Driving home from the hospital the other day, just to take a shower, this new song by the Black Keys came on the radio. It's a good one and so appropriate for the title of this post.
In my last entry, when I described Josie's FOXG1 diagnosis, I spoke too soon when I said it's still unknown if her "attacks" are seizures. I have been sure that they are seizures, despite four neurologists telling us they are not as all the EEGs did not pick anything up. Well, we know now that they are, in fact, "*ominous" seizures.
On April 18th at 7:30 pm and on April 30th at 2:30pm Josie had the worst versions of her "bad attacks" (now known as seizures) that caused her to become unresponsive and turn blue. On both occasions I gave her breaths until her color came back.
We knew right away that they were very bad because she was staying stiff for too long. It's usually one second of stiffness, eyes stunned, break, then again. But, in these two episodes, her stiffness felt like three to five seconds long and I couldn't get her out of it. I was yelling "Josie, Josie," and she didn't respond and started fading off, eyes rolling to the side and up, she lost her color - turned blue. On both occasions we called 911 and was rushed by an ambulance to the hospital.
The last one, on April 30th, was the worst one yet. I gave her breaths for longer than the previous times and once her color came back, she went into the attacks again. The EMT took her to the ambulance. Our nanny, Janice, told me a few days later, when we were able to laugh at each other, that I ran to the ambulance with my sneakers half on my feet and my arms reached out like a bird. Tanner wished we got video of that! Anyway in the ambulance, they gave her a nebulizer. She was still having the attacks - they stopped when we got to the hospital.
The greatest sight was seeing our neurologist, Dr. Maytal, who is the Chief of Pediatric Neurology at LIJ and was already at the hospital. You see, we had seen him the week before in his office, a few days after her April 18th episode. At that time I told him I am sure she had a seizure and I will stay in the hospital doing EEGs until we find one. So we scheduled a video EGG that was supposed to take place the very next day on May 1st. Well, the video EEG started a day earlier than planned.
On Thursday night in the hospital she had a mild episode where she stiffened and looked stunned. It only happened about three or four times, but I called the nurse in and I knew it was caught on camera. The next day Dr. Maytal said he reviewed the tapes and didn't see any seizure activity. This was the fourth time we were being told this. He said GI would come in and talk to us about reflux, which often presents like seizures or spasms. Yes, I know, we've been down this road. I did speak with GI and there are issues there we are addressing.
I told Dr. Maytal she had the episode at 8:30 pm the night before while hooked up to the EEG. I said, "please find that moment on the tape and tell me that is not a seizure."
He had me sit with him and in the second when I said, "there it is," he looked closer at the EEG activity and his face changed.
He said, "Yes, that is it and that is *ominous. I am going to show this to other neurologists and come talk to you." He said, "you caught it mommy, you are like a hawk and you are persistent." I refrained from saying, Damn straight I am!
So her seizure was identified as a myoclonic seizures, although it was said that it's hard to say for certain the exact type of seizure it is as they are not typical.
Josie started Topomax on Friday. On Saturday night (at 2 a.m.) she had more seizures. Unfortunately, she was not hooked up to the EEG because her skin needed a break. Rich got video on his phone and the doctor gave her Ativan to stop it. The Ativan did stop it, but on Sunday Josie couldn't swallow and was so cranky. I had them give her an IV since she wasn't eating or drinking. They hooked her back up to the EEG. There were no events and on Monday morning they took it off of her and we talked about leaving. A few hours later, in front of the neurology team, but again not on the EEG, she launch into more attacks. She came out of them on her own after about 20 minutes. We still came home later that day.
We don't know if the Topomax is working yet. I have the emergency medicine (Dizapam) at home with us so if the "turn blue" seizures occur again, I know we have this medicine to stop it. We will not take our eyes off of her. I am praying this medicine works and the worst seizures are behind us.
I must say, the support and love that has been shown to me over the past few weeks has been amazing. From family and old friends to brand new friends, we have been so comforted by the incredible concern and offers to help us in any way. And I believe that all the people praying for Josie to overcome this will help her do just that - overcome this.
Josie fell asleep on my chest after the April 18th seizure.
In the ER with the EEG hooked up - just waiting for our room. I was so relieved she was safe.
My precious little girl
Happy with her favorite ball!
My diet for 5 days.