Today we met with our neurologist here in Spokane and I left his office feeling good for a change!
Let me first tell you this - when we came home from Seattle I called his office to schedule an appointment and they said that he couldn’t see us for 6 weeks because of his busy schedule. That didn’t fly with me (being the pushy mom I am) so I asked to talk to one of the nurses, who then spoke with Dr. Reggin, who got us in within a couple of weeks. See – more advocacy paying off!
The purpose of the appointment was to discuss taking a more aggressive stand against Jackson’s seizures. To me, I thought it would mean that we would be discussing and adding some medications to Jackson’s regime. In fact, Dr. Reggin did increase the dosage of the medication Jackson is on currently. We will see how that goes in the next couple of weeks and if there are any changes. If it doesn’t help, then we will be adding a different medication. But what I wasn’t expecting was that we got a plan, a plan that I am very happy about. After reading the notes that Dr. Dobyn’s (the doctor we saw in Seattle) sent him, Dr. Reggin wants to not just treat the seizures with medication, but he wants to figure out why the seizures are happening. There has always been that question of why there is seizure activity on the left side of Jackson’s brain. The left side is the “good” side according to the MRI. Just as Dr. Dobyn’s was perplexed so has Dr. Reggin been. The plan is that Dr. Reggin is going to pull all the EEG information and his notes and records and send them to the Epilepsy Center at Seattle Children’s. He will then conference with the doctors at the Epilepsy Center and try to figure out why the seizures are happening and what we should be doing to solve that mystery. Finally some progress and a feeling of getting some answers! The process of doing all this will take 4-6 weeks so we should hear either right before or after Christmas what the doctors discussed and came up with. I can handle that. Dr. Reggin explained a couple of different tests that we may have done over in Seattle that would give us a better picture of what is happening in Jackson’s brain. Which I would like to see done, the more knowledge we have the better. He also mentioned a surgical procedure that Dr. Dobyn’s also said might help that would entail separating the two side of the brain from each other. That procedure is called a corpus callostomy. I have actually read some medical studies about this procedure and there has been some success in stopping the seizures. Nothing is 100% guarantee and there are always side effects but it is something that may be in Jackson’s future. The idea of brain surgery scares the crap out of me and makes me sick to my stomach just thinking about it. But I also have to think of Jackson and what is best for him. If brain surgery would give him a better chance, Momma’s going to have to suck it up. So there you have it. We have a plan, we have some good doctors on our side, and I feel that we are finally moving forward on really getting Jackson some help. I didn’t really realize until today that I had had this feeling of just kind of being in limbo. I’ve been watching Jackson have seizures now for 17 months. All this time we have just been giving medicine, changing medicine, giving more medicine and hoping for the best. Now we are going somewhere and I feel excited and happy that we are moving. I know I have to keep in mind that after all these tests and doctor visits, in the end we just may not be able to do anything to get rid of his seizures. That would suck but I would at least know we gave it our all. Up until now I don’t think we have been and as a mom that bothers me. I feel like we should have done every test in the world the first day Jackson had a seizure. It’s a process though. I understand that. Jackson may have a lot of hospital and doctors appointments in the months ahead and even though he may not understand it (or like it), someday I hope I will be able to explain it to him and he will know we gave it our all for him.
On a side note, yesterday at therapy Jackson’s speech therapist was showing Jackson a book about dogs. She pointed to a dog and said “dog”. Jackson then said “dog”. At least it sounded just like it. His OT was there and heard it too. Maybe it was just a fluke but I really think he said dog. I told Kevin about it when he got home and he kept trying to get Jackson to say it again, which he never did. Wishful thinking maybe, but whatever it was it was music to my ears.