Friday Update

I talked with the doctor today and got some updates. The first is that it is definitive now that Coleman has toxic mold illness. Coleman's MMP9 level (used as a marker) is the highest the doc has ever seen in a child. Coleman also has the dreaded rare genotype that makes him much more susceptible to mold illness (probably got that from yours truly) and he has clearly had exposure.

He had not tested for Lyme's disease, but based on the story I told him about Coleman's tick bite that stayed inflamed for two years on the back of his head, he decided to test for Lymes with the remaining blood samples he has on hand.

In short, his inflammatory findings are significant and typical of someone with a mold illness, it's the behavioral issues that are not. I talked with the doctor about another mother I have been communicating with that has several children with identical and even more severe behavior. He agrees that its a possibility, just not something he has seen. As a result of this, I am now tracking down other docs on the west coast that have apparently dealt with this.

We also talked about the stomach problems that both boys have. He said that gastroparesis can be a common condition with mold patients and we should consider the four hour test for that. Not many doctors understand just how traumatizing it is to attempt to take Coleman anywhere, but we do understand there are places he needs to go. We are hoping that a few more days on the pain meds may get him to a physical and mental place of better mobility. One thought is to have Spencer take this test since his stomach is his greatest symptom now. We will talk to the docs about that next.

The toxin binding medication that Coleman is already on is the single key to the first step in removing the toxins. We had started Spen on those meds but have to finalize his appointment and be seen in Maryland to get more. We are in the process of doing his paperwork and then Spen and I will go to Maryland for blood and nasal swab testing as well.

I also talked with a pulmonologist in Cleveland today who was aware of the results of Coleman's bronchoscopy that showed iron in the lungs. At some point, he has probably had bleeding in the lungs, but the results of the culture are not so high. I have also talked with two pulmonologists in Richmond about this. Certainly his pulmonary function is an issue, we just have to determine which catastrophic issue we tackle first...

We basically have a three pronged doc team here in Richmond that will help guide our next steps. The question I discussed with the doctor today is whether or not we might be dealing with a second situation along with the mold OR if these guys have the worst case he has seen.

I had to really process some of this information today. In some ways I wanted to know more, but in other ways, we have some clinically solid answers. Now the trick is to get the separate systemic issues dealt with in the proper order and to get Coleman feeling even the least bit better so that we can begin to move through some more appointments.