Saturday, March 3, 2012
When you are given a tremendous amount of information you often just have to let it sink in.
When you are given this information as the basic pieces you need to know now, then told you need to come in for a sit down discussion, the saturation of information is just different.
I can't say it is really good news, or that it is bad news, or that the news gives us more knowledge than we had before. However, Cole was given a probable diagnosis, not just a "well it could be this", an actual disorder they are going to treat him for. Like his g.i. issues, the overall diagnosis cannot come until a particular progression or pattern is noted throughout tests over a length of time, which, we just have not reached at this point.
Between our immunologist here and the expert in Cincinnati, the belief is that Cole just has nk cell dysfunction, which can be an actual diagnosis when no other underlying cause can be found. Since g.i. also believes he may have Crohn's Disease, they have been examining links between the two. While there are not many direct correlations, there are links with nk cell function and autoimmune disorders, so at this point, when looking at the whole picture and other levels of function within his blood, this is their thought at this time. They will continue to run routine blood tests to monitor various functions over time paying close attention to any changes. In addition, when Cole weans they will be watching what happens very closely. Because Cole is still nursing, he may have a boost in his immunity at this point, which may partially attribute to the lack of serious infections to this point.
Initially I was thrilled, but this still comes with quite a bit to take in.
Basically, the way I understand it, nk cells are a first line of our immune system's defense against different organisms. Cole's just do not fight these invaders. Viruses are the worst organisms Cole could encounter and could be devastating. Even viruses within vaccinations are dangerous, which leads to a catch-22 because kids like Cole desperately need to be vaccinated, but any live vaccination poses risks beyond what healthy kids face. Before any future healthy kids visits or any vaccines, we will be presented with risk versus benefit ratios in order to make informed choices for Cole's choices.
In the meantime, until we are given the course of treatment and other options for Cole at this upcoming appointment, we were given a set of warnings and precautions, not all that different from what we had before, but with tremendous seriousness and urgency in how to proceed. Basically any cough, rash, vomiting or even second hand chicken pox exposure could create a downward spiral for Cole. We are to continue our minimal exposure to large groups for now until our appointment where once again our physician says she will address how we progress from here, treatment, and contacts, especially with other kids. I am rather curious what she is going to say at this point.
Our next few weeks are the information rich parts of our road, we have many appointments with specialists to follow up on recent tests and procedures. Even though we now seem to get multiple phone calls during the week from these doctors to check on Cole, I really like the face to face conversations. I've learned just as much from their explanations and answers to our questions as I have from their body language, and I'm a bit anxious to see and hear what they will share.