"Benign Occipital Epilepsy"

I know I have been a terrible blogger, I can't believe its been so long since I have posted. But we have had a pretty busy/rough few months. After alot of sleepless nights and wonderful doctors and tests. We finally have a diagnosis for Nate.... I never posted about this when it happened but....

A few weeks ago we went to my nephew Conner's 1st Birthday party. It was on Sunday afternoon and it was really hot but a beautiful day and Micky and Amy decided to have it outside so that all of the kids could just play and have fun. We got there and Nate started to play with all of the other kids. He played for about an hour and I noticed he was sitting on the golf cart with his Uncle Mick Mick. They were talking and I thought everything was fine. And before I knew it..... Nate was standing beside me saying that he didn't feel so well. He said, "My tummy hurts, I think I am going to be sick." My Mom asked him if his head hurt and he said "Yes really bad" (His migraines hit him all at once. No warning he goes from not having a headache at all to a full blown make him throw up Migraine) Then my mom said "Jana look at that baby, get him." He was turning really pale. Then before I could get to him, he fell over onto my Moms lap and I thought he was throwing up so I ran around to him and his eyes were rolled back into his head and he was BLUE. I scooped him up and started screaming for Amy (she's an RN) He went as limp as a dishrag and I almost dropped him. Micky ran to get him from me and he got REALLY REALLY STIFF. We ran in the house where Amy was and she said, "Lay him down he's having a seizure." He laid there just staring for a few minutes and he finally started to talk to us. He couldn't raise his arms or legs he could just talk. He was SO tired and wanted to go to sleep so I carried him to the tub to cool him off and he still couldn't walk and was still SO pale no color what so ever his lips were so white. I was SO scared. We went to the ER and after we were there for about 30 minutes he finally started getting his color back. They had no answers for us. They just said watch him and if it happens again call 911. Which wasn't good enough. I put him between Matt and me and I watched him all night. I think I got maybe 2 hours of sleep. Monday morning we were at Dr Dabbs office first thing because I wanted answers.. He checked him over really good and said that we need to go to Children's Hospital for test. So we did.....
They did an EEG and we got the results yesterday. He has Benign Occipital Epilepsy. It is in the back lower part of his brain. The epilepsy causes him to have migraines because of where its at. And the migraines causes him to have seizures. He said that its like the Migraine and the Epilepsy are butting heads constantly. He said that on a scale of 1 to 10 Nate's migraines are a 15....completely off the chart. During the EEG, Nate had 3 seizures. 90% of his seizures happen while he is sleeping. And they cause hallucinations. (Which explains ALOT) He woke up last night screaming for me to come and help him because there were snakes everywhere in the house. And I keep telling him No baby there are no snakes and after about 15 minutes he started to calm down. I could not tell you how many times he has woke me up because he has seen things. I thought he was dreaming but now we know he was having seizures and he really thinks these things are real. I have also noticed that some nights he would go to bed early and sleep really late, and still lay around the rest of the day. I thought it was because he was just tired. Dr. Dabbs said that it was probably because he had seized most of the night and his body was just so drained. We go back to Children's Hospital next week for a MRI. They just want to be 100% sure that there is nothing else back there causing him to seize. He starts taking Topamax 25 mg tomorrow night. He will take that for 2 weeks and then they will increase it to 50 mg a day. Which is really scary because Matt takes 50 mg a day. He's 28 and Nate's only 6. The neurologist at Children's said that he has never prescribed it to anyone as young as Nate and it has not even been approved by the FDA for children. But Nate needs it because it treats the migraine and the epilepsy. He said, "We will be trying to kill two birds with one stone, so to speak." He will take this for 2 months and then we will go back to Children's for another EEG to determine whether or not the Topamax is controlling the seizures. While on this medicine, they don't want him to get too hot because it could cause a Heat Stroke. Nate has always been one to play outside from dawn to dusk but since the seizure at Micky's house, he has been scared to go outside and play. He goes out for about 15 to 20 minutes at a time and comes inside to lay down. Thank the Good Lord above he hasn't had another "awake seizure" as he calls it.
I feel so bad, because after reading about all of the symptoms and side effects of BOE, I now understand a lot of the different things I have noticed about Nate.
Please keep him in your prayers. Pray that the meds will do what the Doctors want them to do. And pray that Matt and I will be the parents that Nate needs us to be. And that we will make the best decisions for him.

"I can do all things through Christ which strengthens me" Phil. 4:13