The last 24 hours have been filled with some really good news! Yesterday afternoon, Dr. McClellan (our endocrinologist) called to say he posted Lucas’ unique case on an endocrinologist board and asked doctors throughout the US to review & share their thoughts. Let me back track for a moment to mention last week Dr. McClellan gave us a heads up that he was starting to think Lucas’ case was more likely a genetics form of rickets rather than nutritional rickets due to C. Diff. We appreciated his honesty but hated to think he could be right which would mean Lucas would have a life long rickets issue (such a difficult form of rickets to treat). Bryan jokingly told Dr. McClellan “well, I hope we find out you’re wrong”. Dr. McClellan said “I hope I’m wrong too”.
Yesterday, Dr. McClellan personally called us to say Dr. Michael Levine from Children’s Hospital of Philadelphia (CHOP) who is one of the most highly respected endocrinologist for unique rickets cases posted a response. Dr. Levine believes Lucas’ case is indeed unique and confusing. But he feels strongly that Lucas has nutritional rickets, not a form of genetics rickets. Praise the Lord! He believes the medicine and game plan that Dr. McClellan has Lucas on was perfect. The only change was to have blood work & urine testing reduced from every 3 weeks to every 4 weeks. Plus, he recommends a new set of knee xrays at the beginning of August. He believes we may be able to see some type of improvement in the rickets by August. Both Bryan & I cried during the call from the good news!!!
Then, this morning we spoke with Dr. Bartlett’s staff at Mayo Clinic Children’s Hospital in Rochester, MN. We received the awesome news that Dr. Bartlett approved for us to move forward with the fecal transplant which has a 90% chance of eliminating Lucas’ C. Diff infection which in turn is causing his nutritional rickets. For now, I have been chosen as the stool donor. So today, I had my blood drawn and dropped off stool samples for testing. The results should be back by next Friday. If I pass, then in another week or two we will be flying to Rochester, MN for Lucas to have a fecal stool transplant. It is very similar to a colonoscopy except after they clean out Lucas’ colon, then they will put my stool into his colon to give him my positive fighting bacteria which should kill all of the C. Diff. From our research, it appears there are only 3 doctors in the US who perform the fecal transplant on children as young as 12 months old like Lucas. We feel so blessed to have found Dr. Bartlett and to have been approved into his Fecal Microbiota Transplant Program. Wish us luck!
If all works out as planned, we will travel to Rochester before we travel to Boston for the big surgery. This will be a very busy and life changing summer for Lucas!