Feb 29, 2012 - 2:15 am
Even with a lot of focal seizures, still.....David is doing better. We went to the surgeon yesterday for his second and final checkup to see how his wound from the abscess surgery is healing. The dr was so pleased with the wound. She said that it is doing wonderfully and I don't have to pack it any more with gauze. We are very happy about that, because it was very unpleasant for David and for me. I never thought I could do it....I have found that I can do a lot of things that I never thought I could do. For example, I'm still giving David an enoxaparin shot every morning and every night, and I'm able to do it without very much trouble. At first, I could barely, barely do it....anyway, we were glad to get that good report from the surgeon, especially since they thought he might have issues healing since he's immune compromised and also has done chemo. The surgeon also cleared David on her end for another BBBD treatment. We have an MRI and appt with our NO on 3/15 and then I'm assuming they will schedule another BBBD at the end of March. Something that we are dreading...but we know it needs to be done.....so much turmoil in my heart....
I am fearful of what the MRI on 3/15 will show. It's been a long time since David has had chemo. The last BBBD (the one that left him so messed up) was in December. Looking back, since David's recurrence in July, he's only had three real chemo treatments, not counting the clinical trial he did at NIH with Sutent---that did nothing for his tumor. It grew over 25% while he was on that clinical. So David's last dose of Temodar was April of 2011. We did Sutent in September and then intra arterial chemo in October, and November we did the first BBBD, and then in December, we did the second BBBD. I think we are lucky--blessed--that David's tumor hasn't overcome him, considering how little it's been treated since the recurrence. I am hoping and praying that the MRI isn't horrible...that it is stable from the last good report that we got in January.
One of the things that is scaring me is the increasing frequency of David's seizures. He's been having more of them. They are not tonic clonic ones..they are focal seizures but they still scare us. One night, David had TEN of them. His leg jerked, his eyes blinked, his mouth pulled to the side. He finally woke me up and I gave him a Lorazepam (per the neurologist on call) and he didn't have any more that night. We saw his seizure specialist and he doubled the Gabapentin. Two nights later, David had 5 more seizures. He also had two seizures one other night, and one seizure another time. They only lasted about 10 to 15 seconds. But what do they mean? Does it mean bigger ones are coming?
So yesterday on the way home from seeing the surgeon at OHSU, David had a small seizure in the car. I immediately pulled over and I managed to get a Lorazepam under David's tongue. It passed and I thought we would be okay. I got on the freeway and we went about 20 minutes and David was able to tell me that he felt another one coming on. It was a lot worse. I managed to get off the freeway in a town that I don't know very well....Wilsonville, about a third of the way between Portland and Salem. I called 911. What a nightmare...trying to keep David from hurting himself, trying to figure out how to tell the 911 dispatcher where I was, begging them to hurry and send help....David was doing the whole seizure thing...thrashing, mouth contorted, eyes blinking, terror in his face, trouble breathing....I HATE HATE HATE HATE SEIZURES SO SO SO SO MUCH!!!!!! I was so relieved when I saw the fire truck pull up and six men jumped out and took over. The seizure had mostly passed before they got there. Even though it was a strong one, it didn't last very long...only about 3 minutes...which still feels like an eternity. They talked to me, checked David out, I called OHSU, and the end result was that we went ahead and drove home on our own. I was very nervous though.
I've been trying to tough it out, but I think I have really been traumatized by those big seizures. I hate myself for not being able to get over it and not be such a nervous wreck, but I may need to go and talk to someone or do something to get help. Any time I hear a thump or any kind of rhythmic noise from David's room, I almost have a heart attack and I run as fast as I can to his room and I burst in like the house is on fire. It's always something like David shaking out a tee shirt or tapping his toothbrush on the sink....
Other than the seizures, David is doing better. He hasn't had as many headaches, and he's not as tired and shaky as he was. But when he has a seizure, that takes a lot out of him. He had just said that he was finally feeling better when we were at the surgeons...about an hour before the two seizures on the road.
When we saw the seizure dr., that dr told me that I was just like all the other parents that he sees...terrified by seizures. He said that I'd get used to them and that they just happen. I don't know...am I overreacting? Am I just a nutcase? I seriously don't know if I should not be so bothered by seizures. How can I not be terrified by them? The seizure doctor said that he didn't think a seizure would kill David. Then he goes into this big old talk about something called SUDEP..."sudden unexplained death in epilepsy". He scared us pretty bad. I went home and researched it and I don't think that David is a huge risk for it but I still don't like it....I HATE IT. It sure didn't help my anxiety level. This seizure doctor....we have to find a new one. He's not helping me or David very much.
Right now, David just doubled up on Gabapentin. He's taking 600 mgs, 300 2x a day. He takes 3,750 mg of keppra....1,875 2x a day. The seizure dr says we are walking a fine line....any more medicine, and David is going to be really sedated. He already sleeps until 2 pm some days. The dr says we may need to learn to live with the focal seizures. Well, maybe I could learn to do that if he could guarantee that David won't have any tonic clonic ones. And of course there's no guarantees whatsoever. I thought that maybe the extended release morphine might be making David more groggy, so we are trying to wean him off of that. Oh, by the way, I can't have any of the nasal or rectal anti seizure medicine because the seizure doctor says I could kill him by overdosing him....he won't die from the seizure but he could die from my medicating him. Maybe if David can get off the morphine and the Dilaudid....
So...we are on a holding pattern, waiting for March 15th to see what's going on. Hopefully we won't have any more seizures...but I'm afraid that's not a very realistic expectation.
Is anyone else out there having multiple seizure issues, and how are you addressing them?
Love and blessings,