Monday, May 22, 2006

What makes B tic...?

... just about anything & everything these days. There is no way of predicting what or when something will trigger the OCD "thoughts" & send B in a frenzy of shoulder-jerks, vocal explosions (the sort of noise kids make when they are "exploding" something while playing), & sometimes violent gagging noises. Although the tics are less frequent at school, B is engaging in other stress-reducing behaviours there, such as head-banging & ripping his fingers with tacks (for which we've put a pretty effective strategy in place that allows B to earn Pokemon cards for each tack or paper clip he turns in). When B & I went to see his psychiatrist last Tuesday afternoon, C had written-up a note summarising his thoughts about what we've been dealing with as a family for me to share with her & I really like how he phrased it (explanatory comments are mine):

We are working hard:
* Preventing emotional breakdowns ("Umm, umm"- this referring to how we cope with B when he's "stuck")
* Keeping physical safety (because of the head-banging & difficulty going through doorways, which leads to more head-banging, plus the tack situation)
* If I prevent head-banging he screams "You're killing me" (B did this at church a couple Sundays ago...)

He is working hard:
* Preventing emotional breakdowns (he's using his words much more than ever before)
* Tacks & fingers (he's been ripping his fingers with tacks in an attempt to cope with the stress)
* Head-banging (another attempt to control his distress)
* tics

Can we make anything easier??

Both C & I were not interested in raising B's medicine doses as a response to the current behaviours, since we felt that behavioural methods are still working, however, B's psychiatrist had some other concerns to share with us... As it turns out, B's recent blood tests showed that his triglyceride levels are rising higher & higher, which concerned her very much. She was planning to contact B's pediatrician about it & asked that we repeat his fasting blood test the next day, to confirm the results. In light of the increased tics, she strongly recommended beginning to transition B off of the Seroquel & onto Abilify
(aripiprazole), which is in the same family but appears to have no affect on cholesterol & weight-gain in those who take it. B had also gained 3 lbs. since our last visit, so I agreed that this is the time to start slowly making the change. We added 5 mg. Abilify (which we have to call "pip" in front of B because this name makes him tic...) to his morning medicines on Wednesday, to see if it will help calm the increased OCD/sensory overload difficulties. Until we know how it's affecting him we won't mess with the Seroquel... this kid still has 3 more weeks of school!

The main effect we've noticed is that it's making him sleepy earlier in the evening but then he's waking up much earlier in the morning... sigh. When we do things with him to keep him up 'till 9:00 pm he sleeps later, so it appears that we'll be able to manage this "blip". We haven't noticed much effect on "thoughts" & tics- although B is definitely getting better at telling us what's making him tic, which allows us to "pull it out of his head" & talk about it. For example, sometimes I'll ask him if we can change something in his environment that's making him tic & he'll give me a cagey "it would make things worse to remove it..." answer. Lately, he can tell me that it's, say, his feet that are making him tic (or his thumbs, or his left hand). I have found that talking about it helps- I'll hold the offending foot & tell him how great it is, & he'll start ticcing but soon calm down & stop entirely. He's also gotten better about meat & meat-like things (like veggie corn dogs) & that was the result of talking, too. I explained the balance of nature to him & that some animals might starve to death if they were not used for food, especially since so many of the predators have been killed by humans (OK- I know that this is not the most balanced picture & ignores completely the way humans often inhumanely use cattle & chickens as food animals, but my goal is to allow my kid to make a balanced choice about what he eats, not one driven by horrific OCD "thoughts" & fears... & yes, I am a vegetarian, but I still want this to be his choice & not something imposed on him). A couple of days later B told me that he thought it was good that humans are omnivores, & soon he was able to hear the word "meat" without ticcing, & eat his veggie corn dogs again.

At the risk of sounding looney, we've developed another way to help us all cope with B's constant & unpredictable tics... we've made a sort of game of it. It started one night at dinner when we were discussing what to make this past Saturday evening for a special dinner with my visiting aunt & uncle from Ottawa. I suggested lasagna, which set B off on a major tic attack (he doesn't like the smell of lasagne...). The next thing C mentioned also set B off, which struck us a funny (for some reason- maybe you had to be there)... so I started saying random things like "shoe" to see if B would tic. He got this sweet little grin on his face & proceded to tic no matter what I said, but they were obviously fake tics, whcih cracked everybody up even more.
We've played this "game" a couple of other times when the tics have been out of hand & it's diffused things pretty nicely. Go fig...

ETA: B & I saw his psychologist, Dr. M, today & told him about the "ticcing B off" game (that's what B called it :) Dr. M was actually delighted... he said it's a good way to diffuse the tics & their triggers... Go fig... :)

Plus, on the way out of the office, B told me that he saw another kid who he thought might have Tourette's... "I saw him ticcing, mom!" "It's nice to know you're not alone, isn't it, B?" "Yeah, it is!" :) :)


At 1:36 AM, Blogger Zilari said...

Yipe, it definitely sounds like the end-of-school stress is getting to B. :( But judging from how you described him being so happy and relaxed on the last break, I imagine things will be better in the summertime. I don't know if it would help or hurt to suggest to him that he focus on planning something really fun to do when school lets out, something that might help him feel like he had something to look forward to. (Or maybe something like this is already in the works?)

As for medication -- I know you've been very careful in researching and whatnot and are concerned for B's physical safety, but Abilify is another neuroleptic-class medication, and even if it doesn't have the triglyceride effects, the longer a person is on neuroleptics the more chance there is for long-term adverse effects. I'm wondering if these are really the only meds likely to help -- of course it wouldn't make sense to take him off his present meds right when school is ending (and neither neuroleptics or SSRIs should be withdrawn suddenly) but in the future it might be worth seriously looking into non-neuroleptic solutions.

Some people with Tourette's / panic attacks may benefit from beta blockers (such as propranolol), and these medications have also been associated with the lessening of the impact of traumatic memories (which might have some potential applications for OCD issues, but I am NOT a doctor -- it's just a thought). I know of a few autistic people who take Neurontin (gabapentin) for anxiety, panic, and / or seizures -- this drug seems to have a low incidence of side effects for a fair number of people and doesn't have the risk profile associated with neuroleptics. I'm wondering what B's psychiatrist would say if you asked about non-neuroleptic medications, or if this option has been explored.

At 11:21 AM, Blogger Wendy said...

My son bangs his head into the back of his high chair when I ask him to take a bite of one of his meals. It's the only time he does it but it's very distressing to me. I read somewhere that children who bang their heads do it so they know where their head is. Kind of makes sense because I always lay my hand on top of C's head when he gets stressed about something and it always calms him down. Just another piece of the puzzle...

At 8:01 PM, Blogger Lisa/Jedi said...

Thanks again for your input. Meds-wise, it's never a comfortable thing to have your child taking such a serious medication with potential long-term health implications. I do not see it as a permanent solution to B's problems, but as long as the OCD causes so much anxiety that it makes B have psychotic episodes we're going to have to live with it because he needs a life. Sigh. There are no easy answers here. I will ask B's psychiatrist about the medicines you've mentioned.

One thing they're doing very well this year at school is keeping the kids busy right up to the end. B is busy putting his research poster together & is very excited about it. He has been researching black holes, pulsars, & quasars... :)

Thanks for your comment. As to knowing where heads are :) B also has proprioceptor difficulties, which means that he doesn't know where his body is in space. After he outgrew his booster seat (with the seat belt) at the table & started sitting in a regular chair, he started falling out of the chair on a regular basis- sometime 2 or 3 times a meal! His OT at the time suggested that we get him a Swiss Disc cusion for his chair, which has worked fabulously. It gives him what we call "hiney feedback", meaning every time he wiggles, the cushion sends feedback through his whole body, helping him to know where he is without needing to wiggle so much that he falls off the chair. Head-banging-wise... we suspect that this is more of a stress-reliever, since we've had feedback from others with autism (such as friend zilari :) that this is the case. B only head-bangs when he's in distress (thankfully).

At 11:29 PM, Blogger Zilari said...

Yes, I'd definitely concur with head-banging being a distress thing -- one thing that really helps me NOT do it is just knowing that my head is the place where my brain is, and that my brain is, well, me.

At 1:38 PM, Anonymous alaneg said...

After taking the Abilify have you noticed gagging or vomiting as a side effect? My son has recently begun gagging to the point of vomiting. I can't find this as a side effect to Abilify or Lithium but I am sure it is the medication. The psychiatrist is unsure of the cause. Thanks for your help. Take care.

At 2:14 PM, Blogger Lisa/Jedi said...

Hi alaneg,
B never had the side effects you mention, so it's hard to know what could be giving you child this trouble... however, we had to take him off of the Abilify because of serotonin-overdose issues, so he wasn't on it for very long. Sorry I couldn't be more help. Good luck!

At 4:51 PM, Blogger Lisa/Jedi said...

Update on the abilify... B's dad, who is a physician, happened to read your comment alaneg & believes that the abilify is the culprit for your child's problems. He's seen this in adults, as well. Again, good luck!


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