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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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Tuesday, November 13, 2012

Scope # 4 Results

Well, to start off, the past 4 days have been rough, to say the least.
Friday, John was his normal self, eating fine, sleeping fine, everything was a-okay and normal.
Saturday, however, John started throwing up. I called the GI office in Greenville and the Doctor on call called me back with in five minutes. She didn't think that it was a reaction to the anesthesia because it had been two days since his scope but she was concerned about John becoming dehydrated due to his limited diet so off to the local ER we went. They evaluated him, decided that he did not yet need fluids and gave him some zofran to help with the nausea and make it possible for him to keep some fluids down. That worked for about 5 hours and he could only have it every 8. Sunday, still vomiting, more zofran. Monday, all seems to be okay, he's keeping down half strength formula and sleeping and playing like normal. I thought it was just a bug or virus and it had finally run it's course and we were past it.
This morning, more vomiting!! I'm losing my mind here! It's not looking like a bug. It's looking all too familiar.
It's looking like John is having an EoE flare up.
So I start making phone calls and wracking my brain for what on earth he could have been exposed to that would cause a reaction 6 weeks into a food trial when he'd previously been symptom free.
I took him to Dr. C and he ruled out virus or bug like we thought since John's only symptom is vomiting. He also ruled out an ear infection, strep, an intestinal blockage, and appendicitis. 
So, now I'm just waiting for the call from Dr. M's office to advise us on what we should do from here and to give us the results of his scope. 
John has been snoozing off and on all morning, something he hasn't done since he was 6 months old, so I know he does NOT feel good. 

After what seemed like forever we finally have the biopsy results back...

That's his eosinophil count.
There should be ZERO.
It's not bad, but it's not good either. It means that his disease is not in complete remission anymore, but it explains his vomiting. He has mild esophagitis. 
When his disease was full blown and untreated his count was 70-104.
However, we do not think it's from the sweet potatoes. We believe that it might be coming from a new PPI (proton pump inhibitor, like nexium or prevacid) that we had to switch him to, two days before his scope, because the pharmacy ran out of an ingredient in his normal prescription.
So, the plan of attack now is to get him on a new PPI, go elemental again and let things calm down. If John isn't back to normal by this time Thursday then we will do another round of steroids (one of my least favorite words this last year) and then wait some more. Once John is symptom free again we will start the sweet potatoes back up again. I'm not sure if Dr. M is going to want to do another scope before we start another food trial or if John's symptoms alone will be enough but either way our next food trial has been pushed back, for at least a couple of weeks.
I have some mixed feelings going on for sure right now. I'm furious with the pharmacy, I'm heart broken for my sick boy, I'm disappointed about having to stop sweet potatoes, and I'm anxious to get John back to normal and back on track, but I'm thankful that there is a pretty good chance that sweet potatoes are safe.
Now, because this wasn't  the happy celebratory post I expected it to be, I'm going to do a picture dump instead :) Enjoy

Friday, November 9, 2012

Halloween and Scope #4

It’s been a while since I updated last and a lot has happened!
Halloween was uneventful since there isn't much we could do with John this year. I made his costume and he was the most adorable Peter Pan that ever was, in my humble opinion. 

Next year I plan to make up some goody bags with little non-edible treats and a note explaining about kids with food allergies that can’t eat candy and other foods to explain why I’m giving toys instead. I wanted to do this this year but didn't think of it in time to prepare anything. We also plan to take John to do the traditional trick or treating and let him use his candy like money to trade for toys and things and then we will either eat the candy ourselves or donate it. 

We've been on the sweet potato trial for 5 or 6 weeks now and this week John and I went to Greenville for his endoscopy to check if they are a safe food for him or not. 
We stayed at the Ronald McDonald House in Greenville and first off I want to say “WOW”. What an amazing thing they have going!! John was greeted with a hand made quilt and a wooden car.

 I was  fed two meals every day and  had access to a kitchen stocked full of food for snacks and lunch. There was a toy room stocked full of all sorts of toys for John to play with and I didn't think he would want to leave!

I felt very safe being there without Doug, which I don’t think I would have, completely, in a regular hotel. The doors are all locked with a code that only residents have access to so not just anyone can walk into the house. 
It was also really nice to be able to talk to other parents with chronically ill children while I was there. It made things feel a lot less lonely. I read somewhere the other day that the feeling of loneliness isn’t about being alone, its about feeling like no one understands/cares.
I’ve decided that I want to give back to the RMH. I’m going to call the local RMH and see what I can do/give. I’m hoping to make some blankets to donate and maybe some meals and some of my weekends too.  I will probably be spending more time than I care to at the Greenville RMH so I feel like the least I can do is give something back to the one in my own town, that thankfully, I do not have to utilize.

This was John’s 4th scope in a year and on the anniversary of his first scope, almost to the day. The day after to be exact. He did well, like he always has at Greenville Children’s. 

It will be a few more days before we get the results from the biopsy taken during John’s scope but Dr. M said his esophagus looked good. He also said it looked like there might be some slight irritation in his stomach but it’s hard to tell just from looking. 
So we wait. 

In the mean time I’m making plans. 
We met with John’s dietician while we were in Greenville. She is a little concerned with the rate of John’s growth. He has only gained one pound since June, weighing in at 21 lbs. So we are looking for a high calorie, high protein food for our next trial. It was between Bananas, Avocado, or Quinoa (Keen-wah). Avocado and quinoa are the better two options as they are both super foods meaning they both are packed with vitamins, are high in good protein and good fat. Avocado was what I really wanted to do but with the holidays coming up I didn’t want to have to deal with the storage issue of them turning brown when exposed to air. Also it’s the wrong season for them so finding fresh ones that he could eat that same day would be hard. 
So, quinoa it is!

We are going to start with the flakes and add them to his sweet potatoes (assuming he passes them!) and gradually increase the amount of quinoa and decrease the sweet potatoes until I have him eating just quinoa.
With quinoa I can do soooo much! Pancakes, crackers, flat bread, and at some point , when he has more safe foods I can use quinoa to replace a lot of things, like oats, flour, wheat and pasta in other recipes.
I was super nervous and hesitant to start the sweet potato trial but I’m waaaaay excited about starting the quinoa. I can hardly stand it. 
We also talked about John’s texture issues and she said I needed a better blender/food processor. 
Apparently there is two out there on the market that will puree an apple or a pear and it not be gritty AT ALL. Seeds and all! The grittiness of the apples was the reason I had such a hard time getting John to eat them! The problem is that these blenders are insanely priced! I’m talking like $500.00- $700.00!! 

I guess for now, I’ll stick with my basic cheapo food processor and smooth foods for trials, like avocados and bananas. Maybe by the time we start trialing other foods I wont even need to puree them anyway! 

I will update again as soon as I get John’s pathology report back. I hope it will be with good news!!