In "my head" the catalyst for his recurrence of seizure activity was the day of his surgery when he went 16 hours without meds. We had a repeat of this on his second visit to our local hospital via ER when he went about 12 hours without seizure meds. In my non-medical mother brain.....the two seemed to be if not totally, then at least partially to blame for our now roller coaster of two and three daily seizures. They were even beginning to wake him up out of a sound sleep. Finally....yesterday after having three in an 8 hour period, I called the neurologist yet again....third call in as many days. They said bring him in and off we went.
After the usual check to see if their list of meds and dosages and my list coincided and after a multitude of questions about his seizure history.....this go round, then I started to ask some questions of my own. I really wanted to know if my mother suspicions were anywhere near the truth. Since I had been told several times over the years, that Davids seizures were likely originally started because of his first febral seizure back in 2008, then I wanted to know about his new seizures. I asked if going without his meds for those long periods could have been what sparked these new ones and I was told a definitive.....YES! It was explained to me that seizures were like starting and maintaining a fire. In other words....it takes a lot to get it started but very little to keep it going. It took a lot (the first febral seizure) to get David having seizures, but now.....another febral seizure, missed med doses, etc can all be the kindling to restart and keep the fire going. And like myself, the doctor believes that the long period of missed doses were what has rekindled his seizures. So where do we go from here?
As much as I hate it, we are kind of back at a starting point. Without an EEG we can't know for certain but likely his brain is showing signs of seizure activity all over again. His last EEG showed none. The doctor turned his Vagus Nerve Stimulator (VNS) up and we have gone back up on meds that before surgery we had been able to decrease and we have once again added new meds to help control the seizures. We will stay on this path until we are sure we have the seizures under control. Likely we will be looking at an EEG in the next couple of months to make sure we are getting it all handled. Then hopefully from there we will be able to start backing off on the meds again and be headed in the right direction.
So in my frustration over all of this, I asked the doctor what I should do if/when he ends up in the hospital again and the hospital staff can't get him his seizure meds on time? I was told to make sure I always had ours from home and to give them to him myself. I said, "But what if they tell me absolutely not and as in one case, I have a nurse try to take his magnet for his VNS away from me?" Do it anyway I was told and have them contact him if they find it to be a problem. Great! I wonder how much trouble this will get me in....and what new battles will ensue because of it????
Bottom line though.....my mothers brain/intuition or whatever you want to call it was right. The nurses/doctors or whoevers inability to work with the pharmacy and get the meds in a timely manner was what triggered all of this fresh hell of seizures. Sadly this was not one hospital but two and in two completely different states. This tells me that there is a problem where this kind of thing is concerned and I am sure my child is not the only person affected by this type of thing.
To anyone who reads this that is medical/pharmaceutical staff in a hospital, I know you are crazy overworked but the fact is that certain meds can wait and certain meds cannot. For some this can be the difference of how good someones quality of life is and in others the difference between life and death. Seizure meds can actually affect quality of life and in some cases....life itself. Nurses....PLEASE think about this when a patient or a patients parent tells you that their meds are needed ASAP and pharmacy.....please don't make a nurse have to contact you repeatedly to get the right meds and the right dosage to the patient. Because of just this thing.....David had taken ten steps forward and now he is about 25 steps back. It sucks!
To top this all off, when I went to my regular pharmacy to pick up Davids new meds, it took an act of Congress to get the new meds. Because of all the seizure meds that David already takes, insurance apparently flagged me on the computer as the doctor had written a new script with an added dosage on something he already takes and a script for a new seizure med. After showing insurance cards, ID and signing my name in blood.....they finally filled the script with the warning that my insurance may not pay for two of the meds next time. Aaaaarrrrrrrggggghhhhhh
Yes.....in case you can't tell.....I am frustrated! This too shall pass I know, but why when life can be difficult enough all on its own....do others have to jump in and make it more so? More money I don't have, more time going backward instead of forward and more frustration which it seems I have more and more of on a daily basis! It is days like this that I just have to refocus and remember all the things I have to be grateful for and just pray that I can find a way to take care of the rest!
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