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PeterPan

What happens if you take Strattera longterm?

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Do you end up needing more meds or needing to go off later? And is it kind of XR or does it result in cycling or the bounceback when it wears off? Any stories of success/failure?

I've been trying to give ds teeny tiny amounts of sudafed. He's not a candidate for anything that raises dopamine, due to his aggression, so I was trying to act on that norpinephrine pathway. Also I realized I had taken sudafed daily all through high school, college, and grad school, ostensibly for allergies and congestion, and it may have had a positive effect. :wink: 

The sudafed makes him easier to work with, dramatically easier, but it's hard to fine tune the dose to help without keeping him up at night. Even though I'm giving it in the morning, he's like a squirrel in the trees till late at night if the dose is a full tablet per the box dose. I've been giving him 1/4 tablet and only on select days when he has therapies. However the data is DRAMATIC on the changes. He's able to participate more calmly in his sessions. We had four good weeks on the sudafed with no behaviors, then the week I missed it he had behaviors again. We're at the point where it's clear enough that I don't want to send him into sessions without it in his system. However I am not getting that benefit the other days, when he's working with me, if he's only taking it on therapy days.

So I'm thinking if this Strattera acts on the same pathways, maybe it would help me fine tune and get a more stable effect that he could do daily? He only weighs 75pounds, so we're not talking a lot of frame here. 

I'm just disgusted his ped kept poo-pooing nonstim med options. He said they wouldn't help the worst behaviors, but frankly helping SOME is something. It brings him closer into range so he can hear us and actually use the tools we've taught him to deal with the rest. Without that, his body is just really hard to deal with. He wasn't too bad yesterday when I took him along with me to something where he had to sit, but he had missed several hours of sleep, vomited on the way, and was literally falling asleep, lol. Normally he's just very challenging. 

We're switching doctors, so this is a conversation we could have. In fact, I'd bump up the appt with that doc if I thought he'd write the scrip. I wasn't sure if he would or if he'd want to refer to a pdoc. And maybe it would be better to have that conversation with a pdoc? I mean, what a can of worms at that point. This new doc is family practice, and when he asked about adding ds (just in general, not referencing anything specific), he had said he'd be want us to use a pdoc. I'd rather have the family practice doc write the scrip for Strattera because he's close, making it easy. So I'm not sure what the doc was saying the pdoc would be for. I kind of assumed he meant for anything behavior related, sigh.

I don't know, see anything there, know anything about this? I've heard if you take Wellbutrin longterm eventually it bites you back. How is Strattera? It's an uptake inhibitor. What is the wear off like and do people mix it with sudafed or something else? Take breaks? I don't know, give me the low down. :smile:

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With a child, I would want a pdoc if at all possible.  Once things are fine tuned you could maybe have reg doc do refills and see pdoc every 6 months or so.   That relationship with a pdoc can be very helpful as they get older as well.

Strattera was terrible here for 2 of mine (non bio related) but that is just my 2.  We had a big increase in aggressive behaviors.

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17 minutes ago, Ottakee said:

Strattera was terrible here for 2 of mine

Oh dear. That may be why the ped was hesitant. May explain why I'm having to be so careful with the dose. 

Yeah, if there's ANY possibility of that happening, we'd probably be extremely cautious/reluctant about trying. I'll google that more, thanks.

Foo, you're right. When I googled with those terms it popped right up. I can't even chance it. 

Edited by PeterPan

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You might talk to the doctor about Clonidine. You can google Clonidine and ADHD to see the effect that it has for some people. DS only takes it at night, and it makes him very sleepy, but with the right dosage, I think some people do take it during the daytime.  (DS takes a stimulant med during the day.)

Non-stimulant and also cheap  -- I pay less than $2 each month for it.

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Talk to a pdoc and be done with it. They might know a LOT about risk factors for aggression on it that you don't. It's great that you're willing to figure things out, but you might not be putting all the pieces together at all the right times in the same way that a pdoc would--you might be looking at it one way one time, and then changing some small factor you're considering when you look at it from a different angle. That's just human nature, especially when looking at something stressful.

Yes, it could be a disaster. Totally possible. But it's not like you have everything you need right now either. 

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3 hours ago, kbutton said:

Talk to a pdoc and be done with it. They might know a LOT about risk factors for aggression on it that you don't. It's great that you're willing to figure things out, but you might not be putting all the pieces together at all the right times in the same way that a pdoc would--you might be looking at it one way one time, and then changing some small factor you're considering when you look at it from a different angle. That's just human nature, especially when looking at something stressful.

Yes, it could be a disaster. Totally possible. But it's not like you have everything you need right now either. 

And a study doesn't differentiate which kids had the bad reactions, but an experience Pdoc will have that knowledge - anectdotal, yes, but still good info as to which kids with which profiles do better or worse on which meds. That experience plus your genetic info could be a great complement. 

Also, the meds wear off quickly, most of them, so if it goes terribly wrong you could have an emergency plan in place perhaps and stop them. At least, with the stimulants that is how it works, not sure about the others. 

Also, this is going to NOT match with the literature regarding aggression and stimulants, but I have a bad temper. My whole family does. Bad at times. Yelling, screaming, throwing things as a kid type stuff. Now just yelling. And as an adult I can usually manage it by literally biting my tongue. I learned to do it as a kid, and my mom gave me a hard time for it because I look like an idiot when I do it, but it was bite myself or hit someone at that age. Now it just keeps me from yelling. My son when younger was violent - hitting walls, putting holes in them, throwing furniture. 

We BOTH feel MUCH less aggressive when we are on Vyvanse. I think for two reasons. 1. less constantly feeling overwhelmed and out of control, so less stress to push us into that place. 2. significantly improved impulse control - so we can have the impulse to yell/slam doors/throw things but have the mental ability to STOP that impulse without acting on it. 

So given that, and that Sudafed helps so much, it might be worth a trial of short acting stimulants. Get the stuff that wears off after 4 hours, and have an emergency plan, but seriously, everyone I know says it makes them less aggressive. YMMV. 

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PeterPan, has this kid ever seen the inside of a dedicated multifaceted pediatric autism facility? Is there one within 3 hours of you? 

I ask because I think this is not only pdoc territory but pdoc for autism where they see a lot of teens. All of my Level 2 ASD mom friends say ages 11-14 are rough once the hormones REALLY start coming on board.

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In my limited experience, Strattera doesn't work immediately and wear off like the stimulant medications. It's more like an antidepressant, in that it builds up slowly and starts to work over time. I don't know about long-term usage. 

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5 hours ago, prairiewindmomma said:

PeterPan, has this kid ever seen the inside of a dedicated multifaceted pediatric autism facility? Is there one within 3 hours of you? 

I ask because I think this is not only pdoc territory but pdoc for autism where they see a lot of teens. All of my Level 2 ASD mom friends say ages 11-14 are rough once the hormones REALLY start coming on board.

So we have a major hospital system that does those types of evals, but the price would be astronomical, out of range for us with our insurance.  However what you're saying about the *pdoc specializing in teens thing* makes sense. THAT I think I've heard wind of. There's a FB group and I can search and ask and refine it to that. I've been watching names for a while now, just seeing how things roll. But that makes a lot of sense and it might explain why I'm seeing a lot of hits for a particular pdoc.

4 hours ago, prairiewindmomma said:

vyvanse

It's golden for my dd, but it's a methyl donor, meaning it would send ds' behaviors off the charts. He's dangerous even on benadryl. Like really dangerous. I didn't realize the other times he had had behaviors when on it that it was due to the benadryl. I thought it was just how he reacted to having a rash/reaction, if that makes sense. This time, he had the issue several days and then when I brought in the benadryl is was like boom, AWFUL. 

So what frustrates me about the whole pdoc thing is it's all based in whimsical guessing and never actually based in solid evidence of chemistry. They don't run it and go ok, COMT defects so we won't use this. Nope, some random pdoc would assuredly put him on a stimulant med. I've read the stories locally. To me, this pdoc gig is the most dangerous profession, because they don't seem to me really to have a clue and are dispensing stuff that has heavy side effects.

I read (ok skimmed) the book Ottakee had recommended ages ago on meds, and my conclusion was if I was asking the side effects, the issues weren't severe enough to put up with them. 

So like to me, I have a really hard time saying to put my ds on the alpha agonist meds, blood pressure meds, etc. Those are not actually treating what is actually going on chemically, and they're producing all kinds of side effects. I would have to have something astonishing to warrant that kind of risk and consequence on my otherwise healthy child. I'm just saying. I know people that do it, and I'm not saying their choice was wrong. I'm just saying how I'm thinking through it.

I have *exceptionally* little trust for pdocs and I have enough experience watching family members deal with it that I know I'm not at all willing to walk in and just do whatever they willy nilly say. There is NOTHING going on in our house that warrants the level of side effects I've seen people deal with from meds pdocs describe. As a profession, it's too willy nilly, too throwing spaghetti at the wall, too not actually treating the underlying problems. And I'm all for being pragmatic when the situation calls for it. But right now, our situation does not call for it. We are not in a place of gotta improve something at all costs. We are way too functional for that. I'm just looking to polish it, to get it farther.

And, you know, maybe the answer won't end up being a med. I've been exploring for myself what it means to have sensory needs when you're hypo-responsive. I'm realizing that I have maybe under-estimated my sensory input needs and the calming effect of getting that input. I was not aware of myself enough and I was putting up with a level of internal discomfort. I'm starting to do things with sensory to see how they help me modulate. It may be there are other answers entirely. And if a sensory tool could get him there and could get his body calm in a highly stimulating environment, maybe that's enough. Maybe that's better than a med for him or going more to the root.

I don't know. That's just how I'm thinking it through.

5 hours ago, prairiewindmomma said:

ages 11-14 are rough

Yup, this is what I'm concerned about. Right now we're ok, and his improving maturity is giving me more to work with. We've stopped some of the lunacy the autism school was trying to do (timers for one minute to wait, my lands) and getting him to say his strategy, choose his strategy, use his strategy. We're actually improving quite a bit. He even used polite language (with a prompt) to get up from the table tonight! Hahaha. But I'm just always looking for more, what more I could do that would help him. To me, I'm the most cool with things that are directly related to the thing we're trying to improve. The things that are more tangential to me are sort of pragmatic. I don't know that I'm there yet.

My ds has funny things I'm still struggling to understand, even though I see it. Like last night he tried listening to the Silmarillion for the 2nd time. First time he understood NOTHING, so he wanted to try again. Well he worked at it for hours, and today he was SO zoned and grumpy and hard to connect with and hard to work with. And he's not self-aware enough to know why. We've had that with digital books, like tts computer generated text, where he just kind of falls into the aut and is a mess. So I got him a different audiobook (something on Roadkill, something age-appropriate per BARD), and he perked up! He had fallen into the aut and he needed help to reconnect and come out. He didn't need a medication for that, even though it was grumpiness, even though it was kind of volatile. It was an autism problem, not a chemical problem, and it had an autism solution.

So I don't know. I'm going to look into the pdoc thing because I think there's at least one in the big city who, like you say, has a reputation for doing aut teens well. And you're right, that would be the place to start. I was so overwhelmed by all the names and options I hadn't even known where to start. 

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6 hours ago, Ktgrok said:

We BOTH feel MUCH less aggressive when we are on Vyvanse. I think for two reasons. 1. less constantly feeling overwhelmed and out of control, so less stress to push us into that place. 2. significantly improved impulse control - so we can have the impulse to yell/slam doors/throw things but have the mental ability to STOP that impulse without acting on it. 

So given that, and that Sudafed helps so much, it might be worth a trial of short acting stimulants. Get the stuff that wears off after 4 hours, and have an emergency plan, but seriously, everyone I know says it makes them less aggressive. YMMV. 

I hear what you're saying, but unfortunately my ds' aggression is not the ADHD-caused variety. There are studies on using an anti-psychotic combined with a stimulant med, yes. Seems kinda whack to me, because at that point you're taking one med to drop dopamine and another raise it (hello), but whatever.

Total aside, but I didn't realize the risk of suicide with Strattera was so high. I'm seeing more and more hits for this as I'm googling other things. That's unacceptable for our situation I think, not a risk I'm willing to take. 

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I should add I have a COMT defect if I remember correctly, and one heterozygous MTFHR mutation. Methylated B Vitamins I can only take low amounts of or at least not daily or I get hugely anxious. Benedryl I only take at night, and although as an ultra rapid metabolizer most meds leave my system rapidly benadryl leaves me still dragging the next day, almost up to 24 hours later. But Sudafed is my happy medication, and Vyvanse is even better. 

I think genetics tells us some, but given the variables that epigenetics bring in, turning on and off those genes, it isn't the whole story. 

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55 minutes ago, Ktgrok said:

I should add I have a COMT defect if I remember correctly, and one heterozygous MTFHR mutation. Methylated B Vitamins I can only take low amounts of or at least not daily or I get hugely anxious. Benedryl I only take at night, and although as an ultra rapid metabolizer most meds leave my system rapidly benadryl leaves me still dragging the next day, almost up to 24 hours later. But Sudafed is my happy medication, and Vyvanse is even better. 

I think genetics tells us some, but given the variables that epigenetics bring in, turning on and off those genes, it isn't the whole story. 

Oh that's really interesting! I'm like you, with the mix, so it's interesting to hear how different meds work for you. Haha, maybe Vyvanse would be gold for me. And that makes sense too why you'd have some aggression since you have that COMT defect lurking. And I'm sort of like that, where I have some tolerance for methyls (with caution) because the two defects offset.

However ds doesn't have the MTHFR defect, only the COMT. It's just reactive, raw, agitation without an adequate social thinking filter. We've stabilized the majority of it with the 5HTP, vitamin D, niacin, and some unmethylated B vitamins.

Well anyways, thanks for sharing that more personal data. Gives me stuff to think about. 

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No long term use here, but my oldest did switch to Strattera from the Ritalin. She’s 20 so I think the suicidal worries are less. She’s been on it a month. 
 

pros:  anxiety seems way down. She doesn’t notice it but both my husband and I do. She’s not going from crisis to crisis. But it’s only been a short time so who knows. 
 

cons:  two: Her heart rate has gone up. I am not thrilled since it’s edging up into the territory she was in with the Ritalin. So frustrating.  And two: she says she just as adhd as ever, lol. Which for me, I would take as she’s at least not anxious about being adhd!  
 

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