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Today we had an appointment with Keandre's GI doctor and a nutritionist at the children's hospital. Our time there wasn't as helpful as I had hoped, but it never hurts to check in. Basically it comes down to this:
Keep doing what we're doing until July.
(Pretty profound, huh? ;)
His stomach hurts daily, and he still coughs and gags -- especially when he is throwing a tantrum. And we have just a few of those every day. Four-year-olds aren't particularly adept at dealing with life-altering medical conditions. Especially when they are dealing with pain and have to avoid some of their most favorite foods ever.
So....now we wait, and pray that his body continues to heal. There is not much more we can do for him until his endoscopy, aside from trying to help him cope with it all. Prayers are always appreciated.
Apparently we've started a new tradition -- taking pics with the rabbit at the hospital whenever we stop in. Kinda fun! I like the silhouettes, so I'm quite happy to oblige. :)
And now for the update.... (Did I actually write that I won't be posting about this for a while?! Ha! Wishful thinking.) On Thursday, we started Keandre on Prevacid, and quit the Zantac. Within 4 days, he was starting to feel better. It is so wonderful to see him relax sometimes and just be a kid. The doctors think he has probably been in pain most of his life (sadly, we agree), so it's like a new side of him is emerging as he starts to heal.
The Prevacid did not help him in the past, so hopefully this means we are on the right track and have removed foods that are triggers for his EGID. (Now we just need to wonder which foods, and are there more to remove???)
We also have to decide if we'll avoid the 15 new allergens that showed up on the skin prick test (SPT) right after his diagnosis, or just the Top 8. The SPT can have a lot of false positives. And if we remove too many foods, and change too many variables, it will be next to impossible to know which change(s) helped him heal.
If you are interested in learning more about the world of EGIDs, check out my friend Jenny's blog. Her post on choosing a treatment approach is here, and allergy triggers here. God has blessed her with a way with words, so I won't even bother trying to say what she has already explained perfectly. :)
Tomorrow night Jenny and I are attending a support group for parents of children with this disease. I'm excited to meet other AZ Mamas who are walking this journey also!
It is not our intent to make this 'the-blog-about-Keandre's-health-issues'. But I do want to quickly update on how he's doing, since many of you are praying and checking in regularly. Then we'll move on to other things. :)
I just got off the phone with Keandre's GI doctor. He called after hours, and was in no rush to get off the phone, so I was able to ask him lots of questions. (What a blessing!) After much research, prayer, talking with a few moms of EGID kids (we all know they are the real experts!), and this conversation with his doctor tonight, we have decided on our treatment approach until our next endoscopy.
1. Avoid all foods Keandre appears to be allergic to.
2. Continue the supplements we feel are important for his overall health: vitamin D, flax seed oil (Omega-3s, etc.), a good quality multi-vitamin, lots of probiotics, digestive enzymes w/ every meal, kombucha tea (probiotics, enzymes, etc.), a homeopathic remedy, and slippery elm (for his esophagus).
3. Feed him good quality organic foods, grass-fed beef, and bone broth soups.
4. This week we will add in a high dose of Prevacid (30 mg.) in preparation for his next endoscopy, and drop the Zantac. (Regular endoscopies after 6 - 8 weeks of Prevacid are the ONLY way to see if treatment has been effective.)
Thank you for your continued support and prayers. :)
