Making Progress

Nolan had been seizure free since Monday, but started having them again starting Thursday morning at 6:00 am.  The history of his seizures is that they usually come in clusters, so were expecting more to come.  Luckily at our doctors appointment on Thursday mid-morning Dr. Norman was able to talk us through some expectations.  She told us that the medication that Nolan was on was NOT her "go to" for his particular diagnosis.  She uses a different medication and has had much success on similar cases on stopping the seizures completely.  When Nolan was at OU they started Keppra, so that is what Nolan had been on since.  Dr. Norman has tried increasing the dose of the med as well as the frequency given.  Nolan is now on the upper end of the maximum dosage of Keppra.  If Nolan was to continue to have seizures she wanted to switch him to Trileptal.  In the meantime we would get a Keppra level to see if he might be metabolizing it quicker than expected.  Anticipating the possibility of switching his medication, his Auntie Em ordered the Tripleptal to make sure it was available on short notice if needed.  The brand name seizure medications we have learned are not the easiest to find.  Thank goodness for having a pharmacist in the family! He had another seizure that afternoon and then two more early Friday morning.  Dr. Norman was notified and the new medication was started on Friday.  We are praying and have faith that this medication is the answer to stopping his seizing.

Jeff and I have had lots of questions concerning what the seizures are doing to Nolan's body.  The first questions I asked the pediatric neurologist at OU, as well as the answers received are as follows: Are the seizures hurting Nolan? No, they may scare him but do not hurt him.  Luckily Nolan does not hold his breath during the events (Praise God).  Are the seizure events affecting his cognitive function? No, they only start to affect brain activity in a negative way if they start lasting 30-45 minutes in length (the longest one Nolan has had was about 3 min and 30 sec). Will this affect his IQ? Absolutely not.  Jeff and I are convinced that the reason Nolan is having the seizures is because he is such a genius that his brain is growing faster than normal and the neurons in his brain can't keep up and keep misfiring!

Yesterday was a bad day for Nolan.  He had multiple seizures and was worn out from all the activity.  We napped all afternoon and sweet boy just wanted to be held.  Good news..... with the new medication on board Nolan has not had a seizure since yesterday afternoon!!  We all had a good night last night and we are hoping for a good day!!  Nolan started to smile back this week which is so fun to see.  His Gran also taught him how to mimic sticking out his tongue which is his new favorite thing to do.  He loves to look at faces and see different expressions.  He is such a blessing to us.  Here is a picture we captured this week.