I think I should just move here. We are staying at least another few days. We met with Dr Putnam this morning. A lot of the blood work is not back yet. The biopsies came back pretty good. There is erosion in his duodenum. The good news is that it is Non-eosinophilic. Dr Putnam is pretty sure it is because we took Alex off reflux meds. So the first order of business is to get him back on reflux meds. He can keep his 3 foods and he is tolerating the formula so that was all very good news. Dr. Putnam is concerned about the other symptoms we are seeing. Mainly the severe constipation, fatigue, muscle weakness and hypoglycemia. He is still thinking it could be a mitochindrial disorder. He wants us to meet with a neurologist to see if there is any other testing that should be done before we do the muscle biopsy. They were able to get us an appt on Friday. At that point we will determine if/when to do the muscle biopsy or other testing. Dr. Putnam has decided that everything we are seeing is definitely related, but he doesn't think that Alex's primary problem is the eosinophilic disorder. He thinks his digestive problems are secondary to whatever else is going on. He does want us to hold off on food trials for right now. he will give us the green light to trial foods once we figure out what else is going on.
Dad, Alex and I are going to the aquarium tomorrow. We will go to a big buffet for Thanksgiving and then have our appt on Friday. At that point we will find out if we need to stay into next week or come home. Alex and I are so glad to have Dad with us and Dad is loving getting all of Alex's attention. I will continue to update as I know more.
Thanks for all of your prayers and good thoughts. We love you all.