Be Careful What You Wish For. . .

(photo by Kelly Wood)

. . . you just might get it.

While Jordan was on the full dose of ACTH she was a zombie, and I missed her! For the past few days she's been on a partial dose, and she's back -- only worse! Crabby crabby crabby & demanding. She wants held, she wants to suck on my thumbs, and she doesn't want to sleep at night.

Oh well, it looks like we'll be back to Zombie soon, and based on what we learned today, I welcome it with open arms. We met with new Dr. Y today, who told us that her EEG last week showed no signs of Infantile Spasms! None. It was still abnormal, but better. Also, she seems to be having a different kind of seizure, but he doesn't seem too concerned about those. He thinks they are easily controlled with more standard medicines, and aren't as damaging.

But, we'll get to those later. For now we need to focus getting the IS under control again, and for that we need more ACTH, and a much slower weaning process. BAD Dr. X, who mislead us, and stopped the ACTH too soon & weaned too fast!! The IS re-appeared as we weaned, and Dr. Y seemed irritated that we'd been told to quit, although he didn't outwardly say it. We were irritated, too, and were glad to find validation in his opinion (after 38 years of practice).

So, we bought more ACTH, more syringes, more "horse" needles, and resumed the full dose (you can kind of see the "track marks" above in Jordan's chubby thighs, remnants from the huge needle size). Now we'll wait and see if the IS goes away again. In the meantime we have 1 pediatrician visit, 1 physical therapy, 1 round of blood, urine, & poop labs, and at least 2 trips for blood pressure checks over the next couple of days. On Friday Jordan will have her 4th EEG, and on Monday we'll head back to Dr. Y to evaluate the effectiveness of the ACTH, again.

You may be wondering why it is so important to get the IS under control. These seizures are damaging, and prevent cognitive development. There are many types of seizures, and the severity depends on what you're dealing with. The sooner we get the IS under control, the more hope we have for her meeting some developmental milestones, even if they are delayed. But, as with everthing else, only time will tell what her abilities will be.

In other "good" news, we found out today that her skin biopsy was negative for a Lysosomal Storage Disease, which is a huge relief. Once and for all, we know for sure, that she doesn't have that. The bummer of all the negative tests is that we're running out of tests to find the cause of all her troubles, and in fact, we may never know. Jordan is among the rarest of the rare, her condition seems to be a freak genetic accident. Based on my research, there are many people who have to learn to live with this "diagnosis," never knowing what the future will hold for their children. Health, cognitive ability, social ability, physical ability, we'll just have to live and learn as we go.

So the moral for today: Just say "no" to bad doctors. In fact, run away from bad doctors. And on a more serious note, demand the best and follow your head & heart.

(photo by Kelly Wood)