Sunday, December 21, 2008

Answers

We are finally getting some answers about Joshua - nearly 11 months after his first seizure. It isn't what we had hoped for, but at least we are learning more about what is going on. I talked to Joshua's neurologist Friday afternoon, and she told me that his MRI was abnormal as well. He has what is called a neuronal migration disorder. Basically, during pregnancy, some of the neurons in the outer layer of his brain did not make it to the correct place while the brain was developing. This is a birth defect & it has been linked to about 25 different genetic disorders. At this point, we don't know which disorder Joshua may have. The neurologist said it "could" be linked to a genetic disorder, which made me think it may not be; but, the few things we have read said that this is always genetic. We really don't know much about this at this point. The neurologist told me that there are areas on both sides of the outer layer of his brain that are a little bit thicker than normal, and there is a place on the back of his brain where some of the brain is protruding into the outer layer a little bit (I think...it is a little confusing). She said that the seizures would be originating in one or more of these areas. From what we have read, seizures & developmental delays are common with these disorders. I think the doctors will try to narrow down which disorders they think Joshua may have & then do blood work to test for those. It will probably take 6 weeks or more to get those results, and we don't even go to see the neurologist until next month (we are going to see a different neurologist who specializes in seizures....this appointment was made before we got all of these results). There could be other things that we will have do to deal with, depending on which (if any) of these genetic disorders he has. The most likely would be some learning problems. Right now, we won't be doing anything different with him. The main goal at this point is to get the seizures under control. He is still having one or more seizures every 1-3 weeks. We will continue with the current medication and if it doesn't start working, he will be changed to another medication. We will continue with the therapy he is already in to address the speech delay. Please continue to pray that the seizures will be controlled soon. That is definitely the biggest cause of stress in our lives right now. We feel like the other issues would be much more manageable if we weren't constantly worried about him having a seizure. You can also pray for John & I to have wisdom as we learn more about what is going on & how we can best help Joshua to be successful & overcome as many of the challenges ahead as possible. We have been so blessed to live in an area where there are so many excellent doctors and resources for him. We know that the road ahead will have challenges, but we know that God will continue to prepare us for each step.

1 comment:

Unknown said...

Thanks for letting us know. I know waiting must be terrible. I will pray for all of you.