Hi everyone! First of all I would like to apologize for the lack of updates. Our oldest two boys have started gymnastics and one of them has also started t-ball and so things have been busy lately. Since my last update we finished the 3 month course of maintenance Flagyl and tried to take Landon off of it again. Unfortunately, it was not successful. I reluctantly called Cincinnati, knowing that they would want to put him back on another long course of Flagyl. I explained that although I understand that this is necessary in order to keep Landon alive, at the same time I'm uncomfortable with the damage that it is causing. Flagyl is known to cause neuropathy with long-term use and is also anticipated to be a known carcinogen. Landon has already been on it for 8 months total which is longer than I would have liked.
To my surprise, they actually had an alternative available. Dr. Levitt prescribed a new antibiotic called Rifaximin. Rifaximin is a broad-spectrum antibiotic that is not absorbed into the blood stream, meaning that it only affects the intestines- the location of the problem. It is a much safer drug for long-term use with no known adverse effects. So like myself, you are probably wondering why this drug isn't using more commonly as an alternative to the Flagyl. The answer: cost. I just spent over $800 for a 3 month supply of this medication. Just like any other situation we have encountered, our insurance does not want to cover it because like the Flagyl, it is compounded. Cincinnati is currently working to get them to authorize it so I can be partially reimbursed for the cost, but it is still up in the air. So unfortunately, this 3 month course could be the only course that we are able to afford if our insurance won't cover the cost.
We are still using all of our natural supplements and will be returning to St. Louis soon to find out the results of the stool study that was done. We will also possibly be returning to Cincinnati in another few months depending on the results of an abdominal x-ray that will be scheduled. Dr. Levitt has mentioned doing some more invasive testing to try to find the source of the issues that Landon is having, including a colonoscopy. I just wish that we could find an answer as to why he is having chronic infections to the extent that he is. Even Dr. Levitt, who sees the most complicated cases of Hirschsprung's disease in the world, is beginning to sound a little less confident.
