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UCLA, Meds and Tarzan – Oh my!

My apologies in taking a while to follow up on this blog. I started slipping into a black hole had a lot on my mind after last week’s big UCLA follow-up.

To keep it simple, here’s the high lights, which led to my low lights, but now I’m seeing the light at the end of the tunnel, so let’s roll it on out, shall we?

* Doc thinks Stink is a super well adjusted

* Doc doesn’t think meds are needed for tics – which doc finds mild to moderate (thank you, Tarzan, go bloody die… yup, it’s back worse than before now, if that is possible?)

* Doc says that since Stink is well-adjusted socially and doing well academically, there’s no need to medicate. (Apparently “Warbling Drives Mama Batshit” does not a prescription for Clonodine make)

* Doc sees a bit of obsession going on with Stink’s Mario talk (really? so glad I’m paying the big bucks to figure that out)

* We have the option of having Stink tested for free at UCLA for an actual diagnosis of something other than T.S. – Be it ADHD, High Functioning Aspergers or whatnot

* If Stink qualifies for Aspergers, he can start an 8 week trial through UCLA where they will put him on Intuiv and monitor his blood pressure/reaction on a weekly basis

* Of course, this is a blind trial, so Stink might just get a placebo which means we’re driving in 2 hour traffic each way for a sugar pill which is kind of not really on my gluten free/caesin free/food dye free/eat everything that tastes like ass diet

* And then there’s the issue of Stink’s blood pressure often being being 85/55. With Intuiv’s side affects being to lower blood pressure, I’m taking a chance that Stink will faint, black out, or perhaps just not get up easily in the morning. The idea of not playing the Wii is appealing, but mind altlering drugs is not really the route I want to go if given a choice

Big Beefs In No Particular Order  (Organic big beef if possible, please)

1 . I am not against meds if they are needed. I take some for anxiety myself

2. I am not in denial about my kid’s issues, hence my cooperation with the I.E.P., taking him to a counselor last year, seeking out a UCLA specialist

This all said, let me go with #3 now…

3. I don’t feel, in my gut, we have done everything we need to do to avoid meds. He was doing fine before we went down to one acupuncture session/week. He was also doing better before we started in on the Wii and that damned Mario.

There is sooooooooo much research out there about dopamine flooding our kids brains. This dopamine can cause tics. It can cause the the executive function portion of their brain to get fuzzy. They lose impulse control. They show signs of ADHD. They obsess over games. Before I get my kid labeled as a high functioning autistic kid (and no problem if that’s the case)… and before I get him diagnosed as ADHD… why not take out the one thing that is triggering all this stuff in him as well as add back in acupuncture?

I really, in my heart of hearts, don’t think he has this Aspergers. I think he has tendencies toward obsession and the electronics needs to go.

Tell me, readership, would you take away the Wii before going down drug highway or do I just have my head up my butt? I really want to know. I really do.

Who out there is completely electronic free and why?

Here’s a book I’m reading now: Failure to Connect: How Computers Affect Our Childrens Minds And What We Can Do About It.

I’ll let you know how it goes next week.

Meanwhile, check back in a day or so for my review of David Finch’s best selling book The Journal of Best Practices:  A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Become a Better Husband .

I’ve emailed back and forth with this amazing writer several times. He was diagnosed when he was 30. He went from having a marriage in the toilet to the union he always wanted. Finch did the best with the cards he was dealt. Don’t we all want that for our kids? To know, truly, what is going on and do the best we can?

Talk to you soon.

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8 thoughts on “UCLA, Meds and Tarzan – Oh my!”

  1. Don’t know if you’ve tried this yet, but have you seen a cognitive behavioral therapist (CBT) for the OCD? My son has TS w/comorbid OCD and the CBT helped a lot with his obsessive thoughts (thoughts about always having to hug a particular kid in class, counting to 14 before doing something, having his dinner glass at a particular place on the table, etc.)

    He is also on Tenex (guanfacine, same as Intuniv but not time released) and that seems to help.

    Take care!

  2. Okay, get out of my head!! We seem to be one step behind you, Andrea – which is excellent because now, a month and two days before my son’s first doctor’s appt to address his anxiety, obsessive mario soliloquies, and mild tics, i’m thinking I should cut out all electronics so I don’t get a diagnosis that is a bit skewed and label him for life for no valid reason. He was punished for a week without ds and wii and was a completely different kid. I don’t think he has aspergers, just a few mild tics and major anxiety, which is the reason we’re seeking help, but I know he’s going to be labeled with aspergers because that’s the diagnosis of the week. Now, how do i break the news that he’s cut off for a month? Pass the Zoloft indeed.

  3. @ Mom Meets Blog – No, we have not yet seen a behavior specialist or tried CBT. I’m open to it. The main issue we have always had is that so far his tics aren’t bugging him or really anyone (other than me). Though he does need to control some of his impulses – interrupting, talking about what he wants to talk about, etc. We might do a class at UCLA. But again, this brings up an issue of overkill. Why am I always going above and beyond to groom this kid when other folk without TS issues see “developmentally appropriate” issues in their kids and don’t think twice about it? Am I making sense?

    @ Joy – Let me know how the Mario thing goes. I told Stink this morning that we are not doing it on Fridays anymore. We are down to Saturday and Sundays for 2 hours each based on good behavior. I told him it will likely go down to 1 hour each day after that. After that, we’ll see. I just want consistency. I’m tired of having to take it away, give it back, etc. Keep in touch! Love to hear your and everyone else’s stories!

    1. You are absolutely making sense! The waxing and waning nature of TS (and that it may become worse once puberty hits) always has me on red alert and wanting to have all the tools necessary to address whatever comes up (if it comes up). I got a call from his teacher last week that his whistling was starting to become an issue (it’s a thought he has to act on, and it won’t go away until he whistles – loudly and alot). He’s been addressing it by being aware as soon as he’s doing it, telling the thought to go away (he admits to be lazy about this) and putting a piece of gum in his mouth to distract himself from whistling. I know it may sound crazy, but it works for him and he’s been able to get it under control. It’s the unknown that keeps us on the hunt for answers.

  4. I think a two week electronic ban is a good trail run. Take it away..two weeks….see what happens. I don’t think it is realistic to think you can ban it forever though.
    That being said…..I have banned TV for 2days here……but more so because it seems “Stevie Wonder”(tic) just loves TV!

    karen b

  5. Against my better judgment, based on what I’ve read about tics, we bought my son a DS for Christmas. We have no other video games in the house and my husband convinced me that he needs to have the same cultural references that the rest of the boys have. I gave in with the caveat that there would be very limited game time allowed.

    Surprisingly, to me, anyway, we’ve not noticed any extra tics. In fact, until the last few weeks, the tics have been relatively quiet. I have no idea why the most recent upswing began, but, in our case, I don’t think it’s the game because it’s been two months of relatively low anxiety, OCD and tics. Two blissful months.

    I don’t know what I’d do in your case. If I honestly thought it would make a difference, I’d cut it out to see if it made a difference.

    1. @ Gwen – I thought that about the Wii also. But then it caught up to him. I think it’s the Wii anyway. Regardless, I’m glad the DS is working out for you. I hope it continues. Not every kid is affected teh same way! Glad to hear from you.

  6. We were told to lay off the computer. My son likes to go online to read and hear music. Yes, I do feel that constant use of the computer affects him. I haven’t limited it. Now he has an iPhone. Yes… he’s always on it. He doesn’t play video games. He lost interest back when he was about 7 years old. I do remember that he would have bad dreams after playing them. I have noticed that if I keep my son doing something that he likes to do he’s not so interested going online. It’s hard for a teenager because that’s what it is all about. Going on FB, etc. is part of their social life. He knows what he has to do when his tics are strong. Epson salt baths and lay off the caffeine. When his tics/OCD erupted… and I say erupted… he had this whistling vocal tic. I started doing the elimination thing. He loved Splenda and that was a BIG cause of his tics. We haven’t tried the meds. Not sure if he ever will. BUT we do have a doctor’s appointment to see a neurologist this month. We’re not looking for a cure. Well… for me … not anymore. I just want to ease the tics and OCD. He’s accepted his TS. He’s way cool about it. He does suffer from anxiety at times and with that… he feels like he can’t talk.. express himself. The good thing with him… he’ll talk about it. I still have hope that one day we will find something solid as to why this all happens. Stay strong.

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