03-01-2003

This brings back awful and distant memories for me. At one point, Katie seizured for 5.5 hours per day when we added up the numbers and that was about the same age as Azaria. The description of her seizures also sounds very similar to Katie's which continue to change. I too felt responsible somehow for all aspects of medical care. It seems exhauting to just think about it and it's been so many years now. One of the veteran Mums told me that the first two years were always the worst and in our case, that was certainly true.

We tried ACTH and it stopped the seizures for 24 hours, but then they emerged again and in the end, we saw no benefit. Katie retained a great deal of fluid, so much so that her eyes were pretty much swollen shut. No one mentioned to me that this placed tremendous strain on her liver and heart as well as kidneys. I would ask a great deal about side-effects and about the statistics concerning side-effects with children with neurological issues especially. We lost our relationship with our daughter while she received ACTH- she simply was unable to respond to us in any way. We also had a doctor who didn't taper(slowly decrease) the ACTH dose off gently and we feel this led to a statis epilepticus episode which led us to the emergency room and a scary hospital stay.

I just wanted to let you know, that my thoughts about seizuring have changed. Nancy Hately was absolutley right. I don't think Kate ever really responded much to meds (and we tried alot). As she aged, the seizures dropped down to usually one per day - no where near the early days. They are apart of her life. If she didn't have them, she would probably be more alert and have higher development - but not perfect development. In my case, I had to accept that I couldn't fix this. (And I take pride in being able to problem solve).

In the end, I'm not so sure, Kate needs to be fixed. She's busy and happy and basically lives the life of reillly. She learns new things every day and though she may not have the numbers of friends as others, her friendships are truer and deeper than many others- despite their superior I.Q.s or lists of achievements. It has been very freeing living with Katie. It took me over 5 years to sit back and enjoy the ride.

I don't think I can tell you very much about meds that would predict how Azaria will do. My guess is that you will already be the best judge of how she reacts. I'd try to ask your doctor to work through a Plan A and also Plan B in case Plan A is a complete disaster.

I remember the crying during seizures- my daughters and mine. I used to wonder what was the point of so many tears. Now I think those tears help me realize how sweet life can be too. This week, our daughter who's ten passed another major milestone for the Irish- she punched her pesky brother for the first time. Now, isn't that sweet!

The Hoyles