Demi’s EEG last week came back without any seizure activity but there was a spot that is concerning for the potential for seizures. We were ok with these results because we have already been informed she is at risk for seizures months back.
Her glasses (frames only) came in today and we sent them off so her lenses can be made! I just can’t wait! We went with a little something different than what we did for big brother but I’m happy with our choice!!
Ok where do I start with this next part?
So on Saturday, Brandon and I were in Atlanta for the LSU game and at half time I got a call from my mother in law. She was so calm but informed me “Demi is ok now, but I had to call 911.” I froze, became emotionless and just listened. She began to describe what happened and as a nurse all I could think was “seizure.” The firefighters got there immediately and then the paramedics and I stayed on speaker phone so I could hear everything. Everything was good and calm, Demi was playing and she was totally herself by this time. I was pleased to know she was fine overall but I seriously struggled with our distance until I could finally see her in person.
My mom and my sister drove over to pick up Beau and see Demi. I felt good knowing so many were trying to help us when I’m 7 plus hours away. Everyone reassured me how Demi was doing just fine! I was getting picture and video overload and that helped.
Today I spoke with Demi’s neurologist and we will begin medication for seizures as a part of our daily meds. I’m not crazy about more meds, but we will do whatever Demi needs and we can always back off later if she continues to do well.
Demi has been wonderful, perfect and happy! She did well with OT today and I’m so pleased. Tomorrow we will start the new medication.
I was looking over her lab work from today and noticed her white blood cell count (neutrophils) are higher than usual. This is usually her lowest point of the week and we would typically administer a shot tonight. I decided I needed to call the on call hematologist, which just so happened to be Demi’s doc and ask about holding the shot since her values are actually a little high. We chose to do so and repeat her lab work Wednesday. The shots that Demi gets to raise her white blood cells can cause seizures if they get too high (really high). So this momma is on it! So is her hematologist, and I feel comforted in knowing we are working together.
We will be looking at the potential of her seizure to have been caused by her shots but her hematologist feels confident that it’s not from the shots. I am not convinced yet, but can be once we just check some things out.
Praying for our girl to do well on this new medication and that we can determine if the neupogen shots had any role in Demi’s seizure or not. Also praying that we do not have any more seizures.