Yesterday was a long day for Super D, and us for that matter. We had an appointment to have an MRI done. The last one we had done was over a year ago. It seems this is something we end up doing every couple years. They never find anything new, which is a good thing.
This time we had it done in another attempt to rule everything out. At the end of the month we are having another EEG done in this search for answers. I doubt either one will be helpful.
The MRI is not as easy as it is for an adult. We can lay still. For Daniel, the procedure requires he be sedated. A 45 minute MRI turned into a four hour event, not counting the drive time to Topeka.
So why put him through this?
Because we are running out of options. We need to add a new medicine, but we need to make sure we have the latest and greatest information available.
His seizures have been getting worse again. He has had several big seizures each day for the last few days. Yesterday was one of the worst we have seen. The number of seizures was not as great as some days. It was the severity of the seizures today. He stopped breathing during one in the hospital, long enough for his face to turn blue. It was bad enough the nurse needed to give him some oxygen.
Something is going on in his brain. We desperately need to find out what. It may be the natural cycle he seems to be on, but these have been worse than any we have seen in the past. Nothing about epilepsy makes sense, but it is worse for Super D. He does not fit into any known category. The doctors do not know what to do with him. Hopefully these tests will shine a little light on the situation.
In the end I will not be surprised if we spend several grand to be told exactly what we already know. But, we will spend the money if there is even a slight chance we can find something new that might help treat him.
If only my anguish could be weighed and all my misery be placed on the scales! It would surely outweigh the sand of the seas… – Job 6:2-3
Life With Super D! 