Gosh it seems that I just posted that we were in the EMU on August 20th. We were. We left there on August 23rd after having tried 3 doses of ACTH which our neurologist felt did not work well. We added Felbatol back in and discontinued Zerontin again. We had minimal to zero seizures for about a week then they started coming back again and by Saturday they were coming back with a vengeance. Evan had 75 by Saturday afternoon at 2pm. These are the seizures where is eyes roll up and he blinks really fast, sometimes his head will fall to one side and occasionally his right side will twitch. I gave Evan his rescue medication but that did nothing as I suspected it wouldn't but I knew that I had to try that before I called the neurologist on call because that is what they would tell me to do.
Around 11am I called the Dr. and reported what was going on. This was a neurologist that had I had not dealt with and who did not know Evan. She increased his Keppra in the AM. I kept tracking until 2pm but stopped because I was making my self crazy. Evan continued to have seizures averaging every 2-5 minutes.
Sunday morning he woke up and the seizures started almost immediately again. I tracked until 9:30 and called the Dr again. Same Dr was still on call. Her advice was that it was time to take Evan to the ER and possibly be admitted to the EMU. I was having a hard time with this decision because I was fearful that we would get to the hospital and another Dr. would start messing with Evan's medication etc. I was trying to stay home and just bide my time until his regular neurologist returned on Tuesday but it was really just killing me to sit and watch him have so many seizures so we went.
Once at the ER he was given an IV and blood was drawn so that they could measure the levels of medication in his blood. The ER dr consulted with the on call neurologist and they decided to admit Evan. While in the ER the on call neurologist also ordered a mega loading dose of Dilantin. She gave this in hope to stop the onslaught of seizures. All the medication really did was make Evan really sleepy and acting weird. On top of this he had vomitted twice.
Evan got the dose of Dilantin at 3pm. He slept for almost 5 hours and was then acting very weird where he would wake up and be interactive and then suddenly have a seizures and go right back to sleep. My husband and I were very worried for him at this point and did not realize the amount of medication he had been given. The on call neurologist was not very much help and was telling us that the crazy activity in Evan's head is his baseline. We were just frustrated and scared. So we made a plan just to wait it out until his regular neurologist came back. Evan went to sleep and pretty much slept well most of the night.
Monday morning came and we found out that his regular neurologist was on his way home and would look at the EEG and come up with a plan. I felt hopeful that things would get better now. I did not feel that Evan wasn't getting good care I just felt like the Drs. that were trying to help him did not really know him well enough nor did they know the neurologists plans or thinking as to why he was on 5 meds etc.
So today Evan has perked up a bit and is still having a lot of seizures. I spoke to his regular neurologist on the phone and he really wanted to try adding one more medication back in to see if there is any improvement in the next 24 hours and we are going to fast forward on starting the ketogenic diet which we were going to start on Thursday or Friday anyway. I will be talking in more depth with the neurologist tomorrow about why Evan is acting so different but the Dr. feels his EEG is not that much different. My thought is that perhaps Evan's body is catching up to his brain. His brain has always been much worse than his body.
On top of all of this Evan started having a fever. He had a chest xray done and they are looking for pneumonia because there is a good chance that he aspirated possibly when he was throwing up. This could be very worrisome too.
This is our fourth stay in the last 2 months. The other times it has felt casual and that we were really there to see if new meds would work. This time feels so much more different and emergent. Our Dr. is pretty much almost done with being able to try new medications. Our next step is the ketogenic diet which we are starting but if that doesn't work then we have to consider brain surgery. That is pretty scary.
Now we are waiting on a chest xray to see if he has pneumonia. This thought scares me too.
At this point I don't even think I can hope for complete seizure control. I just really want less seizures, less medications and maybe a better night EEG. I am not wanting anything unreasonable. I don't want to subject my son to brain surgery. Especially one that may not even work. We have been battling these seizures for only 3-4 months but it feels like forever. I just want them to get better. I want my sweet boy to not lose any skills or have regressions.
This is one of the hardest things about having a child with special needs. All of these decisions that we have to make as parents. What is right? More meds, less meds, being in the ICU with our child in a coma, brain surgery, special diets. And none of these are a cure or a guarantee. We could very well find a great combination and then again be back in this situation in a year or so. So we listen to the Drs, we talk with eachother, I pose questions to other special needs parents and then we hope the decision works or is the right one. When his Dr. offered the ICU on a vallium protocol I almost said let's go for it. It is a desperate feeling when typical things don't work and even what the Dr. calls the nuclear weapon does not work.
Even though this is all so hard at sometimes. We keep on fighting for a better quality of life for our son and for our family. He is the most amazing child and he loves life in spite of it all. He has an amazing big brother who is the sweetest kid and accepts this craziness so well. He also has a caring big sister who he runs and give hugs and kisses too. We have an amazing support system in our parents, other family members and friends. Without that I don't know how we could get through these harder times.
No comments:
Post a Comment