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Still Awful, Prognosis for Upswing

Saw Dr. McCracken on Friday. He admitted Stink’s tics were waaaaay up.

Four possible scenarios according to him:

1. He’s allergic to the pills (they think it’s likely a placebo since his blood pressure is not lower nor is he tired.)

2. He’s just experiencing waxing

3. He might have had strep throat 3 weeks ago and we didn’t catch it. His immune system could be shot to pieces. Today I will take him to urgent care and have his throat swabbed. It’s happeneed before where he presents no symptoms but has strep. It’s always fun to explain this to the nurse on call: “My son needs a throat culture… why, no, he does not have a sore throat… no, I am not an overbearing mother who has lost her marbles but yes, I will sit on you and make you beg for air if you DON’T DO THIS RIGHT NOW I’VE BEEN LIVING WITH INSANE TICS FOR 2 WEEKS JUST DO IT!!!!!!!!!!

4. He’s hyped up from State Testing

I’m going with #1.

There is always the fifth scenario

5. He is allergic to everything I am giving him, including the smell of my armpits, the un-organic apples I am buying because it’s not in the budget right now to spend $199/week at Whole Foods, the bird that visits us every day is crapping on his head causing neck rolls and eye twitches via bird turd absorption, he is allergic to my bad jokes and awful hair that hasn’t been dyed in 7 weeks or he’s just in that pre-spike Tween upswing of tics and I’m going to have to live with vocal tics blasting out 40 times a minute (no joke) until he sprouts pubes and goes to college.

Oh, it’s all so exciting! Thank you to my mom who took Stink overnight last night. And thank you to Vickie who took my daughter overnight. And thank you to Topanga T and Big B who showed up at my home with their two bulldogs. They brought expensive IPA, grilled shrimp wrapped in bacon, shortbread cookies and chicken salad. While I took a half hour breahter at a thrift store after dropping off the kids, T cleaned up my house. My husband bought me Starbucks. I love everyone. I really do. Even the tics!

* I bring this quick edit to thank Ellen and Martina for taking both Pip and Stink on Friday night so I could go to dinner with Rex. And thank you to Daria for playing backup. God bless my community of amazing women. I swear, more frustrating than tics would be a world without strong women who have my back. Please get yourselves a strong group of people in your lives – in any form (church, temple, school, whatevvvvaaah) to get you through the rough times and to sing with during the good ones. I could say I’m lucky – and I am – but I also work pretty hard to sustain this. I’m there for others and they are there for me. It’s the best gift in this life ever.

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About Andrea Frazer

Find me at www.happilytickedoff.com! I'm a produced television, magazine, newspaper and national blog writer available for freelance writing in the areas of faith, parenting, lifestyle and healthcare. In addition to ghostwriting and content creation, I am proud to be publishing my first book. Called "Happily Ticked Off," it is a humorous mom-moir about raising a son with Tourette Syndrome. I can best be described as Erma Bombeck meets Nora Ephron. I live to connect with others through writing, authenticity and just a wee bit of sass.

16 responses »

  1. Allergic to a sugar pill? Well, wouldn’t you just like to know what they are putting in the placebo pills?

    I’m going to place my vote for #4, if we get to vote. ;-P State testing is brutal.

    BTW, Trader Joe’s sells large bags of organic apple slices for about $3 a bag. It’s a really good deal.

    Reply
  2. Andrea Frazer

    @Christy – Of course you get to vote. I hope it’s #4! Then it’s only 1 time/year I have to deal with this. Apples @ TJ’s – I always get my organic apples there. The past few weeks they have been out – at least at ours. Maybe you can pick me up a bag next time you are yours!!!!! I will repay u of course.

    Reply
  3. Yup…voting for #4 too!! Although…you might have arm pits that reek like $3 apples…some moldy gluten/taste free bread…topped with ..organic…smelly goat/blue/provolone..foot cheese…..I am betting the testing…and end of year..crap…..etc…is whats doing most of it. In the meantime….get yourself some good deodorant(not the TJ organic stuff….hard chemicals work better!)…grab some vino…..and take a break when needed. Got your back……..you’ve always had mine…….

    Reply
  4. We are exploring the GAPS diet and some other food related possibilities. The funniest thing about the food related elements is the wide swing of opinions you get. One group say’s to stay with all animal fat until the gut is healed and the next tells you to stay away from all meats. Anyway, after hearing and reading enough success stories with TS, Tics and Autism, we have decided to take a leap of faith on the GAPS diet. The kids are about as happy about it as an Eskimo at the equator. It has been rough, but still trying to stick with it. We have been doing it for about 5 days and must say that we have seen an overall decline in the tics. We may go see a Homeopathic center this week that claims to be able to remove the issues completely. Happy to keep you updated if your interested. Good luck on your side, sounds like you are making the best out of the situation.

    Reply
  5. Andrea Frazer

    @ Karen – Part of me wishes it were strep rather than testing, because at least there is a pill for that. Still, he’s such a good sport, so really, who am I to complain? I will have someone with T.S. writing in this week. We’re going to see it from her angle. So important to have perspective.

    @ R&L – Thank you for your research on this diet. I did a little bit of checking up on it and it seems extreme. I’d be concerned about doing yet one more experiment on Stink. I’ll be curious to see your findings, though. The whole gut/food sensitivity/toxin thing makes sense as to why it might trigger tics. Looking forward to our Q and A this week. Will email you.

    Reply
  6. My kid is also off the charts suddenly, which is why I came over here. Over the weekend he started doing 5 separate things in a super high frequency cycle. Maybe it’s this head cold/sinus thing that’s been going around? I went and got a strep test for kid, and no dice. But our whole family was felled two weeks ago and I still have a sinus infection.

    My kid I think is more towards Anxiety/OCD. He does this stuff to defuse stress (I’m pretty sure…). But from what I’m reading all the triggers are the same (diet and the rest).

    So for me, the options are:

    1) (genetic short term) Seasonal/illness
    2) (genetic long term) He’s hit the age where the symptoms flare
    3) (parenting environment) I started doing my version of CBT and super-stimulated him instead (started 5 days ago in the midst of a major upswing, and now it’s amazingly worse).
    4) (parenting environment) We are all suddenly crazy anxious around the house because we’re worried about him, and he’s trying to cope with our toxic mental environment. For the record, we don’t think we’re behaving that way, but really can we know for sure?
    5) (school environment) He’s always done badly at schoolwork and now suddenly he’s smoking through it. The stress of focusing on school is causing him to emotionally melt down.
    6) Some kind of combo.

    Since I’m also in LA let’s assume it’s the season for weird crap in the air, or it’s that sinus thing that went around, and it just happens to be the right type of body stressor.

    Reply
  7. Andrea Frazer

    @ Je – It’s weird, isn’t it? I sort of hope it’s not seasonal allergies. I mean, every year we have to go through this? Really? Sigh… I’m sorry about the OCD. Any luck with the Seminel Institute @ UCLA? Also, have you heard of Brain Balance? Curious.

    Reply
    • We went and saw a fancy pants expert yesterday who knows our kid pretty well and the overall points were that the kid is fine, though cautious, and if there is a problem it’s probably us (said more roundabout). The only issue is the expert hasn’t seen him in the last two weeks, and wouldn’t look at the video I had of kid going on a super-jag. So hubs (who is a worrier) is now happy, and me (not usually a worrier) thinks the guy we saw is too busy.

      That being said, kid IS much better now. So we’re down to 1, 3, and 4. (or combo). 1) All of us stopped having green snot yesterday. 3) I do think I did the CBT stuff wrong and caused a big upswing. 4) I think our household is generally stressed and our kid is a hyper-sensitive barometer to it (by stress I mean we have too much going on and are focused more on how to get all this crap done as opposed to joyfully living our life, an aspect of this blog I most appreciate. I think most people would think we don’t have a stressed household, but I think most people aren’t hyper-sensitive like the kid).

      So hubs thinks kid is now fine because kid for 36 hours isn’t doing behaviours hubs noticed, but hubs doesn’t notice new repetitive behaviours (kid is taking 4 deep breaths, holding his hands flat to his thighs, and angling his head slightly to the right, and he does this when he misspeaks, gets a math problem wrong, or makes any sort of error). Since I haven’t pointed any of this out, or brought attention to it, at least I know I’m not the origin of this new behaviour. It’s at a third of the repitition compared to the weekend.

      So as far as UCLA and Brain Balance, I don’t know what I’ll do. Maybe all the experts who kind-of know me are right and I’m creating a problem where there is none. But I have a gut feeling the kid is sensitive/anxious, and struggling to cope. The issue is I think I’ve spent so much time making sure he’s also brave, and self-loving that people think “He overcomes fears! So he’s not anxious!” “He doesn’t hit kids, so he doesn’t meet criteria!” I mean, clearly he wouldn’t do these repeititive behaviours if something wasn’t bothering him, and clearly this is his current preferred method of coping. Since it enables him to do what he wants/needs 70% of the time does that mean it’s all good?

      I’ll just take it day by day.

      Reply
  8. Andrea Frazer

    @ Julia – I am glad your son is doing better! Your husband sounds lovely and concerned but able to be objective also. Your son seems to be very very together.

    Here is my two cents for what it is worth. I am no doctor, so take it all with a grain of salt and get back to me if you agree or not. A lot of folk could really benefit from this discussion.

    It seems to me that you, like myself, are very “on it” parents who want the best for our kids. You wouldn’t write insanely detailed and long comments (which you probably typed at a flurry of 90 words/minute in under 15 minutes) if you weren’t very passionate, bright and wanted the best for your kid.

    Me? Why would I write a book or keep this blog going 5 days/week if I didn’t want the same?

    That said, you and I do have to be careful not to create a problem that isn’t there. I have never seen tics or behavior so bad in my son since when I started the UCLA program. Of course I would not have known that this was the wrong route had I not tried it. I’d have been second guessing myself every time a round of tics came on. “Should i try meds? Does some big wig psychiatrist know more than I do about my son?”

    You wouldn’t have known how your child would be affected if you hadn’t done the CBT. (Behavior reversal training for Tics)

    To give both of us some credit, our kids tic and are sensitive. It’s not 100% us. We could be saints and they would still tic. And frankly, I don’t think we’re doing so awful.

    What we need to do, which parents of NT (neurotypical) kids need to do is BACK OFF. We can’t make our childrens’ lives perfect. In fact, by giving them everything we think they want (in our cases, tic free lives with no anxiety) we are setting them up for failure. “Normal” kids have anxieties and problems. Parents of these kids enroll them in thousands of classes to make them shine. They shop for them and cook for them and give them religious training and self-help books. They want them to be okay so badly… they want them to shine so much… that they take on every little hurt and fear and try to erase it with a sort of fear based mentality. “If my kid is an athletic guru and can speak 2 languages before 10 they will go to Harvard and not have problems.”

    Let me tell you – those “perfect” non-ticking kids have perfection complexes a mile wide.

    I have an NT kid myself. I want the best for her. She is amazing and brilliant and beautiful and my world revolves around her. But she is not going to be perfect. I can’t make her life that way. She can’t do every show her friends do because the time and income with other things in our lives can’t afford that. We’re going to back off this summer and she’s going to do vocal training and theatre at the local Y. That’s okay!

    My point: YOU ARE GOOD. SO AM I. SO IS EVERYONE ELSE WITH SPECIAL NEEDS AND NT KIDS.

    The best thing you can do for your baby, and me for Stink and my girlie, is to love them and give them self-confidence to deal with all the yuk that comes with a very messy life, tics or not.

    Thoughts?

    Reply
    • my three cents…not that they were asked for…but take it for what it’s worth =o )

      First…I agree with Andrea….

      Second: i am not a doctor nor am i a parent or psychiatrist….but i think parents need to relax. parents want the best for their kids….they spent 9 sometimes 10 months cooking them and then caring for them and making sure nothing happened to them….and then they (the kids) learned how to talk and by then it was too late to return them for a newer model…wait no that’s not right….relax yes parents relax it will be ok….it’s not about keeping up with your neighbors, or getting all A’s, or never failing at anything…actually it’s the kids who do have everything handed to them and are shelthered from failures that have the hardest time as an adult…It’s about loving and supporting your kid and giving them confidence and the ability to be comfortable in their own skin. There is no such thing as perfection so why do we all work so hard trying to achieve something that doesn’t exist? In the words of my biochem professor….don’t go hunting zebras in Scott County (Iowa)….chances are it’s horses…

      Reply
  9. Andrea Frazer

    @ Lisa – You crack me up. Thank you! Love your quote. I am going to use it in my next blog.

    Reply
  10. Pingback: Wabi Sabi – No Such Thing As Perfection « Happily Ticked Off

  11. I do think the most important first steps you can do (with any type of kid) and yourself is the hardest/easiest stuff: 1) Good diet 2) Fun outdoor activities that get the blood pumping (your daily dose of exercise.) 3) Living a meaningful/joyful life (live life).

    Doing those three things is 90% of what you can control and has been proven to make everything better in life for everyone (autism, anxiety, concentration problems, diabetes, all of it). And almost none of us get around to doing it because even though it is simple and straightforward, it’s SO HARD.

    The truth? What we all want is the ability to do the things we love, and productive coping skills for the things that we can’t control.

    And Andrea, what you are saying about trying to make life perfect for our kids (or trying to help our kids be perfect) is very true. That goal is counter-productive, not reasonable, and can make everyone unhappy.

    As has everyone, I’ve had experiences that weren’t solvable. Bad rolls on the luck dice. And unfortunately being on the wrong end of statistics isn’t helpful when you need to be rational about how bad problems really are (and can get).

    I have family who does nothing but take care of kids who go to the E.R. with severe life-threatening brain injuries. They have some interesting coping mechanisms now.

    With the CBT thing, I started asking my kid to cope cognitively and he’s not ready for that (to intellecutalize his fears). A real therapist would have known better. Which is why I shouldn’t be messing around on my own. The good news is, the upswing in repitition is now on a downswing. So no lasting trauma!

    I know they have play therapy/behavioural therapy, and that’s what they do for very young kids. More appropriate. I’m not familiar with how it works. Though I think there’s something about causing stress, and then demonstrating a coping skill.

    Regardless, the kid has some very unhelpful coping mechanisms right now, and there are two things I could do that would be harmful long term 1) Cope for him (make his life perfect, be his answer to every problem). 2) Undermine/Traumatize him (tell him there is something wrong with him i.e. he needs to be perfect, undercut his sense of self-worth, ask him to be something he is not).

    So your mantra of “the wisdom to know the difference” is what I need. What can I/should I control? The 1,2, 3 above. As for 3, I spend too much time analyzing life, and as a family unit we spend too much time on “this work has to get done.” Balance. Balance in all things.

    That being said, I think I still need a therapist. Maybe just for me. 🙂

    Reply
    • Don’t normally comment on this stuff but here’s some ideas….

      Not sure what age group we’re talking about for young and play therapy…but a lot of times with smaller kids books are read, where someone/thing in the book experiences something and then they cope with it. Play therapy is definately big. Another thing is role playing situations. You can come up with a situation (or something that happened) and talk about it and then come up with possible solutions with the kid (age appropriate) and then practice what the child came up with….if it’s more behavioral…sticker charts work great with rewards that can be earned….as well as sometimes just ignoring the bad behavior (unless it’s harmful or unsafe) and focusing more on the behavior that you want to keep around.

      once again…not a mom not a therapist =o )

      Reply
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