Relief

(photo by Kelly Wood)

As parents, sometimes, you just have to go with your gut feelings about your kids. Who knows them better?

Friday was a bit of a strange day with regards to Jordan, her EEG, and her medicine. Her EEG on Tuesday showed moderate improvement, and we definitely saw a reduction in quantity and strength of seizures while she was on the ACTH. However, Dr. X, who we dislike and frankly, distrust, told us to wean her from the ACTH, and that we couldn't use it any more because it was for short term use only. She was going to prescribe another drug that she could start taking over the weekend . . . .

This all sounded fishy to Devon and I, and we were very disappointed to stop something that was working. We did our internet research (including parent comments on the Infantile Seizure Yahoo Group), and found that 2 weeks was in fact a super short amount of time to be on ACTH. Most kids are on it from 8 to 12 weeks. And, to top off the insanity, the new drug she was going to prescribe normally isn't even used for IS. Can you say "frustration!?"

Then something great happened. Dr. Y, the one we happen to like and trust called, and was appalled to hear that we had stopped the ACTH. We still had some left, so as soon as we hung up the phone I gave her a shot. It was a huge relief to both of us to continue with what was working, and it felt great to have our questions and concerns listened to and considered. We have an appointment with him tomorrow, and for once I'm actually looking forward to going to a doctor visit (well, that might be a little strong, but it's all relative).

More relief on Sunday night. Jordan is somewhat screwed up with her ACTH doses, and we think that was making her a little crazy. She seems to be hungry all the time, and super fussy (well, for her). We decided to make a Sunday night run to the local hospital for a blood pressure check, and were glad to find that, although it was a little high, it wasn't too bad.

And speaking of the new local hospital, I can't tell you how nice it is to have a brand new hospital down the road a couple miles. It's as nice as any downtown office building (and feels like one), and it's usually pretty empty, so the nurses (and even the attendings sometimes) are more than happy to do a blood pressure and chat for awhile. It's the best kept secret around. And, free valet parking! Now, if we could just get her docs to get their Washington licenses and start working up here in Vancouver.