Since the last post, I am happy to report that Charlie has been doing much better and for the time being her condition seems to be managed. We went and had a follow up appointment with her motility specialist at Children's Hospital right before the holidays. We were so pleased to find out that not only is she putting on weight but she is also growing! She seems happy, healthy, she is eating much more than she was, and is in good spirits.
When we met with her doctor we talked about where we go from here. One of our biggest questions was about chronic pain. Our concern is that she appears to be INCREDIBLY tough. Not just your normal tough kid, but to the point where she will actually be injured and won't even flinch. Although it is nice on one hand to not have the dramatics, I would like to be able to know that she is "feeling" the pain. I worry that we are not treating her condition appropriately because she can not yet describe to us what she is feeling. If she has been in chronic pain since birth is that all she knows, and therefore has learned to manage it and go through life happily, yet "in pain." Although it appears to not bother her is that only because she is used to the sensation? Could we do something about it and relieve that?
Although we won't know what she is feeling until she is old enough to describe it to us we can only go based on what we can deduce from her behaviors and actions. The doctor described that children such as Charlie do in fact have a much higher tolerance for pain. Having this chronic pain in a sense becomes a normalized sensation, which raises what she can tolerate. What would hurt another is no worse to her than what she feels constantly. We therefore need to teach her to clean wounds, recognize an injury and to stay safe, etc. for the time being.
We also discussed at what point we continue testing on her colon. At this point, while she is managed on the heavy duty laxatives we will not need to go there. When those no longer are effective we will then need to go to that next step, which again includes incredibly invasive testing which would result in surgical procedures. Hopefully, that is a long way off.
Just this past week we went to her pediatrician for her two year check and he said one of the most interesting things. We began seeing Dr. M (also her GI) when we began with all of this. He has always seemed calm and not overly alarmist, although he did mention on numerous occasions that he has never had a case like this. When he was examining her we discussed the course of action that the motility specialist at CHLA was taking, her current medications, next steps, etc. When we were discussing making the decision to still hold off on starting the next set of medications he agreed that for now that was the right decision. He explained this by saying, "If you had asked me several months ago it would have been a no brainer. She was REALLY SICK and we needed to do something. She would have had to have been medicated further. She is well managed now, growing, and appears happy. Why mess with it?"
And so, that is where we are. We will have regular appointments with all of her doctors and cross our fingers we can keep her stabilized for as long as possible....NOW, time to deal with the issues our other one is having!
