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SSRI's and teens


sbgrace
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My teen son has OCD that has worsened lately. We have had times, in the past, where it was worse and then got better. We have had long periods of times when he believed he didn't have OCD anymore at all. I have been aware of this current worsening since mid-July.  

He told his psychiatrist about it and the psychiatrist recommended he start Luvox. His genetics (GeneSite) indicate issues with SSRI's, so the psych wanted to start low and go slow.

My son was really resistant to the idea of medication, probably partially because he had some really bad side effects with various ADHD medications in the past. He asked to try other things.

We decided to have another appointment to discuss medication in six weeks. He started a CBT program for OCD and he is meeting the goals so far. But his anxiety is high, particularly when the OCD interferes with sleep (the lack of sleep makes it worse).  

His six week follow up is this week. I was hoping the decision would be clear to both of us by this time, but I still don't know what to do.

Does anyone have thoughts or experience?

 

Edited by sbgrace
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I can't remember if it was you or someone else. Was your ds taking vitamin D at night? And if it was he, did changing the time of the dose alter that?

Ok, this is my two cents, and I'm not a professional. The insomnia/night owl thing probably has more going on chemically. Treating that (per the genetics) might tamp down the anxiety a *little*. I also don't think that "start with a low dose" is necessarily the answer when they aren't explaining why the ADHD meds were bad voodoo. 

Do you have his raw data from the genetics to run the file through https://www.knowyourgenetics.com  It's free. That with give you info on his methylation status, VDR, etc. Also look for the SNP/RS# for the TPH2 gene, which will tell you whether his 5HTP is affected. 5HTP is the precursor to melatonin and serotonin. So if you deal with the methylation stuff (which would be a PRIME CULPRIT in bad voodoo reactions to ADHD meds which are methyl donors) and you deal with the 5HTP issue, then you see what's left.

So then a really controversial thought. There are SSRI/SNRI meds, yes. There are also as needed meds like buspar, which are a little different because they're *agonists* instead of uptake inhibitors. They can work. And the buspar is nice because it's something he can take and drop, it wears off, not a heavy commitment. Thing is, the buspar also ups dopamine along the way, which can aggravate like the ADHD meds did. For my ds, taking extra 5HTP (which pulls down methyl levels) is enough to let him tolerate the buspar. That's what we do. I'm not saying that as medical advice, as it's very hack. I'm just saying what we do.

I'm with you that it's aggravating that the answer to "but he had a reaction" is let's try another med rather than let's understand why. If you haven't tried the KYG site, might be worth your time.

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I don’t have advice, but I wanted to give you some virtual hugs. We’ve had some snags with some ADHD/Depression/Anxiety meds lately and it’s just so soul sucking trying to figure this all out.  I hope someone else can chime in with help for your specific issue.

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I take Luvox for OCD. It is very, very effective for me, much more than I ever expected it to be. I started low, at about 1/3 (?) of the dose I am taking now and we ramped it up. It will take several weeks to start working AND you may need to increase the dose several times until it is effective. Don't be quick to say, "Oh, this isn't working" and give up.

It caused some insomnia for me, especially at the beginning. My doctor and I fiddled with the timing of the med and I sleep well now. 

Long-term side effects for me were weight gain (most gain an average of about 15 lbs. over two years or so, I believe), tea-related issues, and daytime sleepiness. There are always side effects with psychiatric medications. Always. The question is whether or not they are worth it. For me, the medication changed my life (and my family's life) drastically for the better, so until something better is available, this is it. 🙂 Seriously, like day and night.

Feel free to PM me with any questions.

Edited by MercyA
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We don't have experience with OCD, but I do have teens who have used SSRIs. One of them did not benefit because of non compliance. The other did have some relief from anxiety and depression. 

My personal experience: I first tried an anti depressant in college. I made me sleep ALL the time, so I couldn't take it. The next one I tried caused weird issues with muscle movement, a rash, and seizures (it was a tri-cyclic though). Definitely a no go. I tried one more time in my 20's. That one just didn't do anything. I gave up on SSRIs altogether. It sounds like your son's doctor is very cautious and reasonable, so even though I had some really bad experiences, I wouldn't hesitate to let him try it--I let my own children obviously. And my situation was so long ago...so much has changed.

My story does have a happy ending. After swearing off any and all anti depressants for so many years, I found myself with horrible anxiety and panic attacks in my 40's due to perimenopause. Benzos didn't help. After years of suffering, one day--I was so miserable--I found an old bottle of my kid's zoloft (the non compliant kid who wouldn't take it), and I started taking it. I started noticing changes within a week. My ulcer symptoms decreased. Then slowly I started feeling "normal" again. I cannot overemphasize how life changing this drug has been for me. So I'm not a teenager, but I wanted to end the story on a positive note since my own teen experience with anti depressants was so bad. 

I think the take away is--every drug affects every individual differently, and he may have to try several and try lots of different dosing before finding something that helps. This is not for the faint of heart. It can definitely be defeating when yet another med doesn't work. You both have probably already experienced this.

hugs from me to you. Parenting a teen or adult child with mental illness is...often a very long, rough, and lonely road. I hope y'all can find something that helps.

Edited by popmom
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Not for OCD, but both of my teens take sertaline for anxiety.  The youngest actually started just after her fifth birthday, and it was seriously life changing.  She has not had any side effects that we have noticed, but she started so young, that might have been hard to tease out.  She actually had an immediate positive effect; it didn't have to build.  I mean, we had more improvements over time, but she had significant changes with the first dose.  The preschool teacher, who did not know we had medicated her, asked what had changed, because she was so different.  (Her anxiety was released enough that she actually talked at school!  Her autism symptoms reduced by like 80%.)  

Oldest child developed anxiety with some depression in ninth grade, and we started sertaline a year later, after trying therapy for a year with no real relief.  We had typical ramp up with slow response.  A couple months afterwards, we were probably at about 85% of baseline and doing pretty well and functional, but then covid hit.  They had a pretty big setback mood wise with reduced physical and social activity, and we had to bump the dosage up, but I think we're at about back to baseline.  There are some physical symptoms that we have noticed that might be side effects of the meds but also could predate them.  (High heart rate.)  Psychiatrist doesn't think it's related; pediatrician thinks it might be.  We're waiting to see cardiology.  

Our family has all had incredibly positive responses to SSRIs with no side effects that were clearly pinpointed to them.  

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I have a child with severe OCD.  Medication, plus Exposure Response Prevention treatment, was an almost literal lifesaver for her and our family.  She was in a partial hospitalization program for 12 weeks several years ago.  It did require a complete upheaval of our family for a time, but it was 100% worth it.  She had what I think of as a “refresher course” with exposure therapy at Mayo Clinic last fall. Because this very specific type of therapy isn’t available in our area, we have not been able to maintain it, but the “jumpstart” Mayo have her, plus medication, helped her over a rocky time last fall. 

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My DD has OCD as a result of PANS.  (Just as an aside, have you noticed at all his OCD getting worse after an illness or with allergies?)  We were told by her immunologist that SSRI's can be very bad for PANS kids so we haven't considered them.  We are working on ERP therapy techniques which is helping.  I have also been watching tons of videos by Natasha Daniels which have been extremely beneficial.  I am part of her online parenting community -- worth every penny. She only opens it up periodically for new members; I highly recommend getting on the waitlist.  I'm not sure if this helps at all as I have no experience with the meds.  I'm sorry your son is struggling.  It can be such a debilitating condition and I often don't know the right thing to do or say to help my daughter.  

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I'd be extremely leery.   I already knew there are issues with teens and antidepressants, and as soon as 2dd heard (pharmD.) she strongly expressed her concern.

 - we had a (potentially) nightmare scenario here with a teen on antidepressants for anxiety (where we started low and slow.  raised it once, and it was one too many times.) - it was prescribed by a pediatric neurologist, but I had to take him to a psychiatrist who insisted his dose was TOO LOW, and wanted it raised higher - despite all the issues.   I finally just pulled him off of them, and I refuse to start him back on any antidepressant. things settled back down.  We have been dealing with his anxiety a different way.

 It was too scary - and  doctors were dismissing the "side effects" as not serious.  (gee, no wonder there are teens on antidepressants who killed themselves, but people blame the kid - not the antidepressant.  My son was NOT suicidal before they raised the dose on the antidepressant.  and when i took him off of them, he was no longer suicidal.  it was the anti-depressant.) 

sorry, when my kid tells me exactly HOW he wants to hurt himself in addition to how everyone would be happier if he were dead - I take it seriously.   

 

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I have had two kids on antidepressants one for OCD and one for anxiety.  I would not ever do it again.  It can be wonderful for some, but very bad for others.  I had one child who attempted suicide twice while on one, it was very scary and not something I usually talk about.   Child was not suicidal before going on medication.  The first time we though was part of the anxiety, the second time we took child off meds and it improved things.

The other child, after starting the meds, started having suicidal thoughts but let me know right away.  We were able to get child off meds and child has not had anymore suicidal thoughts.

I am not against the use of antidepressants, but I do urge caution and keeping a very close eye on teens and children when they are using them.

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I have a teen with OCD, often debilitating for her. We've tried numerous meds, but they all have had to be discontinued due to side effects. I think it is very difficult to know if a medication will work or cause problems until you try them. I honestly wish we could just give her a pill and her OCD would get better or go away, but it just hasn't been that easy. 

I know you are asking about SSRIs, but since meds haven't worked for us we've had to look for other treatments.  One of the most helpful things we have found for her anxiety, OCD, and sleep issues is an Alpha-Stim. It's an electrotherapy device you wear on your ears.  I thought it was really odd when one of her mental health providers suggested it, but they had one in the office we could borrow for a month's trial, and surprisingly after about 3 weeks it started helping her. We could never get our insurance to pay for it, but we bought it and she uses it daily. If she misses a day it is very obvious. It might be worth looking into. 

 

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We have a teen wih ADHD and depression issues. The first ssri was no good for him, but the second has helped. 

I have anxiety issues that look like I tried a little of everything off the anxiety alphabet buffet as well as depression. I've been on a few different rx over the years with mixed results; I'm currently on one that works pretty well with no noticeable side effects. 

Unfortunately, trial & error is just the nature of it until we iron out a better way. The doctor's plan sounds quite reasonable, and medication combined with CBT is generally considered the most effective treatment route. 

Best of luck!

 

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  • 1 month later...
On 9/28/2020 at 11:40 AM, PeterPan said:

That's interesting. We had someone suggest transcranial magnetic stimulation for ds. 

 

On 9/28/2020 at 11:37 AM, morgan said:

 

I know you are asking about SSRIs, but since meds haven't worked for us we've had to look for other treatments.  One of the most helpful things we have found for her anxiety, OCD, and sleep issues is an Alpha-Stim. It's an electrotherapy device you wear on your ears.  

 

Ds15 is having issues with sleep and anger and anxiety. His counselor says he should start SSRI. I am very concerned. I would like to try something with no or little side effects. I hope his doctor can prescribe Alpha Stim to start. 

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On 11/20/2020 at 8:58 AM, JadeOrchidSong said:

His counselor says he should start SSRI.

It's amazing how people give advice out of specialty! A counselor cannot prescribe and shouldn't even be recommending specific meds. And no, the anger/aggression thing bumps it up. Sometimes they'll say it's stemming from other things (communication, EF difficulties, etc), but if it's chemical, sure some meds could make it worse. 

Just for your own information, you could run genetics and see what you think. The mix you're describing sounds like methylation cycle defects. You can run the raw data download from 23andme through an engine like www.knowyourgenetics.com to get the methylation cycle stuff. Then use a search engine like promethease to make your raw data more searchable and look at the TPH2 genes. 

For my ds, controlling the methyl levels controls the dopamine and aggression. So some of the treatments are really basic, like VITAMIN D. We also use 5HTP, which again you can see with that TPH2 gene. And the melatonin levels (his sleep issues) also go back to this. Now we put my ds on an anxiety med as well, so it's not like I've figured out how to solve everything with genes and supplements. But there's stuff there if you're wanting explanations or something more thorough. The bipolar/schizophrenia stuff and just tendency to irritability (beyond what they want to be) is in the genes and easy to see. It means they could predict drug reactions if they wanted, and it means some people need more complicated care. I got a referral to a big hospital several hours away and was told to use their psychiatry department when we max out what I'm doing. My family doc will give him a really basic anxiety med (which does up the aggression, anything that ups dopamine or has methyls could up aggression), but that's the extent of what my family doc will do. So you're walking a pdoc or psychiatric nurse practitioner to sort things out. You can get these services by telehealth. 

But if you're asking what you can do in the meantime or while you sort out what you want, genetics can be a place to start. We haven't run labs on my ds, because that would be challenging and not worth it yet. But I can tell you for myself that I notice a major difference between my D in the 60s and my D in the 90s. And something as simple as D can stabilize mood *because it's part of the methylation cycle*. 

Fwiw, what I read was that if you're asking what the side effects are, you aren't serious enough yet to need it. That's why I was suggesting you have in between options, like genetics. Clearly your ds' situation is significant, but if you're not there yet on meds, that could be your inbetween choice.

Edited by PeterPan
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On 11/20/2020 at 8:58 AM, JadeOrchidSong said:

I hope his doctor can prescribe Alpha Stim to start. 

Wow, really? That was the path I was just slowest to consider. You might look at the genetics and labs first. It would be weird to treat with electrical stim approaches something that is a simple, treatable chemistry problem. The 5HTP might rid some of that right up. Just isn't flashy or going to make money for a company. We use Natrol time release, lasts 12 hours so taken twice a day. It will up his melatonin. Using 5HTP was the first time in my life I ever even got properly tired at night. I never used to get tired.

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On 11/21/2020 at 9:49 AM, PeterPan said:

Wow, really? That was the path I was just slowest to consider. You might look at the genetics and labs first. It would be weird to treat with electrical stim approaches something that is a simple, treatable chemistry problem. The 5HTP might rid some of that right up. Just isn't flashy or going to make money for a company. We use Natrol time release, lasts 12 hours so taken twice a day. It will up his melatonin. Using 5HTP was the first time in my life I ever even got properly tired at night. I never used to get tired.

I have no idea what to do. I am just very desperate to help him. 

So the genetics you mentioned, is this done by lab? I do want to do less invasive treatment for him first. If the 5HTP works, definitely he should try it first. 

Now I give him (and myself) D3, E, and B-complex daily. His school give the students this whole week off and he is much better and much less irritable. He sleeps in and he cooks yummy food for himself and for the family. He will have the next 8 weeks at home for 5 weeks distance learning and 3 weeks off for holidays. Before this he has been in person schooling almost 6 days a week because of added debate and theater hours. Hopefully the slowing down will ease his stress and we will have time to deal with it. 

Thanks a lot, PeterPan. 

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Jade, it's so hard to make these decisions. Our pediatrician prescribed DS's ADHD meds for years, but when we needed to step up to something else, we went to a psychiatric nurse practitioner, who has been great. The NP explains how the meds affect the body and advises but lets us make the decisions that we feel comfortable with.

It took us quite a few months to get an appointment with the NP, so I suggest getting on a waiting list at a (pediatric, if possible) psychiatric office soon. Your counselor or regular doctor hopefully can refer you.

I was really hesitant, but the SSRI has made a huge difference with DS's anger and anxiety issues. When DS started ADHD meds long ago, it made a night and day difference for him. With the SSRI, DS is much less argumentative and is able to start talking about some of his feelings instead of just acting them out (this is a significant change for him, because he is not at all self-reflective).

If you have not used melatonin before, it's something you can try that is over the counter. DS uses an extended release version that helps him stay asleep. A psychiatric practitioner should take sleep into consideration and help you figure out a combination of things that might help.

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1 hour ago, JadeOrchidSong said:

So the genetics you mentioned, is this done by lab? I do want to do less invasive treatment for him first. If the 5HTP works, definitely he should try it first. 

I used 23andme, just the normal $69 on sale thing. You don't need to pay extra for their health report, because they run the same chip and give you the same genetic data either way. 

1 hour ago, JadeOrchidSong said:

Hopefully the slowing down will ease his stress

Sounds like the school stuff was playing a part! How is his self awareness? https://www.kelly-mahler.com/what-is-interoception/  There are 16 main lessons, and they could be done 2 a week for 8 weeks or even 1 a day (4 days a week) to get through it more quickly. So there you're bumping self-awareness to improve his self advocacy. It will blend well with the CBT and be foundational even. He might have things going on he hasn't sorted out or been able to put into words or connected. Has he ever had an OT eval? 

1 hour ago, JadeOrchidSong said:

I give him (and myself) D3, E, and B-complex daily.

What time does he take the vitamin D? That can keep him up if he's taking it late. 

Melatonin is a methyl donor, so just see how it goes. Yank if it causes a problem. 5HTP is the precursor to melatonin without bringing methyls. So if he has a TPH2 defect, then raising the 5HTP can raise the melatonin without the added methylation/aggression issues. That's how it works for me and ds. 

So the genetics is not a whiz bang solution. It's more of connect the dots, oh that's why something didn't work. It might help you predict negative reactions to meds or see if there's anything you could refine with your supplements. But it does sound like he's been under a lot of stress (masks and high school academics and lots of activities) and that he's going to need that calmed down. It's good he's getting a break! I think one of the challenges with mental health stuff is we view it as a "fix" when really the approach needs to *fluxuate* to meet demands. So his stress has gone up and he needs added tools and strategies and doses that meet that. That can be meds, but that could also be that interoception work to bump his self awareness and ability to self advocate and do that for himself. After they work through the initial phase (16 lessons on body awareness), then they start into their "feel good menu" and developing your awareness of what works for you. 

Edited by PeterPan
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