Monday, May 22, 2006

The Sith Witch

After Soren's first stem cell injection in January of '05, he was still in a rather bad place. He was on two AEDs which were not stopping the seizures and had the side effects of being appetite suppressants, so he wasn't eating well and was losing weight. Now, this was rather tricky. As you could see from the pictures in earlier posts, Soren had A LOT of weight to lose after the Summer of Steroids. Once we stopped the steroids, Soren slowed down his eating and was feeding off his own fat. But then, on these two drugs, he was just shutting down. Before our first stem cell injection, we went to the neurologist and got him checked out and weighed in. Two weeks after the injection, we returned to the neurologist. Soren had LOST about 5 pounds. That's NOT what kids his age do. So, though we wanted to have a somewhat controlled experiment as far as the stem cells went, we just couldn't. We had to get him off one of these drugs. So we started weaning him off Topomax (or Dopomax, as the moms call it) to make sure he didn't keep losing weight. Still, in order to get enough calories in him, he had to drink Pediasure three times a day.

As for the stem cells, while we saw some progress, we knew we needed to keep trying alternative options while we were waiting for them to take full effect, if we were lucky enough for them to have any effect at all.

So we went to an osteopath. Now, let me say up front that I have nothing against osteopaths. I don't want osteopathic hate mail here, for Pete's sake. I wouldn't go taking my son to someone who I thought would harm him. That being said, we dubbed this osteopath the Sith Witch for a reason. While she was the size, shape, and age of Yoda, she had the bedside manner of the Emperor. She was pure evil.

Now, I know some of my fellow parents who have taken their children to her may feel I am gilding the lily. But, I speak from my experience, and there is no lily gilding going on here. First of all, anybody who goes to her is DESPERATE, just like we were. You have to make an appointment, which, because there are so many sick kids with so many desperate parents, is MONTHS in advance. Then, IF she accepts to take your child, you have to go weekly for about 6 weeks. So you set up those appointments as well, just in case you're "lucky" and she accepts your kid.

Then you have to get there. I know people who have traveled across the country to see this woman. For us, it was merely a trip heading south. I will say no more as to her exact location and personage for fear of defamation of character or the Sith Witch cursing me in my sleep.

We made our appointments. We took Moira out of preschool since it was going to be an all day excursion. And we all piled into the car for the journey. When we arrived, I was taken into a room--ALONE. And there I was quizzed by the Sith Witch. Now, as the mother of Soren, the person who carried him inside her for 9 months, I had gotten used to being asked questions about my pregnancy with this now debilitated child. I didn't like it, but I was used to it. How did the pregnancy go? Did anything unusual happen? Did I take folic acid? Did I drink? Do drugs? Smoke? Blah, blah, blah. No, no, no. Normal pregnancy. Get off my back!

But the Sith Witch had a way of asking this questions that put such blame on me it was horrid. When she found out that I had Soren by scheduled C-section, it was as if I had taken the knife and cut him out myself. Doctors often ask about the birth because there could have been birth trauma that caused the seizures. Well, since he had no birth trauma, this isn't the answer. But the Sith Witch couldn't just leave it at that. "You mean you never went into labor?" she asked horrified. Um, no, I didn't. I went through enough freakin' labor with the first kid who was then born by EMERGENCY C-section. Talk about trauma. I wasn't going to go through that again!

Then I told her that I had experienced some Braxton-Hicks contractions weeks prior to Soren's birth. "How did you know it wasn't actual labor?" Excuse me? Because I've been in actual labor, bitch, and this wasn't it! In actual labor, I feel like my eyes are going to come out of my ass. I think I know the difference.

Next was breast-feeding. Now Soren never caught on to breast-feeding. I tried for 3 weeks. I had to go back to work after 6 weeks. So after 3, I admit it, I gave up. So while he didn't get the benefits of sucking on mama's teat, I pumped milk for 6 months from those engorged babies, so Soren got plenty of the good stuff and my boobs have paid the price. But did the Sith Witch appreciate this? Did she realized I'd sacrificed all I could for my child? No, I was clearly a horrid mother who did not try hard enough to nurse my child. But again, THAT was NOT the cause of his seizures. I know kids who nursed 'til the cows came home, but still had seizures. So lay off!

And it continued with my being horrible for feeding him baby food from a jar (while I admitted I did as much fresh as I could and the jar was not the norm) to her saying that I was having him do too many therapies all once.

After grilling me within an inch of my life, she then took Soren into a room on his own. Alone. Aaron and I were not allowed in. This is how she did her assessment and how, if he was deemed worthy, she would do her "sessions." For all we know, she was smokin' crack and playing solitaire. While the Sith Witch assessed Soren, I told Aaron, trying not to break down, that I hated the thought of returning to this place after what she put me through. But I would do it for Soren. After her private time with Soren, she spoke to Aaron and me together (the kids were being watched by an assistant). She said that she would take this case on. However, she was concerned with the lack of fresh food (whatever).

In the end, we smiled and shook hands, paid our money, piled back into our mini van, and got as far from the Sith Witch as quickly as we possibly could. Again, I told Aaron that if we had to do this, I would be strong and do it. The drive, the humilation and accusations. If it helped Soren, I would do it. But as I drove, Aaron made the executive decision that the Sith Witch was not going to help our son. He called on his mobile phone, canceling all our future appointments.

We've all heard of the Wicked Witches of the East and the West. And good Glinda of the North. But we've never heard of the witch that resided in the South. Well, I've met her. The Sith Witch of the South lives. I do hope someone drops a house on her very soon.

Amy

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