I am not person who likes medication… in any way shape or form. My poor husband has to make me take ibuprofen when I get a headache. I would much rather treat a cold with plenty of OJ, Tea and homemade chicken soup then with any of the OTC stuff. So this past January when my daughter Katie randomly suffered from a seizure that lasted almost 3 hours, I was shocked as hell when I agreed to put my daughter on medication for at least the next 2 years.
Let me tell you the whole story:
January 19th had been a normal Saturday at home. We did the normal things, the kids played, we watched a little tv, ate our meals etc. Nothing unusual. Bedtime rolled around and still everything routine, until my husband and I went to bed at around 11:00. Our bedroom is in a loft right above Katie’s room. As soon as we were nice and cozy, Katie began making some strange noises. We didn’t think much of it until we heard a thump, which meant that she had fallen out of bed. Now Katie at that time was sleeping in a toddler bed that at most was maybe a foot off the ground, even so she always cries when she falls out. This time all we heard was silence except for a strange gurgling/clicking noise.
Scot rushed downstairs to check on her and I asked him if she was ok. When he didn’t answer I knew something was wrong. I ran downstairs to find my beautiful baby girl completely unresponsive. Her eyes were open but she was just staring in the distance, no focal point at all. Her body was stiff and her arms and hands were making slight jerky movements. I could tell by the slight blue tinge around her mouth that she was also struggling to breathe.
We called 911 who was there within minutes. Thank God we live right down the street from them. They strapped my tiny girl to a big stretcher and placed her into the waiting ambulance. Thankfully I was allowed to ride with them because I was so scared and I needed to be with her. Katie was so completely out of it that she had no clue what was happening to her. I think the severity of what was happening really sunk in when they told me they were taking us to Maine Med in Portland which is over 30 minutes away, instead of Midcoast Hospital which was right in the next town. It was the longest ride in my life.
As soon as we got to Maine Med we were rushed into the ER where they proceeded to IV her, put her in a neck brace, and intubate her. They gave her medication to stop the seizure and then rushed her in to get a cat scan. Even though she was out of it I can imagine what she was going through, because all I could think about was how much I wanted my mother at that precise moment.
When the Cat Scan was over, we were moved into the Pediatric Intensive Care Unit or PICU. She was out of immediate danger and she was placed in good hands. After a lumbar puncture, more blood work and a catheter placed so they could collect a sample she was left alone until the time came to wake her up from her drug induced slumber.
Fortunately or unfortunately, my Katie is a fighter. As soon as she woke up she tried yanking the tube out of her throat and she managed to be successful at ripping out one of her IV’s. She looked great to the doctors so we were once again moved. This time to the Barbara Bush Pediatric Center where we would spend the night and most of the next day.
All in all Katie took being in the hospital all in stride. The last test she had to do was an EEG. Pretty much they cover your head with all these wires to measure electrical activity in the brain. Since Dora the explorer was on the tv she barely even knew the test was taking place. The doctor came back with the test results and I’m pretty sure that with the shock of what we had all been through and the lack of sleep, I was not thinking clearly.
The doctor told us that Katie had a bladder infection, but most likely that had nothing to do with her ordeal. However the EEG came back with some irregular brain waves on her left side of her brain, which means she could possibly have more seizures in the future. He gave us the option of putting her on anti-seizure meds for the next 2 years and getting a rescue med just in case or just getting the rescue med. The rescue med doesn’t prevent seizures from happening but will stop them if she is having one, while the anti-seizure meds will prevent her from having them in the first place.
I think I was so scared that I immediately chose the anti-seizure meds without really thinking. Now I’m not sure I made the right choice. My daughter used to be such a little bundle of sunshine but now she is as moody as a teenager. She cries at the drop of a hat and is increasingly aggressive to her brothers. She gets mad easily and has told me on numerous occasions that she hates me and she wants to run away. I have a 13 and an 11 year old son and they have never said anything like that to me ever. Hardly anything makes her happy anymore and most of the time she won’t eat anything either. She’s a peanut to begin with so this is a major problem.
Depression and lack of appetite are some side effects to her medication, so of course we let the doctor know. He lowered her dose and had us give her a small dosage of vitamin B6. It seems to be helping a little, but her appetite still hasn’t returned and she still isn’t back to her old cuddle bug self.
Should I have just opted for the rescue drug instead and hoped that she wouldn’t have another seizure so we could have avoided these side effects, or did I do the right thing? What would you have done? Do you have any advice?