Results

As promised, I am finally getting a chance to get on here and update on what happened with our visit to Dr. Davis last week. We found out the results of two tests that we had sent off, a Genova stool study and a Genova nutrition evaluation. Both offered a lot of information- not necessarily good or bad news, just more information as to what is going on with Landon's body.

I'll start off with the results of the stool study. As expected, it showed severe dysbosis. Dysbosis is an overgrowth of bad bacteria and lack or absence of good bacteria within the digestive tract. Even while Landon was on the Flagyl, he still had a severe overgrowth of bad bacteria, and not enough good bacteria (flora) within his intestines to measure. All of that was the news that we were expecting, as Dr. Davis had already been treating Landon with a heavy dose of probiotics and many different herbal supplements for several months now. The news that we weren't necessarily expecting- although also not terribly surprising- was that the stool study also showed a severe overgrowth of several different types of fungus. So now we have added yet another herbal supplement to help eliminate the fungal growth, and if we don't see results within a couple of months she recommends that we do a round of oral Nystatin.

Now on the the nutrition evaluation... it was a train wreck! Landon showed deficiencies across the board of vitamins, minerals, and fats. And since these are things that we know for sure that he is consuming sufficient amounts in his diet, it means that he has malabsorption. The most relevant areas that came up were B vitamins and fats. Dr. Davis prescribed a very high dose of high quality B vitamins and increased his dose of cod liver oil.

Last but not least, was another surprise. We have been battling a strange rash all over Landon's back and stomach for a couple of months. When I brought him in to the doctor they diagnosed him with contact dermatitis and prescribed steroid ointment. The cream cleared it up, but after a few weeks it came back. Once again we applied the ointment and it cleared up, but it kept coming back. We couldn't figure out what was causing this. The usual instigators- laundry determent, fabric softeners, bath products- were out of the question because we already don't use products containing chemicals/dyes/perfumes. After we returned from Myrtle Beach he had the worst outbreak yet. I showed it to Dr. Davis and she was confident that it is eczema. She said that often it can be a reaction to wheat or dairy. The mystery was instantly solved. Although Landon doesn't consume wheat or dairy on a daily or even weekly basis, I am guilty of giving him small bites of these things occasionally. While we were in Myrtle Beach our whole family ate terribly, including Landon. Although I'm not sure yet if it is dairy or wheat that is triggering the reaction, now that we have completely eliminated both things again the eczema has cleared up. 

That sums up our visit with Dr. Davis. Otherwise, everything is still going well. We got our situation with our insurance company resolved so that we can affordibly get the Rifaximin. We actually only have to pay a $40 co-pay for a 10 day supply, which is the same that we were paying for the Flagyl. The only difference is that the Flagyl only costs $40, and so our insurance company was not having to pay a penny. Now, they are having to pay over $800 for their part of a 10 day supply, so $2400 a month. I expect that it will only be a matter of time before they try to deny coverage or force him to move to a different antibiotic although it is working so well. So hopefully next time we try to take him off antibiotics in August it will finally be successful.

As some already know, Landon is having his first birthday next Sunday! It is such a miracle that he is still here after all that he has been through and gets to celebrate something that so many people take for granted every year. He is really doing well with some things- like crawling, pulling up on furniture, waving hi/bye, understanding basic language, and finally babbling and starting to try to say words. Other areas are not so great. His low muscle tone is becoming more of an issue again. He can't stand on his own or cruise on furniture without his legs giving out on him. He is also having a lot of trouble with eating. He gags and chokes on everything that is not completely pureed. We will be bringing both of those issues up at his next appointment coming up, but I'd imagine we will be contacting Early Intervention again to re-evaluate and possibly start back up therapy. We will also be going for his one-year follow-up with neurology soon, but their office is so backed up with appointments that weren't able to get in until the middle of August.

I hope everyone is having as good of a summer as we are so far! Landon is such a little fish and loves to swim already. I've enjoyed the first month of staying home with the boys so much already and can't wait for the next two months!

Start of a Great Summer

Hi everyone. I apologize for the lack of updates, things have been chaotic around here! We just returned from our first vacation as a family of 5. Landon had so much fun seeing the ocean for the first time and crawling in the sand. We managed to bring all of his irrigation supplies, supplements, and medications and stayed on track with everything the whole week we were gone. I will write a longer update later this week to update on the new medication he started and what we find out at a follow-up visit with Dr. Davis on Wednesday. Meanwhile, I will post some cute pictures of Landon enjoying the beach.