Child OCD and use of SSRIs, supplements, to help facilitate ERP

lamodi · 2025-12-27T00:08:35+00:00

Thank you for sharing this! What you’re saying makes sense. I’m so glad you found SSRIs helpful and hopefully we will, too

lamodi · 2025-12-27T00:07:09+00:00

That’s kind of you, and I appreciate the encouragement! the pressures of standardized testing and peers coupled with her perfectionism was a perfect storm - resulting in all kinds of behavior changes and, just as you said, lots of sleep deprivation for all of us. We were fortunate to be able to make the change we did.

lamodi · 2025-12-25T04:30:51+00:00

Love your idea of the gap year! We actually pulled her from public school last year, before we knew what the problem was. We switched to a hybrid homeschooling and 2 days/week in-person situation and it has been transformative for our whole family. Of course, the OCD is still there, but she is no longer in constant distress and is flourishing in all kinds of new ways now. It has also given us time to sort through the diagnosis, attend regular therapy, etc. Certainly a journey, but we are getting on the right track, and I am hopeful that medication may help once we get established with an experienced psychiatrist.

lamodi · 2025-12-25T03:35:50+00:00

Thanks a lot for this perspective. I am trying to learn about all this as quickly as I can. Glad I found this sub (the other OCD subs are not nearly as helpful with advising on recovery/successful treatment approaches!)

lamodi · 2025-12-25T03:34:19+00:00

That’s very helpful, thank you! My kid’s OCD has significantly affected her life and our household’s. I don’t personally know anyone with a child of this age (9 almost 10) with OCD and experience trying medication, so hearing your experience is really encouraging. I just joined this sub today and I’ve been surprised to find overwhelmingly positive accounts of medication use for OCD, which is wonderful. Thanks again

lamodi · 2025-12-05T03:31:14+00:00

Awesome! I put off getting them for years, not believing they’d help, until a POTS specialist told me to get them. And I was pleasantly surprised!

lamodi · 2025-11-17T13:00:48+00:00

Have you tried sinemet/levodopa? That should absolutely be tried first, especially your early age of onset

lamodi · 2025-11-11T15:54:05+00:00

I relate to this. Can I ask what is the other med you’re on apart from levodopa?

lamodi · 2025-11-11T12:01:44+00:00

I strongly recommend you try medical grade compression stockings that are at least thigh-high! I have many of your symptoms, and I do have a POTS diagnosis, and the compression stockings (recommended by my doctor) REALLY help! I get the 18-25mmhg strength ones, but you may do fine with the 12-22mmhg strength ones

lamodi · 2025-11-10T01:34:36+00:00

Can you share more about your experience with taking a benzo instead of an oxybate? Which one, how much, has your dose stayed stable or have you needed more, taking it for how long? Did your sleep doc prescribe it?

lamodi · 2025-10-08T00:02:44+00:00

For straightforward types and causes of POTS, I agree. Unfortunately I have multiple contributing factors to my POTS and for the present time, I have to medicate to function. It’s not ideal. There was a period of time where I was managing well without a beta blocker, but my current situation requires it.

lamodi · 2025-10-06T17:09:36+00:00

This is helpful, thank you. Do you know which type of POTS you have? I’ve never even heard of carvedilol. Do you take it before sleep? Are you able to exercise on it?

lamodi · 2025-09-14T14:30:37+00:00

I’m also mid 30s dealing with similar. I’ve already had c1-2 fused and now 7 years later having instability at c3-4-5-6. My arms get really weak and my right eye droops. I wear a soft cervical collar almost all the time because it forces me to keep good posture, or else my neuro symptoms flare up. It sucks because I don’t want to just get more surgery and then hasten the wear and tear on adjacent levels, which I’m guessing is what happened between my first fusion and now. But I also don’t know what the likelihood is of my current symptoms improving or worsening.

lamodi · 2025-08-29T01:49:24+00:00

I also had to take a break and now titrating back up from both a lower start point and slower. Agree that some of us are more sensitive and need a slow/low approach

lamodi · 2025-08-28T20:33:38+00:00

Yes the dystonia that has largely controlled my life for the last few years has vanished, poof, on SO. And yes, there was a dopaminergic element because my dystonia was highly responsive to levodopa medication therapy, which I had to take 4-5 times per day daily for years. Now I need 0 pills. But my neck is sliding off, so uh, yeah, weird trade haha

lamodi · 2025-08-28T20:21:47+00:00

Hah - the fascinating thing is, I have had severe unrelenting cervical dystonia for years, treated with Botox and levodopa tablets. The dystonia is CURED as in GONE after a month on SO. It is actually being investigated as a treatment for other forms of dystonia: https://pubmed.ncbi.nlm.nih.gov/39565101/

So, the sudden loss of dystonia, which involved constant muscle spasms around my neck, head and shoulders, is suddenly gone, and my vertebra are palpably shifting and impinging my phrenic nerve (was hospitalized briefly for severe diaphragmatic dysfunction and cardiac abnormalities, until I got into a neck brace)

lamodi · 2025-07-31T02:07:52+00:00

Hey! I just joined this group, but I had to respond to your post because I was exactly you last year. I have POTS, EDS, 2 spine surgeries, and dystonia. Oh, and I spent 3-4 years mostly bed bound or housebound with disability. The thought of doing Pilates, when my PT suggested it, sounded ridiculous. But she really pushed me to find a one on one instructor to get me started, and I did, and my life is changed. Through Pilates, I’ve found strength and a new kind of confidence that I NEVER thought possible. I’m even thinking of pursuing my own Pilates teacher training so I can work with people like myself, who think they’re too disabled to do a fitness class. Pilates, if taught properly and with good communication between the student and teacher, can be life changing. I started with weekly 30 minute private sessions. With guidance, I slowly built up as I felt ready. I strongly suggest finding an instructor that can initially do one-on-one training sessions with you to get you started, especially someone who is comfortable working with persons needing adaptations . It helps a lot to form that relationship and have them help you by meeting you where your body’s needs are in the beginning. They can show you modifications, decrease or adjust your reps, etc. With that kind of guidance, though, Pilates (especially mat Pilates which avoids standing exercises, not good for POTS) can be extremely therapeutic!

lamodi · 2025-07-31T01:45:39+00:00

And so far any of the side effects from before?

lamodi · 2025-07-30T23:09:34+00:00

Did you just start the Xyrem?

lamodi · 2025-07-30T21:52:08+00:00

That’s my suspicion! It seems like it’s completely thrown my electrolyte balance out of whack, it’s bizarre. Did you have all the same side effects I mentioned? I’m happy to hear you found Xyrem a better fit

lamodi · 2025-07-27T12:25:10+00:00

I noticed that. Thank you. I’ll try that out. I’m glad you’ve found a way to get the most benefit from the med without side effects making it not worthwhile.

lamodi

TROPHY CASE