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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 6 of 6. This is the beginning of the thread.
Posted by always_doing_laundry on June 28, 2008, at 17:08:13
Hi. I'm new here, looking for thoughts about my 16-year-old son, possibly tapering him from meds (abilify and zoloft), and when the best time (if any) would be to try it (based on other patient/parent experiences).
I apologize for length ... not sure what the guidelines are for this site.
He is dx'd with ADHD and on the PDD spectrum (originally presented at age 2 as fully autistic with echolalia, etc., but now shows more symptoms of sensory integration issues, poor social skills, repetitive habits, "odd"'ness, unusual obsessions/interests, over-responsive to some stimuli/under-responsive to others). He is high-functioning, especially on meds. He had early intervention, beginning at age 2, progressing from special education to currently only on a 504-plan.
We have a psychiatrist we trust and have worked with for the past six years, but we don't see her until school starts. I'm trying to gather experiences and opinions before deciding whether even to consider changing anything.
We are wondering whether he still needs the abilify, or if we could taper the dose; ditto with the zoloft.
I have read the horror stories about SSRI withdrawal. Additionally, he has paradoxical reactions to medications. I also know that it's easy to forget what it was like when he was crazy,...
... trying to run out the door b/c he worried there might be spiders in the shower; then afraid to go outside b/c there might be bees (first during the day, then night, then only during "bee season" then any season, lest there might be bees, then ever ... in case a bug that might actually *be* a bee in the long run comes out ... and might come near him); pooping in the urinals at school but refusing to use a toilet at home; having aggressive "fits" if something happened that didn't somehow jive with his internal system of how things should be; obsessively rubbing his hair off/pulling it out; rubbing his ears and sucking his thumb; daytime and bed-wetting; screaming at the odor of smells or switching clothes to a different season (transitioning from wearing shorts to having pants on his legs and vice versa ... ditto to wearing socks vs. sandals); etc., etc.
We easily see the difference that Concerta makes in his life, behavior, school-work, focus, etc. But I'm not so sure whether he has grown out of a lot of the other stuff ... or if it's medication keeping it at bay. The docs and OTs said that his having the experience of tolerating all those things would enable and teach him and his nervous system to manage them ... and that each new age/stage would bring growth (and new challenges).
We originally started the zoloft for anxiety (the bees, spiders, hair-pulling, etc.) And, I think, he is on the abilify as adjunctive therapy to that and for helping him overcome some of his odd ideas/beliefs about things. It has been so long, and he was started on them by a different doc, that I honestly don't remember.
We have been afraid to rock the boat and change anything, since he has been achieving in school; socializing to an extent that he just seems a bit off vs. completely standing out/weird; and because he now way outsizes me (and is stronger than my 6'4" husband), and if he decided to take off or act out irrationally, I wouldn't be able to do anything like I could when he was little.
I worry changing his cocktail could result in some kind of irreversible bad decision-making/behavior borne out of no meds/med withdrawal.
Aside from being able to save his body the pharmaceutical stimulation and save some money, he thinks he wants to enter the Air Force after high school graduation. His cousin, who also took stimulants and SSRIs, told him about having to go off of them in order to be allowed to enter. You can't be on any meds that require a script/regular meds. If that is the case, we would need to test and taper waaaayyy ahead of when he would be looking at going in.
Summer seems an OK time to try, except he works and volunteers ... and we don't want him to flip out, especially since he volunteers with children. We hate to try during school, because we don't want to negatively affect his academic performance or his school behavior. If he screws up in school, then it will affect his college eligibility (he wants to serve in the military to help finance a college education).
I know ... this is really long. Any feedback?
Posted by Racer on June 28, 2008, at 18:05:30
In reply to Teen on zoloft/concerta/abilify for ADHD/PDD, posted by always_doing_laundry on June 28, 2008, at 17:08:13
> Hi. I'm new here,
Welcome to Babble! I've gotten a lot of support and information here over the years, and I hope you find it as helpful and welcoming as I have.
> I apologize for length ... not sure what the guidelines are for this site.
>
> I know ... this is really long. Any feedback?Guidelines are pretty simple, although there are some civility guidelines in the FAQ that you might want to read over, just to help you understand. Mostly it's all common sense -- be nice to others, don't over-generalize, and so forth. And we really like "I statements" ;-)
As for length, the rule is basically to write what you think is important. No limits on length -- I've written novella length posts here, and still gotten answers. (Actually, that's the one point to make on the topic -- sometimes when I am particularly depressed, I can't read a full post. Some others here have made similar comments on some of my posts. But what you wrote here is certainly not in the running for "too long," and I think it's all pretty relevant.)
OK, your son...
First off, the SSRI withdrawal problems tend to be the shorter acting SSRIs. The longer a medication stays in your system, the less likely withdrawal is. Prozac, with a half life of about a week, is the longest acting of the SSRIs, with Paxil and Zoloft sharing a half life of about a day. Tapering down on medications is always a good idea, and in the case of the SSRIs, often a single dose of Prozac can ease someone through any withdrawal that does occur. Another advantage of tapering down, by the way, is that it's less likely to result in "rebound" symptoms. If your son starts to have trouble as he tapers down, it's easy enough to go back to a therapeutic dosage.
Changing medications is always best done one at a time. The fewer variables there are to consider, the clearer the picture which emerges. I think stopping the Zoloft first is the way I'd go -- but keep in mind, I'm a patient, not a doctor, so take what I say with a grain of salt, 'K? ;-)
You say that you can see a distinct difference in your son while on Concerta, but I'm wondering if maybe he's actually had enough behavioral and social experience now that it might not be as helpful as it seems? I admit -- that's a bias on my part, after working with a lot of kids taking psych meds. It's worth discussing that with his doctor, as well as what he thinks in terms of which meds to keep and which to try going off of.
Some say that one should always continue meds indefinitely -- that they won't work as well if you take them again, or that you'll certainly relapse if you stop. It's true that, for those of us with major depression, it's very likely that we will relapse -- especially if this is not our first episode. It sounds, though, as though your son was taking these meds for something else. In that case, especially since he's been going through so much growth during the time he's been on them, and has had such a good response to the interventions, I'd give it a try. And I'd start the taper sooner, rather than later, just because he may find that he feels better when he knows that it's HIM who's improved, and not the medications camouflaging his symptoms. Remember -- if it seems that he's doing worse, you can end the taper and go back to the therapeutic dose.
(Also a warning -- I get very OCD with meds, and sometimes get to where I'm obsessing about every sensation while going up or down on medications. It's important to give any med change some time before giving up.)
Best luck to you, and welcome to Babble!
Posted by always_doing_laundry on June 28, 2008, at 19:21:55
In reply to Re: Teen on zoloft/concerta/abilify for ADHD/PDD » always_doing_laundry, posted by Racer on June 28, 2008, at 18:05:30
Thanks for the reply, Racer!
I think the point you make about our son knowing what is "him" and what is medication, if there is any difference, is a good one. His cousin actually returned to his meds after he left the Air Force, because he appreciated how they helped him not be late, disorganized, etc. He share that with out son, and our son wasn't impressed. He hates being on meds and says they "don't work," but also that they "make him boring."
Reason we think Concerta helps: We don't even have to know that he has forgotten to take his meds, we can tell by his racing talk; talking over and past people/not waiting for replies; looking for his shoes in the fridge instead of where shoes are; forgetting homework; impulsive "blurting out" in class ... or anywhere, often not having anything to do with anything but whatever happens to be in his head; unable to complete tasks, including simple chores.
I had heard that abilify was easier to taper/test ... that it was more of an absence of any effectiveness vs. discontinuation symptoms. On the other hand, if it's the abilify keeping the very disruptive, inappropriate, big problems at bay ... then, it could be more problematic.
If we have symptoms from the zoloft, then withdrawal might exacerbate all of said abilify-buffered problems, and they would "break through" despite still being on that drug.
Which, I guess, takes me back to my circular thoughts about this. I think I'm just really afraid that he'll flip out or that he'll be like the autistic toddler that he was. I know that the most potent meds wouldn't "cure" is PDD, so that is more fear than reality.
Posted by bleauberry on June 28, 2008, at 19:36:17
In reply to Teen on zoloft/concerta/abilify for ADHD/PDD, posted by always_doing_laundry on June 28, 2008, at 17:08:13
I agree with everything Racer said.
Stopping longterm meds is not easy. The longer they have been in place, the more pronounced the withdrawals will be, and the longer they will be. There is no idea if old symptoms or new symptoms will show up. If they did, it is sometimes hard to figure out if they are withdrawals, relapse, or something new unfolding.
If you want to try, I would suggest weaning very slowly in very tiny incremenets. Get good at cutting zoloft pills because you would be wise to decrease dose in tiny chunks equivalent to roughly 5mg at a time. Same with other meds. If capsule powder, get good at emptying them, making piles of custom doses and reloading them into empty capsules from the healthfood store. Take very tiny steps. I do think the doctor should be involved in the decision process. As a general rule, doses should be reduced no faster than 10% per week. But with longterm use, I personally would make that 5% every two weeks. For an already fragile nervous system, the last thing you want to do is create trauma.
Not sure if the military is a realistic goal. If a handicap of any kind prevents us from pursuing a career we want, there are other roads than can turn out to be even better. Play on his strengths, whatever they are. I bet he has some kind of inherent talent or gift at something that makes him well suited for something.
I'm kind of steering off topic a little bit here, but not really. There is a growing body of support for the link between mercury toxicity and early childhood autism/psychiatric disorders. I wonder if you have/had amalgam fillings? The mecury is passed on to the fetus. I wonder if he was a case of mercury toxicity from the mercury preservative in most childhood vaccinations back then? In any case, a good percentage of these cases have improved significantly by undergoing what they call "low dose frequent dose chelation". If mercury is a player here, it is almost impossible to test for it since it has long ago hidden in the nervous system and will not be detectable in blood, urine, or hair. It is there for life unless purposely removed through chelation. Whether this applies or not, I have no idea, but wanted to share as most of the public and most doctors are unaware of the growing wave of evidence on this topic. If you have any doubts or want to learn more, just type something like "autism chelation mercury cutler archives" in a google search.
Posted by Phillipa on June 28, 2008, at 20:17:59
In reply to Re: Teen on zoloft/concerta/abilify for ADHD/PDD, posted by bleauberry on June 28, 2008, at 19:36:17
If he's doing well personally I would change nothing. Phillipa
Posted by always_doing_laundry on June 28, 2008, at 21:22:17
In reply to Re: Teen on zoloft/concerta/abilify for ADHD/PDD, posted by Phillipa on June 28, 2008, at 20:17:59
He's doing well ... very well. He seems nearly typical if you aren't around him in a more intimate/personal setting or don't have too much interaction. I *do* worry he will get lost in his obsessive interests (maps, the architecture of arenas/stadiums/etc., ditto racetracks, watching things spin -- indulged in an "acceptable" way, i.e., NASCAR -- he watches the wheels go round, not the actual race).
He manages his environment.
*He* really wants to drop the meds, but he doesn't remember what he was like. Except he saw old videos we took when he was younger (psych asked us to capture his "fits" to understand whether we were describing typical tantrums) ... he saw himself and what we had to deal with and remarked, "Good Lord."
I have caught him several times trying to ditch the pills but saying that he took them. I have explained that just quitting could be dangerous and would, at least, leave him feeling sick or bad. He says that wouldn't happen to him, b/c he doesn't respond to meds the same way others do (true, sometimes ... not fazed by valium prior to dental procedure ((hyped him up)), no sleepiness with hydrocodone for post-surgical pain, no pain in having impacted wisdom teeth yanked with only topical numbing ((but make him wear scratchy jeans, and he'll run screaming)).
It feels inevitable that he will eventually try to wean himself, with or without or help/consent. It may be that we talk with the doc together, plan to continue meds until he is of age, and then agree to support him if he wants to try weaning at that point. If he doesn't experience untoward effects, then great. If he does, then he can make an informed personal decision.
((Regarding mercury toxicity: I don't have/have never had any fillings ... never had a cavity; he has only had one dose of vaccine, as he is highly allergic to eggs, and the MMR, for example, is in egg albumin; he probably has a genetic tendency, as my father demonstrates some unusual quirks/personality traits; and he experienced depressed heart rate for a period during birth/delivery due to being stuck in the birth canal in an atypical presentation))
This is the end of the thread.
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