Thursday, August 16, 2007

Long Day at Primary's

We had an appointment with our neurologist at Primary Children's Hospital today at noon. I got home at 4:45!! He said all is well with Kendal and is glad the seizures have not come back again. She is supposed to continue with the Topamax as usual. That is what we sprinkle in her food. She is starting to not like it anymore and it is getting harder and harder to get her to take it. She has learned all my tricks - the banana sandwich with topamx inside, the bread bomb with topamax inside, the cheese and cracker sticks with topamax mixed in the cheese, and even the chocolate pudding laced with topamax. So last night Matt came up with such a veterinarian remedy. He got a syringe, put maple syrup in it, then the topamax, then more syrup. She didn't even know what hit her!!! She sucked it right down! Vets do that technique with horses and molasses!
Anyway, today at the appointment I asked him what she really has, a name for it. He told my infantile spasms. I told him I was hoping for just plain ol' epilepsy because infantile spasms doesn't have that great of a prognosis. He said her EEG patterns are much more like IS than epilepsy. DANG IT!! Oh well. He also said the effect the topamax is having on her speech is out weighed by the good chance of the seizures coming back without it. I guess I get to be patient. While we were waiting in the room for the doctor to come in, I noticed Kelsey had all kinds of little red dots on her face and arms. I saw the ones on her arms the other day and figured they were mosquito bites. Kendal it seemed had broken out with acne lately, and then I noticed bumps on her arms also. Great, chicken pox! I was told in June when we started the ACTH that it was a major immunosuppresant and chicken pox could actually be fatal. Great. I pointed the bumps out to the neurologist and he went a little neurotic!! He sent us down to the ER and called 'Infectious Disease' division to see if it was really chicken pox. After 2 hours, 10 minutes, and being able to watch the entire Ant Bully movie, we were released with a clean bill of health. THANK GOODNESS!! Kelsey watched the movie, Kendal and I wrestled with me trying to keep all the medical equipment in Exam Room 1 out of her mouth. I hope the doc doesn't miss the roll of tape and the few tongue depressors we went through!
So, we are home with an ugly rash that is not chicken pox. Now we get to go to 'Back to School Night' even though we have never been there to actually go back. Oh, and dinner will be served at the Utah State University Alumni BBQ at 6:30. No cooking again - SCORE!
Oh yeah, when I went back to the neurology dept to give Dr. Thompson my report, I saw life-size stop sign signs that read "Stop, if your child has chicken pox or has been exposed to chicken pox in the last week, do not enter this waiting room." I sure didn't notice them the first time I went in!


Anonymous said...

What a LOOOOOOOONG Day! I am glad no chicken pock are around your little house. Sweet Kendal, poor thing. I haven't heard of infantile spasms before. You will have to tell me more about it. I was just so good to see her smiling agian. Boy, did she love Brittnay's purse. It was like a gold mine of new stuff to explore. Hope all is well and your in our thoughts and prayers. give Kendal Smooches from me.

Brittany said...

I do not miss the Looooonnnngggg days at Primary Childrens, although the lunch around there is pretty tasty! Poor Kelsey and Kendal--It's time you guys had some GOOD luck! If it will make Kendal feel better, she can come play shoes and purses in my closet anytime, in fact, my husband will probably let her leave with some! (you scared me with the chicken pox know me!)

Krista said...

I'm so sorry that your little family is going through this. I hope that things get better for you. Kendal will be in my prayers.


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