As you know, Jayden's been going through an extremely long weaning process to get him off of 3 different medications that are not working for him and on to one single medication. First, we started by weaning him on to the one medication he will be taking (if it works for him). He had been doing well with the weaning. A few behavior issues here and there, but no bad issues like increased seizures. I think he's had 2 seizures since the 4th.
Anyway, I've been keeping a daily journal during the process. We increased his dose of the Zonegran on the night of the 15th. Yesterday, the 17th, I went to update his journal for the day and when I was logging his behaviors I noticed there was nothing to report for that day b/c he didn't really do much but lounge around. Of course I won't complain about that b/c we all need that time to regroup! However, he took a really short nap and had a very hard time falling asleep last night. Then this morning, he slept in until 10:10 (he had usually been waking up at 7:30 each morning). I peeked in on him a few times b/c I get really nervous when he sleeps late. At 10:10, he woke up and called for me. I climbed in bed with him and we laid there snuggling and hiding under his covers "from the monsters". Then he said something that I couldn't understand so I asked him to say it again. He struggled to find the words (which he usually doesn't do) and then said "I have to pee pee." I really was not worried about him at all at this point. It was still just a typical morning for us, just with a late start. After he went to the bathroom we went downstairs and I gave him his medicine and he sat at the table and was waiting for his late breakfast/lunch. While I was fixing his sandwich he had a dazed look to his face and he kept asking me for his "mama". Just for reference, he does not call me mama. He calls me mommy. And I know that kids "grow up" and start saying mama b/c it's cooler ;) but this wasn't the case. He wasn't asking for me b/c I was right there and he was still pointing across the room for something else called "mama". I kept asking him what did he mean and he would just repeat "I want MAMA!" and he was getting very upset b/c I didn't understand. My husband came downstairs and Jayden said "Daddy, I want mama." My husband told him, "Your mama is right there." He started crying "No I want mama!" and pointed to our room. My husband took his hand and told Jayden to show him what it is he wanted. We haven't had to do that with him since he was 2 yrs old :( So he led my husband to our bedroom, over to my side of the bed, and pulled back the sheets. Then he said "Mama's gone!" Mike came back in the kitchen and said, "Nia, I think he didn't know who you were for a second." We asked him where is mommy and he got a little frustrated but soon enough, he pointed to me. It hurt my feelings a little but I figured he was just still very tired or something. Well after he ate he continued to talk but much of what he said made no sense. It's hard to explain, but he wasn't babbling which he does a lot when he's playing with toys. He was actually holding conversation with me, but none of it made any sense. He called the front door a "baba". Then, after 2 hours of being awake, he fell asleep on the couch. I didn't want to over react, but I sent a quick email to the Dr (I'm so grateful that she gave me the ability to be able to reach her) with my concern. She immediately emailed me back and told me to bring him in tomorrow morning.
My guess is that he's having a different type of seizure that is making him very tired and confused. I'm definitely ready for him to be well and catch a break! Please keep him in your prayers!
2 months ago