Diagnosis From the Cleveland Clinic

We are back in Kansas and getting settled in.  JW had an MRI, PET scan and video EEG monitoring for 7 days.  The MRI was abnormal but that was due to the fact that he had a seizure prior to it.  There still is a possibility he may have a small amount of scar tissue, but to be sure, they would need to do a biopsy and that would be too invasive to do for how small it could be right now.  Him having the seizure right before the MRI is what is making it hard to tell, we can do another MRI in a year and if there are more changes then we would have an answer as well.    The diagnosis right now is generalized epilepsy and they based this off of the electrical activity shown on his EEG.  He does have complex partial seizures (generally classified as focal epilepsy) and tonic clonics (generally classified as generalized epilepsy  so this is not a definite diagnosis.  The activity showed up all over his brain, meaning that the seizures could start at an given point the brain and with his history, they can stay in that area or move all over the brain.  Since he didn't have a seizure, they do not have the information to confirm where the seizures start and spread to.  This is beyond everyone's control and we can't have him produce a seizure when we need it.  We agreed to treat him with the current diagnosis and that meant changing his medicine to Keppra which is used for generalized epilepsy.  The Tripletpal is generally used for focal epilepsy and that is what could have been causing his seizures to increase.  We are going to give this a try and if his seizures do not get better, then we would go back for another EEG study.  That is an important piece of information they need.  Unfortunately, we can't keep him in the hospital long enough to catch one right now and we don't want to.  So if they get to be a frequency of 1 per week again, then we would go back and see what changes need to be made.   We still need to use a neurologist locally as they feel the distance is too great to treat on a regular basis.  They will however work with whomever we choose and pass this information and plan along to them to follow.  So our next step is to find a neurologist (again) close by that is willing to work with Cleveland.  We are also still waiting on the genetic testing results that we did before going.  The results would not be a game changer on diagnosis, but could narrow the gap of finding the type of epilepsy he has.  The treatment would still be the same as long as it was working.  We do not have to restrict him from anything specific, just take caution with certain activities and an extra close eye while swimming.  Joe and I feel very grateful that we were able to take JW to the Cleveland Clinic.   We feel that we are in a much better place and our intuition was right, he was not being treated correctly.  We are on the right track and narrowing the gap of  all the possible types and treatments.  We could not have made the trip without the generous donations made by our friends and family.  Thank you all so much for your support!