Cause for praise

We had a really good appointment with the neuro today. I am so encouraged by Ella's progress as Dr. B sees it.

As I mentioned previously, Ella met criteria to start weaning from the ACTH last Friday. She has been seizure-free since June 25th, even while on the lower dose for five days now. Dr. B said we could continue to decrease the dose once every seven days until E's off of it completely. She had mentioned this as a possible weaning schedule at our last visit, so I had already calculated how much more ACTH we would need (geeky nurse much?). It appeared to me that we would be 0.2mL short. I brought this up in passing to Dr. B, and she said that we could wean every six days instead to avoid running out of the med early.

This means that, although our insurance has never approved payment for us, we do not have to stress about appeals and such anymore. What a blessing! And I am so thankful for NORD, the organization that has been providing the ACTHar gel we're using at no cost to us. They have been a Godsend.

Developmentally, the neuro (and the physical therapist that saw her yesterday) do not think that Ella is that far behind. She has most of her 4-month-old skills, but very few of her six-month-skills; however, she will not even be 6 months old until tomorrow. As a precaution though, and to work on her core muscle tone, she will be seen twice a month for PT for the time being. This way, we can catch any problems that might crop up and can learn new exercises to work on at home with her in between visits.

Ella is becoming more vocal and alert & active. Dr. B mostly attributes this to the wean from phenobarb. If that's the case, I'm ready for her to be off the stuff quickly, but keeping this current pace, it will be 8 more weeks yet.

At the end of the appointment, Dr. B. said she wanted to check some more labs "like last time." It reminded me to inquire about how the levels were two weeks ago. She smiled and said, "Everything was just perfect." She shook her head slightly, almost incredulously, then said something to the effect of, "You know, when you think of all the best possible responses to treatment, she's doing it. I wish all my babies could wean so quickly off of ACTH and do so well." Awesome!

It seemed that she was also saying Ella's response was especially good, considering that her IS is symptomatic (and therefore less responsive to treatment usually) due to the brain malformation--which Dr. B reminded me "will always be there." So Ella will continue on keppra after weaning from everything else to cover the very likely possibility that other seizure activity might be in her future. I asked what it would mean if E had seizures during the weaning process, and Dr. B said that she would not be surprised or think, "Oh no, what have we missed here." I think we will proceed with the wean as planned. Our biggest goal, which seems to have been met so far, is to get rid of the really damaging type of seizures--the IS. If other types of seizures crop up, we will manage them as they come (and of course keppra covers a broad spectrum of seizures).

♦