Sorry about the delay. I had a bad head cold and I wanted to be sure, also, that I let my family and friends know the deal before blabbling my personal biz all over the web. (I know... hard to believe I have any shame when it comes to airing my kids' laundry, eh?)

Here's what happened at UCLA last week with Big Wig TS doc. I'd love to know your thoughts!

First off, we hit traffic, but not too much. We made it in plenty of time. Thank you for your prayers.

We were there for 2 hours 15 minutes. Doctor McKracken is super super laid back and quite handsome (if I do say so myself.) He spent the first 30 minutes talking to Stink, Rex and me - getting to know us. He didn't say much or show much reaction. He let all of us do the talking! (And yes, Stink did plenty of talking, including his first question of "My mommy says that the D.S. makes your brain shrink and I want to know if this is true or not!")

He spent the next hour talking just to Rex and me about everything from Stink's birth, developmental milestones, social interactions from 0-  now, etc.

He then spent 20 mintues talking to Stink alone.

Then he spent 20 minutes with alll three of us.

Then he spent the rest of the session with just Rex and me.

He had already read through the 50 pages of school paperwork to get an idea about how Stink's focus/tics are affecting him in class, but after meeting with us all that day he decided that he still didn't have all the info needed on Stink to make an accurate game plan. He wants more detail on what the school thinks about Stink's academics/relationships before any solid plan is put into play.

With this in mind, he wants to set up a 2 hour meeting with just Rex and myself in a few weeks once he gathers more info.

Based on the meeting we already had, though, his initial thoughts what the upcoming 2 hr. meeting will address are the following: (And he put the topics in order of most important)

1. Stink's tics and focus: 3rd grade is a game changer. If we don't get on this, he could lose out in the future. The doc said we will discuss different kinds of med options. He knows meds are my last option and is willing to talk neuro feedback or other forms of more natural brain balance.

2. Behavior issues: "Nipping at the heels of #1" (as he put it) is Stink's social interactions. While Stink is not mean in the slightest, he is impulsive. He interrupts and is oozing out the ears with high energy which causes him to go on and on with his language and be a bit oblivious to others' needs. This is starting to cause a wee bit of annoynance to his classmates who are maturing beyond their own world and being more aware of those around them. He is not convinced of aspergers but is also not the doc to diagnose this anyway. That would require more in-depth testing. I'll see what the school psychologist says on that end. (Not that a school psychologist can officially diagnose anything, but you'd have to be a blind dumbaxx to not know what they are referring to when they say your kid needs to be treated with x measures based on y symptoms. If x walks like an Aspie and talks like an Aspie it likely is an Aspie. Do I think Stink has it? Not really. He's far too social. He's less "not aware" and more "I don't give a shit" which leads me to the following note:

* My personal side note regarding kids and self-awareness: Kids in 3rd grade are also starting to become self-aware in a not so great way. It's not just out of their self-less good nature that they are aware of others and want to protect others' feelings. They are starting to become a bit of that "I want to fit in and not make a fuss so others like me" type people.

Stink isn't one one of those. There's not an ounce of insecurity in him. I'd hate to drug him up so he can fit into a mold of a boring trend setter. I don't think the doc wants that either, which is why he wants more time to decide if Stink is having occasional dork social issues or if Stink is just exceptionally "who gives a crap what anyone thinks I like myself" which can't be bad. (Though the doc did lean toward the importance of being aware of others' needs which is a big "duh" on my end. There's just a difference between being "aware" and "bending to the status quo" when really, do you remember grammar school? Is the status quo really what we want for our kids? Did that work out for all the big thinkers of the world? Enough said on that point.)

The doc also mentioned a social class that meets once/week at UCLA for "kids like Stink" called "Circle of Friends". It teaches kids to pick up on social cues more. Maybe that alone will be enough before we go to drugs? We'll have to see.

3. "Waaaaay down the list" from 1 and 2 but important enough to make the list are the tics. Stink was ticking through the whole meeting. It's obvious he tics, but they were what we'd call "mild" that day. (Shocking given Halloween the day before, but there you have it.)

The doc is not inclined to consider anti-tic meds since Dom "loves his tics and does not want medication to make him tired."  The doc is concerned about the tics for the same reason as #2 - at some point socially they might become a problem for Stink. Or they could affect academics if they get worse. But still, since Stink is comfortable now with the tics, he figures it's best to approach meds from a focus stand point. The right meds for focus could very well calm Stink down, which would help calm down the tics anyway.

In closing, and this was the most shocking part given the doc's disposition which was very calm and not all that expressive, he ended the meeting with a soft smile, saying that Stink's case is very manageable. He finds Stink to be a very bright, funny boy who is wired for happy. With the right plan in place, there is no reason whatsover that this kid won't go on to live not0only a happy life but an extremely successful one.

Yeah! I knew that, but to hear it from someone who deals with this disorder just took a HUGE weight off my shoulders.

More tomorrow. I hope the best is going on for your kids also and know that a blogger in L.A. is rooting for them and for you!

* pic taken of Papa and Stink on the way into our big meeting at UCLA
 


Comments

Gwen
11/08/2011 16:42

Thanks for the update.

And sorry for the slap. Although apparently it was a necessary evil in this case. ;)

I have skimmed many of your older posts but do not recall if this is the first time you have been to a neurologist or just the first time you have been to this one. We are still debating a course of action (aside from diet which we've been doing for two months with the second month nearly tic-free and then, well, "Tic or Treat", indeed, so we're back on the wagon) so I'm culling info from wherever I can get it.

I do appreciate your blog. I have put myself on hiatus from nearly everything else tic-related for now, because I can come up with gloomy scenarios on my own and I don't need any fuel for that fire. What I need to concentrate most on is accepting things I cannot change, changing what I can and the wisdom to know the difference, and your blog is a bit of a virtual bitch slap in that direction for me. (Although, with apologies to the writer of the prayer, in the interest of brevity, I use the Frank Costanza version "Serenity Now!")

So, I'm working on acceptance. It's the "what can I change" part that is still unclear to me.

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andrea frazer link
11/08/2011 20:37

@Gwen - Yes, I need the bitch slap. And look! One slap made two more posts pop out! Ya wanted one kid? Well ya got triplets.

After 5 years, this is indeed the first time we have seen a TS person other than the neuro when he was diagnosed at 4 and left us with the options of "medication... no cure" which, obviously, sucked.

Dr. McCrakcen is not a neuro but a psychiatrist. He was great.

I understand the lack of knowing what to do next. It's the uncertainty that we mamas must find serenity in. We can't wait for an answer because, as you know, life doesn't always present things in black and white.

sounds like the diet is working for you! Sounds like you are on a great course.

HOw old is your little dude? ARe you considering a naturopath? How are you holding up yourself? You sound strong. But then again, what do I know. I can sound strong, too, but sometimes I'm dying on the inside. But not lately. Which is odd.

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Gwen
11/09/2011 00:26

We are considering an environmental doctor. I attended a Tourette's support group and got info on which neurologists were well-regarded and which to avoid, but the general consensus was that it was pretty much a wham, bam, thank-you ma'am appointment with no real satisfaction in the end. i.e. Yes, he has a tic disorder, here's some info, we can medicate if it becomes debilitating, see you next year. And, really, what is the point?

So I put it off. And put off the environmental doc because it will be out of pocket and I was waiting for my husband's insurance to start over for the year so I could load up the FSA first. And then the tics subsided and I rethought the whole thing -- maybe standard allergy testing (covered by insurance) and then go from there. Maybe see our family practitioner, because what about PANDAS (even though he hasn't had strep that I know of). But the honest truth is that I put it all off in hopes that, at best, it was a passing phase that we were seeing in the rear view mirror. Or, at worst, it's an allergy that can be controlled with diet and not in need of further diagnosis. (Yes, I know...)

So, of course I hope the diet is working. But I also wonder if it's not coincidental and Halloween just happened to corresponded with the natural waxing and waning. I really have no idea and not enough data to make a determination. But along with the Halloween candy frenzy, he had two bowls of chowder (okayed by me as part of the verboten food free-for-all) and some chocolate milk at school (not okayed by me, but he thought it was). So maybe the dairy triggered this latest round. We're off of it again, anyway, and we'll see where that gets us.

The most disconcerting thing about this, that has me wanting to do something, NOW, is that some tantrum-type behavior -- the likes of which are not seen outside of horror films involving demons -- shows up before the tics kick in. As in, if I lived in medieval times I would hie him to a priest for an exorcism. It is shocking and upsetting and other than riding it out, I don't know what to do about it. Aside from this, he has no other co-morbidities that I can ascertain.

He is almost 8. We were pretty much gobsmacked when the first major tics started this past June. He'd make some minor weird noises here and there up until then, but we'd tell him to stop and they'd go away. Regular childhood quirks, we thought. Nothing we'd even have considered mentioning at his well child check-up a few months earlier. And then, boom, our lives changed almost instantly, and here we are.

Anyway, that is the back story. Sorry for the disjointed novel. I don't feel strong at all. At some point I decided I could either laugh or cry about it, and I chose to laugh. The less uptight I am, the less affected my son is and that is what matters, even if it means I am sometimes barely managing the smile. I am working towards acceptance, though. Serenity Now!

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