So we started out on the road at 7:00 am. Headed to downtown LA to get Gideon’s birth certificate. Since he was an out of hospital birth and in LA county (santa clarita) we had to go there to get it and it had been scheduled for two months. Got in and out pretty quick. Then we headed to Tarzana for our appt with Dr. Angela Morrison the pediatric neurologist. We made it there at 10:00 am (so thank you all who prayed for quick driving, little traffic etc…) We grabbed a bite to eat and went to our 11:00 appt. (first one of the day). She didn’t show up until 11:30. We were in with her until 1:00. She looked over all the records that I brought to her. I had made her a copy of everything and brought her the disc of his CT scan.
We really liked her! Much more personable. Answered our questions and was super nice and seems to know what she is doing. She does like the fact that his seizures did happen on both sides of the brain. She said the CT scan looked good. The MRI has to be done just to be sure there isn’t something that was missed. However, she believes that will show up fine as well.
Since Gideon does have a rash all over she called Dr. Gold and we had to go see him right away to rule out that the valproic acid wasn’t causing the rash. She does not like the fact that he’s on that medication. She likes the keppra better because there are way less side effects. She told us that Valproic acid (depokeen) would be her 4th or 5th drug to try if others didn’t work. She gave us a sheet of side effects and it was more like a packet for that drug.
What she’d like to do is wean him off valproic acid and up the dose of keppra.
We traveled over to Camarillo to see Dr. Gold. He saw us right away (that was nice). He believes that most of Gideon’s rash on the back and face is more of a eczema type thing (which was my guess, because I know he has very sensitive skin). On him tummy is a little bit of a different rash. So he sent us across the street to the lab to get a blood test. He wanted to test to check his liver etc..
Now we wait to hear back from the dr. If the rash is due to the valproic. They will want to stop it right away. This could cause more seizures. If its not, then they will wean him off and up the Keprra dose.
Most likely he will be on meds for 1-2 years. The goal is to find the right dose so he has no seizures, and still acts like our Gideon! So its a lot of trying and waiting and watching. We did ask about vaccines and she does not think that those caused this. We asked about the ketogenic diet and they do use that in some cases when things don’t work out. For Gideon, I’d have to stop nursing and she thinks nursing is best.
We are told that his seizures won’t harm him!! If they last more than 5 mins (I can’t even imagine watching him for 5 mins) then we are to get him to the hospital. This is where it gets tricky. She works in Tarzana hospital. If we call 911 they aren’t gonna take us there. They will take us to Santa Paula or Ventura. So, we have to discuss what we will do. Hopefully we won’t have to think about this but we need to be prepared.
First of all, I'm so thankful the day went smoothly as far as traffic, etc. Prayed for you all day!
Very thankful too for Dr. Morrison…she seems great and I'm very glad you like her and are comfortable with her. Bet you wish she was closer!
You are right in that the key is to find the right med and the right dosage for him. Things might be tricky till then, but hang in there. I'm glad to hear that Dr. Morrison said the seizures won't harm him. That's what I was wondering …many times whatever WE might find scary or cause for concern, are actually things that might need to just run their course. Hard to know that though! Especially when it's your dear child. 🙂
We will see what the coming days, weeks and months hold. You are so right about being prepared and having a plan now. That's an important part of feeling less helpless and more relaxed. And that will help you move on with your day-to-day lives, while you enjoy your children. 🙂
Love you, MOM