While Kohl continues to make outstanding progress, he still has a long way to go, and only time will tell what effect all of this will have on him developmentally. First where he will be developmentally is a very difficult question to answer at this point (a) because each child is different and (b) the only tools other than observing him clinically are the EEG and initial MRI, which are both imperfect indicators of developmental progress. Only through assessments over time of whether he hits his developmental milestones during his first two years will we find out the residual effects.
Last week, I asked the pediatric neurologist what the best-case scenario for him would be developmentally. He began with the disclaimer that it is difficult to make that prediction at this stage because he could be painting too grim or too optimistic a picture.
But in his opinion, the best-case scenario (based on his initial MRI and his EEGs up to that point) was that Kohl would have moderate to severe cerebral palsy. He might be able to walk, he may be able to talk but only in fragmented sentences, he may have to receive food through a feeding tube, and he would have significant cognitive issues resulting in mental retardation.
That was not necessarily the outlook we wanted to hear, but it beat having to make a decision whether to withdraw care. We could certainly deal with that.
But there are also a few reasons to be optimistic:
- MRI potentially misleading – We have come across some literature that might suggest the initial MRI that showing severe brain damage may have been misleading. In a study that a very helpful friend pointed us to, the earliest an MRI had been done on newborns with neurological damage was four days after birth. Apparently babies have a lot of swelling and their brains change so much the first few days that an MRI done within 24 hours could have painted a somewhat inaccurate picture. So we plan to have another MRI in the next few weeks, and we hope it will show much better results.
- Improving EEG – The first EEG done probably could not have been any worse. Other than seizures, it showed virtually no activity and the “background” was flat. This was not a good sign. It improved a little bit right before they took him off constant EEG monitoring, but not by much. In subsequent EEGs, however, he has showed consistent improvement. One of the doctors suggested that his EEG would improve a little after the first few days and then plateau after that. But his EEG “background activity” continues to improve, and I think the doctors are a little surprised at how his EEG continues to improve.
- Appearance and alertness – Since being weaned off Versed, one of the medications he was taking, Kohl has been very alert and has already established a routine. He tracks people with his eyes and he has expressed his dissatisfaction with various activities like bath time and diaper changes. These are all good signs.