Jenelle's Journey

For the past few weeks, we've been trying to get Jenelle healthy so she can start the Ketogenic Diet. On February 2 at her follow up for the "roto virus", she was diagnosed with an ear infection. At her follow up appointment for that ear infection just last Tuesday, the doctor noted that the ear was still infected. Poor baby. Then on Wednesday, we had a big scare.

Jenelle's physical therapist called me from her appointment with Jenelle and informed me that she had had a seizure that lasted over 2 minutes. This is most unusual for Jenelle because her seizures usually last only seconds and are usually over before you can blink. The therapist told me that her legs and arms jerked in what she considered to look like a "grand mal." Jenelle fell asleep immediately after the seizure, and seemed OK. I then emailed Dr. Phillips to find out the protocol, and to see if he wanted to see her. Most doctors consider a seizure a medical emergency if it lasts longer than 5 minutes. Considering Jenelle has never had seizures of that length, we were concerned. After an hour I still hadn't heard from Dr. Phillips, so I called daycare to check on her. They told me she had another seizure lasting over 2 minutes that was similar to the one earlier… except this time she was "screaming" during the seizure. I emailed Dr. Phillips again, and put in a call to his nurse to have him paged.

When I finally got a call from Dr. Phillips, he told me to get Jenelle home and observe her because he trusted our opinion of her status in that we can usually tell when her seizures are serious. I then realized that I had missed a dose of her Vigabatrin the night before, so we assumed that may have caused the increase in seizures that we were seeing. Brett picked up the kids and when I met him at home Jenelle seemed fine. She was alert and even rolled over to look at me when I said hello. I began to play with her for about 20 minutes, then I got to witness the new seizure for myself. It was frightening to say the least. Here eyes rolled into her head, her face was frozen and contorted, and her body was stiff and ridgid. Her "moan" was not a normal noise for Jenelle, but rather low and gutteral. After her body stopped being ridgid, her legs began to jerk and arms were flailing. In my email update to family, I spared the details, but am giving them here as this may help others with children who have seizures. Frankly, ?no one should see a child in this way. I then screamed for Brett who was in the other room and although he didn't see what happened, he said he heard it from the other room and was frightened all the same. I then spoke to Dr. Phillips again, and he thought it was a good idea to go to the ER to get checked out and make sure her ear infection wasn't worse.

The ER was packed on a rainy night, but we were taken ahead of many patients and still had to wait 3 hours to be seen. Jenelle had one more of the "new seizures" while we were waiting as well as many of her normal seizures. They were going to give her some IV fluids and take blood for a white blood cell count, but after having 5 nurses attempt unsuccessfully just to locate a vein, the ER doctor decided just to treat her symptoms rather than torture her. She was given a shot for the ear infection which they said was bad, but they'd seen worse, and a shot of Ativan (which is basically Valium) to keep her from seizing during the night. Dr. Phillips had instructed us to increase both her Topomax and Vigabatrin to see if that helped. Amazingly, she hasn't had a seizure since last Wednesday night, so we must be doing something right! When I emailed Dr. Phillips today with an update, he said to keep her at the same dosage of meds to see how she continues to do. Ultimately it was the ear infection and my missing a dose that caused this "new" seizure that we were seeing. Amazing how her stability rests on so many factors.

I spoke to another parent yesterday of a child with seizures, and she told me her son has seizures sometimes that last longer than 30 minutes. I hope we never have to see that in Jenelle. As soon as she finishes her second course of antibiotics and gets the "all clear" from her doctor, we should be ready to start the Ketogenic Diet. I know that all of you continue to pray for Jenelle, but if you could send us extra special prayers and positive thoughts that she stays healthy so we can start the diet soon, we'd appreciate it!

Jenelle is set to start her new school the first week of March. I will update again once that has started. Thanks so much for the continued prayers and positive thoughts!