Will you all come along side us and keep praying for Jonah. Also please pass on this prayer request to any if your pray circles. We need as many people praying as possible.
Just an hour ago, in his sleep, Jonah had another tonic-clonic aka grand mal seizure. Although it was mild it really shook us up. We thought those ones were completely controlled.
He has also still been having these small seizures which are called atonic where he will just lose muscle tone which will cause his head to drop and maybe fall over and absent seizures where he will just stare. Both of those only last a couple seconds and are usually within a few hours of waking up
We had a second opinion with another neurologist and he had another EEG which both went very bad. We were not happy with the second opinion. The neurologist where we had the second opinion thinks he has a rare epilepsy syndrome that does not have great chances of fully controlling his seizures. On top of that what he thinks he has can cause degeneration of cognitive skills. We think there is just not enough data to make that diagnosis right now.
We are currently setting up a time where when can get a third opinion at the Mayo clinic.
Please be on your knees for our little Jonah. He needs us right now.
Thank You
Kristi
