The emotional roller coaster continues. We don't really have any answers yet, but I did speak with Dominic's neurologist on Monday and his opinion of what is going on is a little different than the neurologist's we saw on Saturday. There is still a good possibility that Dominic had an Ischemic stroke, based on the MRI results. However, Dr. Arndt believes that if Dominic sustained the amount of damage visible on the MRI, he would be in a coma or have no use of his arms and legs. The location and amount of damage would be devastating. Therefore, he would be getting worse, not better, which is the case. His OT actually thought he was doing awesome! She uses this foam block to help him work on lifting his head and he held it up for 5 minutes. So, clinically, he doesn't seem to have any symptoms of the type of stroke he appears to have had. But, not to say it couldn't be the case. Stranger things have happened. But he also brought up a study that was being done at UCLA when he was there regarding Vigabatrin. Not much has been published on it yet as Vigabatrin is still a new drug and research is still being done. However, when he was at UCLA, he had 25 patients that were on Vigabatrin (the anti-spasm med Dominic has been on since November) that had very similar MRI findings. So, there is a possibility that rather than Dominic having brain damage, rather that he has swelling in his brain caused by the Vigabatrin, that could potentially be reversible. The only way to know for sure is if we take him off the Vigabatrin and do another MRI in a few weeks to see if anything has changed. This is the best case scenario - or as his pediatrician said yesterday, "the only good scenario". It's a little scary taking him off the Vigabatrin because there is the possibility the spasms would come back, then we'd be back at square one. But I guess it's better to know if he truly had a stroke or not.
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Metabolic disorders and Mitochondrial diseases are still very good possibilities, so we are repeating all metabolic tests that will include Dominic needed another lumbar puncture (spinal tap) and Dr. Arndt is referring us to one of the top Metabolic specialists in the country at U of M. Dominic also started the vitamin therapies yesterday (in the picture below, you would think that's baby food on his face. Nope. It's his meds. More got on his face than in his mouth, and it stains).
So, for the time being we are in a state of waiting, yet again. We are exploring all of the possibilities and Dr. Arndt, along with the rest of the neurologists in his practice, are sitting down with the hospital radiologists on Friday to review ALL of Dominic's scans (CT's, MRI's, and ultrasounds) to try and see if they can put their heads together and make sense of everything. He seems to be somewhat of an anomaly at this point.
We are heading to Detroit on Monday to consult with Dr. Chugani. I feel very blessed to be seeing the top-ranked "go-to" pediatric neurologist in the country. I'll be interested to see what his take is on everything. Until then, we wait. Wait and pray.
