Sunday, May 11, 2014

Results from Endoscopy and Colonoscopy

Doc said everything from the colonoscopy scope looked normal and biopsies came back normal. However, biopsies from the endoscopy showed elevated eosinophils, which are cells that only become present during certain times - the ones in line with Keegan are allergies, adrenal suppression, eczema, and hay fever. Basically, Keegan esophagus is inflamed and irritated. 

The doctor told us that the eosinophils could be present either due to acid reflux, or an allergy issue. More likely it's an allergy issue, but the only way to know for sure is to take acid reflux meds for 2 months and re-scope. We are on the fence about both meds and re-scoping, but the doc told us if we leave it untreated, the chronic inflammation it could cause scarring of the esophagus which could lead to narrowing of the tube and even cancer. 

Our thoughts are this:
Of course Keegan has a presence of eosinophils, he's an inflamed mess right now. He feels he has a need to inhale his food - never takes the time to chew properly or eat slowly - so with his esophagus being a bit narrower due to the inflammation, he is swallowing a TON of air. This is what is causing his belly to be bloated a lot of the time, particularly toward the end of the day. 
Once his body has more time to heal, he becomes less inflamed, and his adrenals start working as they should again, his esophagus will calm down as well. 
So..... we are really on the fence about medicated for acid reflux when we REALLY don't think that's his issue. 

WE SAW A SMALL GLIMPSE OF WHAT THE FUTURE HOLDS!
Our family traveled to California on vacation in April - we currently live in Colorado. On day 4 of our 10 day vacation, we started to see MAJOR improvement in Keegan's skin. His skin was the best we had seen it since being on our topical steroid withdrawal journey. It was AMAZING! Super soft, smooth, barely flakey. He could actually walk normally without favoring his sore knees and ankles. He didn't scratch the WHOLE DAY during our 80 degree day at Disney. He didn't even complain it was hot! He swam and swam and swam in the pool / hot tub at the hotel. He played in the sand! He did not whine and complain most of the week. A different child for sure... within 2 days of being back home in Colorado, his skin reverted right back to being super itchy, cracked, sore, oozy, flakey and uncomfortable. We are connecting it to a few factors... Colorado is super dry, not humid, high elevation with less oxygen, different pollens, and we have a dog. 
A couple weeks after being home, we realized we have GOT to make a change... we saw hope in our son that we have not seen for a long time, and we feel like we are in a rut here in Colorado. We can't make a move to California right now, but are hoping in the next few years we can make it happen. My family is from Chicago - which is sea level and more humid - so we decided this would be the next logical step for us. We are moving to the Chicago area, and are also finding a new home for our dog. 
While we are sad to leave my hubby's family and our friends in Colorado, we are excited for what the future holds for us and for Keegan's health. 

As for the acid reflux meds... we decided to start them for now, but try to find a supportive doctor in the Chicago area to see what to do from here. Ideally, we'd love to find a pediatrician who is on board with TSW, who can guide us to what to do about the esophagus issue. 

Please feel free to leave comments if you have any suggestions for us! xoxo

2 comments:

  1. I'm very curious to hear how things go with Keegan and the reflux meds. I'm on month 20 of TSW and was sailing along (well, mostly, with small flares here and there) since month 4 or 5 but inhaling something at my inlaws over Christmas triggered my long dormant asthma and I think the steroid inhalers triggered my current problem. I have heavy lungs (can breathe but it feels like a weight is there and the breaths aren't as good as my usual) and my esophagus/throat is super tight. I wheeze when I try to exhale forcefully and it feels like everything around my voicebox is swollen. My doctor gave me reflux meds as well but I doubt that's the issue. Took them for 5 days and then stopped, as I am tired of medicating and creating new problems. I'll be curious to hear how Keegan does ... good luck to all of you! - Mandy

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