Apologies for not keeping up....

I must deeply apologize for never following up after out trip to Boston. So here is a quick summery: Cam and I flew to Boston in a million dollar personal jet! It was gorgeous and a great flight. Now the visit itself, 95% disappointment. I had made an appointment with a neuro-ophthalmologist, which I had been under the impression that she would both brain and eye, which, if you've read about the condition, would've been perfect. Well, it turned out she was basically an eye doctor. So you all helped me get to Boston for a simple eye exam :-( The disappointment was so intense that I didn't want to talk about the trip with anyone. I had worked so hard to get us there thinking we were going to learn new things. The only thing I learned, and something I hold dear and will keep with me forever, is just how generous people are. I am grateful to have that and feel incredibly guilty that I promised I would keep everyone posted as to how he trip went and how Cameron's been doing. So there's the update on the trip. Now, I'll talk about Cam. Post-trip, Cam was still having roughly 4 seizures a day. We fought with meds for almost 3 months. Then, on Feb. 3rd, his neuro gave us the go-ahead to put him on a new med called Onfi, which had only been passed by the FDA on Jan. 1st. It is in the same class as his clonazepam, but studies had shown it to have a higher efficacy rate, and less side effects. I was excited. On the morning of Feb. 4th, Cam woke up sick so I brought him in to see his pediatrician. Diagnosis: sinus and ear infection. We were given the antibiotic, Cefdinir, and sent home. Now, at this point, we hadn't started the Onfi, we were scheduled to start that night. On that evening, I gave Cam his round of bedtime meds: Keppra, Carbatrol, Vitamin B6, and the newly added Onfi and Cefdinir. When Cam woke up on the morning of Super Bowl Sunday, he was, well, off, to say the least. He was awake for only a half hour before he went back to bed, then slept for another 5hrs before waking up and staying awake for only an hour that time. He also hadn't eaten or drank anything in close to 48hrs. I began to get nervous and placed a call with the pediatric on call doctor. Oh yes, I have to also add that Cameron couldn't walk by himself either. He just couldn't stand up, so unstable and wobbly. It was suggested I bring him into the ED. Turns out, Cefdinir can affect the metabolism rate of Carbatrol, which I have to add, was not in any literature, nor mentioned by the dr. Basically, my son was ODing on 1 of his seizure meds. That antibiotic caused his levels to skyrocket making him severely lethargic and unstable. I was absolutely beside myself. Had I waited until the morning, he would've had 1 more dose of Cefdinir and 2 doses of Carbatrol. I could've unknowingly killed my baby. I could've OD'd him. Even now, my stomach turns and I get tears in my eyes. How could this happen? Why was this "possible interaction" never mentioned? The next morning, I called to speak with his neuro. While telling the nurse practitioner what happened, she confirmed that it wasn't listed on neither the Carbatrol or the Cefdinir's labels. But his neuro overheard and said that, yes, it was a known possibility. Problem being, only he was aware and he hadn't known that the Cefdinir had been prescribed. That led to immediate phone calls from me to both the pediatricians office as well as the pharmacy. And a discussion, 3 weeks later, at an Epilepsy Foundation support group meeting. How could this happen? How could such a serious drug interaction not be mentioned on either drug label? My son could've died!! Thankfully, I trusted my gut/mother's intuition. I will NEVER question myself again! Okay, I don't want to discuss the sad and scary anymore, so let me talk about the weeks following. Since starting the Onfi, Cameron has only had roughly 5 seizures in over 2 months!! And he is also more alert and more stable. Onfi has proven to be a "miracle drug," and I couldn't be happier. Now I can focus on the next scary milestone....Kindergarten! Lol! I will save the story of the beginning of this journey for my next post, most likely, later today :-P I just have to add one more thing. For the last couple of years, I have participated in the Golisano Children's Hospital's Annual Stroll For Strong and 5K event. However, this year, I am starting my own team! I am super excited to be doing this as neither of my boys would be where they are now without the amazingness of every pediatric specialty team there. I am asking for support. Please help me hit my goal of $500 that I have chosen to be designated to enhance the music therapy program at the hospital. Moore 2 Love will be walking on June 2nd, 2012, and hopefully, it will be a huge turnout like always!! Here is the link to my personal fundraising and team website:http://www.helpmakemiracles.org/index.cfm?fuseaction=donorDrive.participant&eventID=1080&participantID=112450 Please consider supporting this great event! And if anyone is interested, please come walk with my family. I would love to see everyone there!!! Again, my sincerest apologies to all those who made our trip to Boston possible. I hope you will forgive me for being unable to update you all sooner. Alright, until my next post, have a great Sunday! I hope it will be as lazy as my own!! Lol