlanta to do another endoscopy to confirm that zuspinoa was safe. Before the scope we decided to switch pharmacies where we get John's reflux medicine compounded. I had been driving all the way into Augusta (30-45mins) to pick up his medicine every month. I found a compounding pharmacy across the street from the clinic where John gets therapy and had his prescription transferred with all the instructions on how they made it to make sure that they didn't change anything up on us and give us anything that might cause a flare up. I also went in to talk to the pharmacist and explain John's disease and known allergens, and our need to keep all dyes and flavors out of his medicine. I assured him that John has been taking this medicine for most of his life and could tolerate the natural flavor without adding anything to make it "taste better". The next day he called to tell me that the kit they ordered to compound his medicine had flavoring in it. I knew exactly what kit he was talking about because we had tried it from CVS and John reacted to it. I explained again that he couldn't have those and that he needed to just mix it the way the other pharmacy did, without the pre made kit. He told me he could "figure it out". I should have known then that this wasn't going to work and gone back to the pharmacy in Augusta but I didnt.
I go to pick up the new medicine and it's much milkier than the stuff we used to get. I gave some to John and you could tell by his reaction that it tasted different as well. Again, I should have known then that this wasn't going to work.

We went to Atlanta for the scope and John did GREAT! He didn't cry at all and was so brave. His esophagus looked really good too! That's always a good sign but not really a good indicator of what the biopsy results will be.

Two days after John's scope he started preschool. This was something that I really struggled with for a long time. After many IEP meetings and discussions I finally felt like John would be safe at school. We had a plan for him to have his formula at school and for him to be kept away from food without feeling too excluded (I hoped). John LOVED school!! He was drinking plenty while he was there and coming home asking when he could go back. He goes three days a week all day. He still has private therapy so he couldn't go 5 days a week like they wanted him to.

John's second or third day at school he threw up. I tried not to freak out and brushed it off as him just drinking too much too fast in his excitement of being at school and wanting to move on to the next thing.
We decided that since his pictures looked good and he hadn't shown any signs of a flare to go ahead and start trialing pumpkin. I found a spinach pumpkin blend and John really seemed to like it.
Over the weekend John threw up twice.

I got a phone call from Dr L himself a week after the scope. In my experience, the doctor calling is never with good news. 
John had 95 eos. He had failed this food trial. 
We were blown away. Even Dr. L was shocked because his pictures looked so good and John still hadn't had ANY symptoms at all prior to the scope. No reflux, no behavioral changes, and no vomiting whatsoever. All the symptoms started AFTER the scope. Now we had to figure out if it was the new medicine, school, or zuspinoa. I highly suspected the medicine and possibly school too. I didn't, and still dont, want to believe that it's the zuspinoa. We switched back to our old pharmacy and stopped giving John the new reflux meds. We pulled zuspinoa and pumpkin too. Now we had to wait, a whole month, before we could scope again.
John continued to throw up at school and at home. It was happening more frequently and more severely each time. The school would make me pick up him every time he threw up even though they knew he didn't have a fever and I explained that he wasn't contagious. He would be so upset every time he had to leave school early. Most days he would throw up before 9am so he missed a lot of the day at school. 
Now that we had pulled all the new foods and medicine and he was still seeming to get worse I could only think it had to be something at school. How was I going to figure this out? Should I pull him out of school? Get him homebound? Get a shadow for him at school? 
We starting mixing his formula at 1/4 strength because in the past that has helped him keep more down. Once he'd kept that down for a few days I bumped him up to 1/2 and then full strength. I normally send "extra strength" formula to school. Mixed at 1.5 calories per milliliter. He was tolerating regular strength but when I went back to 1.5 cal he would throw up again. I hoped I'd found the culprit for the vomiting!! 
We had our next scope set up and were crossing our fingers for low numbers but didn't get our hopes up too high. Given John's symptoms we and Dr. L expected to have another bad scope.

6 weeks after the last scope we scoped John again.

pre-endoscopy number 8
Dr. L talked to us while John was in recovery about what options we had if his biopsy came back with high counts of eos. The plan was to increase his steroid dose and then sort of start ignoring the numbers. The high counts of eos weren't causing any physical damage to John's esophagus and if we could control any symptoms he had and he wasn't in any pain there didn't seem to be a point in limiting his diet so strictly.
This was a HUGE decision. Not restricting John's diet so severely could drastically improve John's quality of life. We would have an easier time finding a food for feeding therapy to bridge the gap between baby food and solid food! John could possibly have a birthday cake for his 4th birthday! 
When we got home from Atlanta we started researching. Looking for foods we could introduce in therapy. Daydreaming about our son eating cake for the first time in his life. 
And waiting for the biopsy results. 

John hadn't been throwing up since I started only giving him regular strength formula. John's feeding therapist and I were fantasizing about all the doors that could be open now for therapy. 

We took John to the hospital for their food free festival. John was dressed as The Doctor. The 11th Doctor to be exact. 

He had SO much fun. He'd never been trick or treating before so it took him a few times to figure out that he could keep what he picked from EVERY person and didn't have to trade one for another. He came home with a ton of little toys and fun things. We also gave him a Halloween bucket full of fun little non food things sort of like an Easter basket. We skipped town on Halloween morning and escaped to Gatlinburg for the weekend to blow off steam and have some family time. We had a great time even though the park was closed due to a snow storm until the last day of our weekend. We were able to get to Cade's Cove from the other side of the park before we had to head home.

When we got home I started to get anxious over why we hadn't heard from GI about John's biopsy results. It had been over a week and we normally would have heard by then. I finally gave up and decided to call them. Turns out they'd called me a week before and had my old cell phone number!
John has ZERO eosinophils!!!

The plan now is to keep all his medicines the same and continue to trial as usual. One food at a time, 2-4 foods between scopes. We are starting with pumpkin because that's what John wants. Next will be rice rusks in the hopes that even if they aren't safe, he'll be able to tolerate them long enough to transition in feeding therapy to eating age appropriate foods.
These last two scopes were a roller coaster but things seem to be getting back on track. 
John is super close in therapy to making that jump to solid food and he's loving school.
Now it's time to start planning a birthday party!!!
Can't believe he's almost 4!

Hopefully I won't get so far behind again!
Thanks for reading.

1 comment:

  1. Thank you for posting. Some of it I knew but some of it I did not know. So do you still have to drive for the meds?