Poor Jen can't catch a break with these seizures. Today she had 4 sets of cluster seizures. They really effect her day. The last set was around 5, right before she was headed home from school. So the total today was 14 seizures!! Tomorrow we go for lab work to check levels, although there really is nothing the doctors can do for her now.
Her meds are maxed out pretty much. The next step would be the Vagal Nerve stimulator. But once again, her surgery for the g-tube has to come first. We have waited another week, no date set yet. I don't really understand it, the doctors say she must have a feeding tube, as she isn't maintaining her weight, but no one is in any hurry to set a date for the surgery, we will wait til Monday and call again. I said to the secretary today, this is not elective surgery we can wait for, it is surgery for a feeding tube, the sooner the better, my little girl is getting tinier by the day. So it looks like mid April at this point, hopefully she will stay healthy!!
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You're right, no one should have to suffer with these seizures, especially not our babies. I'm working on putting together a blog for Kayla my daughter w/ Lennox Gastaut Syndrome. We are going to get her tested for CDKL5. I've not set that up yet, been a busy year so far, I know you know how that goes. As my husband and I were looking at the pics of your Jennifer, we see many similarities between her and our Kayla! They even have the same taste in wheelchairs! I picked out Kayla's chair color, Razzleberry, beautiful! But seriously, I love following your blog, because they are so much alike. You are in my thoughts and prayers. Diane
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