Woodstone Prairie

…. what’s going on with the BCAA. Ok, my sister wants to know (but she has an inquiring mind…) so I thought I’d post a quick update, just in case anyone else is wondering.

 M’s pediatrician is still researching the BCAA. I should hear back from her today or tomorrow. She thought it would probably be a good thing to try, but wanted to read through the studies herself, and talk to some of her colleagues that specialize in sports medicine. BCAA’s are used by body builders, and the concern is that they might have the same kind of side effects you see with anabolic steroids… irritability and even rage reactions, and building muscle mass. Either of those side effects would make using BCAA a very bad idea…

Thanks for the suggestions for using a compounding pharmacy to mix and measure the BCAA. I may do that, although I did find that I can order a scale through our pharmacy (at wholesale!) and get it for just under $200. If this turns out to be a long term treatment (which it might…) it would probably make sense to buy the scale to do my own mixing and measuring.

So the BCAA treatment for the tardive dyskinesia is on hold for at least a little while more, but there is other news.

We saw Dr G yesterday… No, he didn’t have horns, or wear a white coat, have a humpback and talk with an accent. He didn’t even seem sinister at all! (grin) He is a soft spoken older gentleman, and was very good with Michael. (Although, during the appointment, I did shudder internally each time I thought of the tens of thousands of times he has administered ECT to someone.) He called before the appointment (even giving me his home number to call him back!) so we could talk a little without M, and he spent over an hour talking to M. I stayed in the room during the appointment and was impressed with Dr G’s patience with the funny questions M asks (”What’s your favorite meat?”) and the non-threatening way to asked Michael about his schizophrenia.

Dr G said something yesterday that really stuck with me. He said, in talking about side effects to both ECT and medications, “There is no side effect that is worse than the illness itself.”.  After thinking about it I have to agree… The terrible pain M experiences when he disconnects and the physical danger he is in because of the disconnect, is almost indescribable. Dr G’s comment helped boil things down to their most basic for me… nothing, not even TD, is worse than untreated (or inadequately treated) schizophrenia symptoms.

Our regular pdoc couldn’t wait to talk to Dr G, so she called him right after the appointment and then called me last night. She says it doesn’t sound like Dr G thinks M is a good candidate for ECT (which is good because we weren’t open to it anyway!), but Dr G did think we could safely add yet another antipsychotic medication, which should give us a much better chance of being able to lower or stop the haldol (which is causing the TD). I’ll start M today on the new medication, it’s one he’s taken several times in the past (so we know he can tolerate it), and in a couple of days I’ll try again to lower the haldol a step. If it works we’ll just keep going, cross tapering the two meds, until… if all goes well…. he’s off the haldol completely. When and if that happens we’ll have to wait and see if the TD goes away. There is about a 50% chance of it being permanent, but without the haldol at least it shouldn’t get any worse.

The appointment with the educational consultant went well too. We’re working on some ideas to build some structure into the late afternoon time of the day, a time when M is frequently unsettled and agitated, and…. after seeing how M reacted to being in her small office for the appointment (restless, edgy, kept trying to wander the halls of her office building)… she said she’d be happy to come to the house next time!

So yesterday was full of good news. I hadn’t realized how badly I needed to hear some good news until I got some and it felt like Christmas had come early. It’s a measure of how hopeless things have seemed lately that I was happy dancing all over the kitchen at the thought of being able to start M on another medication! Just having some hope again is such a good thing.

Today we are heading back into Denver to see White Christmas. It will be another long day, but both the kids and I love the movie and I can’t wait to see it on the stage!

I’d appreciate it if you could keep my friend L in your prayers today. She and her husband are meeting with social services this afternoon about the possibility of placing their 14 years old son (with autism) in a residential setting. It’s a heartbreaking decision to have to make and they could use lots of prayers. Thanks…

Oh… one more thing, before I forget. Note to family: I made another photo collage this year… If you would like a copy of it let me know. Here’s what it looks like: