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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...

9
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








3 comments:

  1. Keep your head up, Love! I know how nervous you were about the PPI and pharmacy mishap. I really hope that their not having what you needed is what caused the flare up and NOT the sweet potatoes! =-)

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  2. Thanks for sharing as always I Love the photos. I truly hope is was the mix up and not sweet potatoes. **hugs** I know its hard to deal with a set back as we have had to deal with one recently, best of luck while moving in the right direction.

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  3. Thanks for sharing as always I Love the photos. I truly hope is was the mix up and not sweet potatoes. **hugs** I know its hard to deal with a set back as we have had to deal with one recently, best of luck while moving in the right direction.

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