It has been a LONG four weeks, but here we are at the Cleveland Clinic. After being at Kosair for two weeks and still no improvement Dr. Puri referred us here. Sadie has been through a lot, but she's hanging in there and finally, her seizures have decreased. She has gone from 20 or more seizures a day to 3 or4. So things are getting better. But from Sept. 25th until now has been a very long, hard, emotional, and stressful experience. I know I haven't been very good through this time about keeping everyone up to date, but it has been a heart-wrenching experience for me and very difficult for me to talk about because there are so many unanswered questions. But that's why we are here. The Cleveland Clinic is suppose to be one of the best children's hospitals in the WORLD! There are children from ALL OVER who come here to get treatment. So far, we feel confident in Sadie's treatment here and we feel very positive. Since we have been here ( Sat. Oct. 20th) Sadie has been on 24hour EEG and video monitoring. They too are trying different med.s, just like Kosair did, but they are giving them more time and trying them much slower and not changing so quickly. They did a special test called SPEC which basically tells them where the seizures are starting in the brain, and they also did an MRI. All of these tests and scans are suppose to be going to the brain surgery team on Monday to decide if Sadie is a candidate for brain surgery. The pediatric neurologist here said according to Sadie's EEG she doesn't think Sadie will be a candidate, but she hadn't seen her MRI or SPEC test yet. She said that on Tuesday (Oct30th) she will meet with us to tell us what the surgery team has decided and based on their decision we will talk about Sadie's plan for the future. The GREAT news is that they are giving her a medication called Phenabarbitol and seems to be helping a lot. The not so good news is Sadie is on such a high dose of it that she is really "drugged" acting. So hopefully we can find the right dose that continues to help Sadie but also allows her to be a 14 month old. We still don't know why Sadie is having seizures, so far all of the labs that have come back have been normal. We are still waiting on several more labs to return in the next week or two. All the doctors have said that more often than not, they never find a reason for a persons seizures, that's the mystery of epilepsy-we just don't know enough about the brain. So, if we can find the cause then great, we can hopefully treat it successfully, but if we can't find a cause then we just have to be willing to try all the options out there so that's what we are in the process of doing. I want each and everyone of you to know that I thank you for all of your cares, concerns, prayers, cards, gifts, listening ears, helping hands, and loving hearts. It has helped us so much through this extremely tough time. When I think of all the peolple who have helped us so many faces come to my mind and my words alone are not enough to show my gratitude and appreciation. So as best as I can here on our blog, THANK YOU! ( I'll keep you posted)
