Unfortunately, I've been more isolated than I would like. I do of course discuss things with my husband but that's not quite the same as an external outlet. For the most part, I've kept these troubles private, but it would be healthy to have a close confidant.

Hi all - I've posted about my daughter's journey with OCD over the past year. While I am extremely grateful that we seem to be a place of relative stability, the ups and downs of the past year have definitely taken a toll on my own mental health. I've been feeling extremely worn out and like I am not giving my best to those around me. I do see a therapist to discuss things, but I also know that managing things with my daughter will be a marathon as others have described. How do you keep afloat and motivated through this marathon? Does anyone have advice or thoughts? I know it's a very complicated topic, but I've just been feeling very down with the burden lately.

Thank you! You have been super helpful - I appreciate it so much. I will PM you at some point on this topic. Med acceptance and compliance is something which concerns me a little bit. When we first started, she actively expressed how she felt the medication was helping and she was involved in the process, aware that missing a dose was not good. Then we went through the horrible period where a symptom of the OCD was fearing all medication, thinking it was harming her which resulted in complete refusal. Since that battle, things have been stable, but we're definitely in a phase of "I will take the medication, but I I don't really want to". Ultimately it hasn't been a big deal because she is doing well overall. It isn't a side effect issue, I think it's just knowing that it's not "normal" to experience what she does and take medication for it. We will discuss with the therapist and hopefully make some progress to the point where it's something she is actively on board with again.

She's definitely at the age where she is aware of the fact that most people don't take medication for mental health related issues, so it's something we're trying to manage. I've been in therapy since she was first diagnosed just to help learn coping skills and manage the ups and downs. It's been extremely helpful and medication has also been presented as an option with no strong recommendation for it. For the most part, I've managed fairly well so it hasn't felt like a necessity. But it is something which I have considered and haven't ruled out. At points I've felt mild depression and anxiety resulting from the stress of the last years.

Thank you - this is great advice as always. We've seen the results of missed medication and it's definitely not great, so absolutely want to try to avoid that circumstance. Navigating how she understands and feels about the diagnosis is a challenge. I like the idea of bringing this up with the therapist. We haven't do so yet since the focus has been coping skills, but they should really be able to help here. I know she doesn't necessarily like the concept of medication... Have you used a proactive adjustment scheme or something more responsive?

Good to know! We've been hoping that with ERP we wouldn't need to rely on regular medication increases especially since she is already on a dose that is considered fairly high for her age. Although, the psychs have said that higher dosages are normal for OCD and this approach helps prevent issues before they arise. We could be conservative, but there are more risks. @livetoread Thanks for your comment. I understand much better now the reality of the marathon. I was incredibly ignorant when we started out and am just grateful to have had support and learned along the way. I appreciate the advice and guidance from those who have been through it - it really means a lot. To add, I've also bee in therapy myself to manage things and learn how to better cope with the ups and downs. I have also considered trying antidepressants myself to manage some of the anxiety I feel from the entire situation. For the most part we've done well, but I do get bogged down with it sometimes.

Thank you! It definitely hasn't been easy. I recognize adjustments and treatment changes are just part of the process, but my hope is that at this point we can leave things alone for the forseeable future. I don't really know what the long term plan is, but we've really tried to avoid getting caught up in thinking too much about that. Edit - to add. There are only a couple of things that currently concern me: The psych feels that her current dosage is really effective and while they don't want to tinker, they may make mico adjustments to keep a constant mg/kg as she grown in an attempt to avoid emergence of symptoms. I don't know if this is normal? She is definitely aware that she takes "medication for her brain" and dislikes it. We went through a refusal period a while back, right now it's okay and it is what it is, but I don't know how to deal with that longer term. Again, minor issue in the grand scheme of things.

Hi all - about a year ago my daughter who is now 8 years old was diagnosed with GAD/OCD and recommended to start Prozac. I first posted in an extremely distraught state, feeling overwhelmed and lost. I'd really like to thank many folks in this community who offered me lots of help and support, especially during times when I didn't know how to keep moving forward. It's been a year since we made the decision to start medication, something which was really agonizing for us at the time. There have been lots of struggles and ups and downs, but overall it feels like we've reached a point where things are somewhat stable. I am extremely grateful for the medication because I truly don't know where we'd be without it. It's taken a lot of adjustments, but it seems things are working well right now, especially in combination with the intensive ERP therapy we have been trying. She is not completely symptom free, but the OCD is not inhibiting her ability to function like a normal child and participate in life. There have been a few situations where we've forgotten her medication or hit a rough patch and are reminded of how fragile things can be. This definitely makes me somewhat uneasy, but all we can do is focus on keeping things steady. I'd lying if I said that I still don't sometimes struggle with the notion that she may be on antidepressants for her whole life, but we've also all come to peace with the fact that meds are needed right now. We don't fret too much about the future and take things one step at at time. As she has matured, we've really started to reap the benefits of ERP therapy. This has dramatically reduced a lot of her existential OCD related fears. Until recently, she did still suffer occasional meltdowns and anxiety attacks, but we've been successfully able to eliminate this with increased level of medication. The combination seems to be working well. We'll see how things go from here. Thanks to all who've helped me over the last year. I appreciate it.

This is extremely helpful, thank you! I really love the way you allowed her to be involved in the process and have autonomy. I philosophically think that is important, even if sometimes it may lead to difficult stretches. I like the way she was able to do a bit of trial and error and appreciate the value of the med. One of the things for us is that realistically she'll likely need medication longer term. I think she already is starting to question that. Now is not the time to experiment, but eventually, I'd love to do a trial lowering the dose as you did.

Hi all, I've recently read the book Dosed: The Medication Generation Grows Up by Kaitlin Bell Barnett and have been spending a lot of time thinking about mental health and psychiatric medication in children. In particular, how can we best communicate with kids about medication? As many of you know, my daugther has severe OCD and has been medicated with Prozac for close to a year. When I first posted about this, I was extremely reticent about medication use in young children and was very against starting treatment. Since then my view has totally changed and I am extraordinarily grateful we started the medication which despite some ups and downs has been a tremendous help for her. I am deeply grateful for the medication which has allowed her to have a much better chance at succeeding in life and having a normal childhood. However, lately I've been wondering how to best communicate with her about the medication, keep her informed about treatment and ensure she is an active participant in the process. When she started she was quite young and certainly didn't conceptualize the full implications of the meds. Now she is more aware, wants to be involved and asks more questions. I want to make sure I'm handling this the best I can. The reality is she will likely be on meds indefinitely so I also want to make sure she is able to manage this a bit. Any advice? What are your thought on what is a very complex topic?

To be honest, right now I'm very hesitant to make any further changes on the meds. There's bit a lot of adjustments and trials and ultimately, I'm not sure if this has been beneficial. I'm hoping we can just hold tight for a little while here and see...

Thanks - over the last little while it's felt like we've been doing a lot of experimentation and trials, which haven't always had a positive impact. Psychiatrists always have the best intention, but it's been tough and for now, I think letting things sit for a while is likely best. I don't think we've optimized things, but perfection isn't really the target for us.

Hi all, it's been a few months since I've posted here but for those who have followed and provided advice, I wanted to share a quick update on my daughter who has been struggling with OCD. Last I posted she was really struggling and her psychiatrist was considering the option of adding on an atypical anti-psychotic to her Prozac. Ultimately, after careful consideration we really did not feel comfortable with this and followed the advice of a few posters here to seek a second opinion. She was evaluated by another psychiatrist who confirmed her diagnosis of OCD and also suggested this was co-morbid with GAD. She was again thoroughly tested for ASD which was again confidently ruled out. Interestingly the psychiatrist we saw suggested lowering her SSRI dose, which was quite high at the time since he wondered if some of her aggression could have been a side effect. We did a brief trial at 20 rather than her normal 40mg dose of Prozac and unfortunately things deteriorated very rapidly. Her OCD symptoms intensified and she began exhibiting new compulsions alongside obsessions of germs and dirt. In the past she had health related anxieties which made her afraid of her medication and these materialized in new ways - she was hesitant to follow the direction of the doctor since she thought he was trying to hurt her. The doctor wanted to trial a different SSRI, Zoloft and after much convincing we gave it a try. Again, this was a failure. Feeling lost and frustrated we ended up back where we started with her at 40mg of Prozac which did bring some stability back to things. The new psychiatrist added a note to her file recommending that she maintain on at least this dose of Prozac moving forward as a baseline. Any new care providers should not mess with this. So after a couple months of ups and downs and tinkering, all we really learned was she needs to be on Prozac. We returned back to her original pych who overall we strongly preferred and are monitoring now. No new meds, focus on ERP and therapy. So...I don't know what to make of it all.

This is exactly it. I was very hesitant to start her on medication at all, but I did come to understand that the risks for fluoxetine in young children are very low. It has been widely studied, is regarded as safe and effective with limited risk for longer term side effects or issues. However, for other classes of drugs, this isn't necessarily the case. Ultimately, I would like to avoid it. @chocolate-chip chooky Thanks - sometimes the most obvious option escapes you when in the midst of dealing with these things. We will seek a secondary opinion before making any decisions.

Certainly up until very recently every indication has been that she loves school. This is why I was initially perplexed and believed there must be something deeper here, although it's possible it has just become increasingly stressful.

Hi all, for those who are interested or following along, I'm sharing a bit of an unfortunate and discouraging update. Over the past few weeks things have continued to deteriorate. She is currently in public school and several times her behavior has resulted in her being removed from the classroom, twice with me being called in to take her home. My immediate hunch was that there must be some underlying issue since school has never been a problem. She does well academically, integrates with her peers and has mostly been happy in this environment. I spoke to her teachers about potential bullying or new stressors but nothing could be pinpointed. I did ask them to keep a careful eye on things, but after another incident, we also booked an emergency psych appointment. The psych said we need to adjust her medication with the addition of an atypical antipsychotic and/or mood stabilizer. I pushed back on this because I would like to use therapy as much as possible. She is getting benefit from ERP and we are exploring other additional options. The psych said we are at a point where pharmacological intervention is required. I'm pretty upset and distraught about this. I really don't like the idea of her being on multiple drugs at her age and we've really done what we can to try to avoid it. Just figuring out what to do right now, but that's where we are at.

Thanks for this comment. She is on a high dose but does not experience significant side effects from the medication, so I do believe my use of the term heavily medicated is a bit inappropriate. I would say the medication is working extremely well overall for her. However, I think I sometimes feel a hint of guilt or uncertainty associated with the fact that she is on a higher dose. That phrasing is more my own internal struggle, which isn't a great framing for sure.

Just to follow-up, a couple people have asked me for details on her current treatment. She is 7 years old and takes 40mg of Prozac. This is definitely a large dose (max for her age), but she does not have side effects. pushing up with the medication was recommend by the psych and gave huge benefits for her OCD and in particular some of the compulsions (hand washing for example). Certainly one of the reasons why we don't want to introduce another med is because she is fairly heavily medicated with the Prozac already.

Thanks! We are exploring therapy options specifically focused on areas outside of OCD, so this is helpful. Again, thanks! I am in therapy myself and trying to learn parenting techniques which can help her in various ways. This has been very useful. On the ASD side, again I'll emphasize that her symptoms don't really add up with that and she's had multiple evaluations at different stages of development, but I do understand people's concern here. Overall, we are definitely trying to focus on solutions that don't require additional medication at this stage since she is young. Lowered Abilify, Seroquel, Risperidone, gabapentin and Lamictal have all been thrown out by the psych, but we're not really ready for this step yet. Perhaps that's not the best approach, but we are cautious here..

Thanks everyone for your comments and support. This is the issue we had with 1mg and we discontinued quite quickly. To be honest, if we can avoid further medication, we would like to. The underlying issue is very clearly anxiety and OCD so we do feel tackling that is essential. She has responded extremely well to Prozac and it keeps the OCD in check - layering on medications is an option, but it doesn't really feel like a panacea. It's also a pretty tough cycle to test, monitor for side effects and iterate. It's sort of a last resort solution at this point but obviously it is an option. Yes, we've picked this up! This is pretty much exactly it. Perfectionism and feeling controlled by OCD are very much the under current pushing her over the edge. @chocolate-chip chooky as always, I appreciate your thoughts and empathy. It is helpful to know that there is hope on the other side.

@PeterPan Thanks for the comments and insight. Just a couple pieces of quick information: I need to double-check, but I believe it was 1mg that was trialed. We've definitely been down this path quite thoroughly and are confident in the diagnosis. She's been screened for ASD at multiple points in her development by multiple physicians and psychiatrists and the symptoms she experiences are not in line with ASD. So we are confident in the diagnosis for sure.

Hi all - I'm reaching out to see if anyone has any thoughts or advice on how to deal with anger issues in our young daugther. The situation is somewhat complex, since the problem is intricately linked to her fairly severe OCD. She is medicated with Prozac and sees a therapist regularly who focuses on ERP for her OCD. Unfortunately, even with these tools, while her OCD is generally fairly well controlled she can still react with aggression or anger when she is feeling anxious or obsessive. Obviously, the ultimate solution is to continue to make progress with the underlying condition however, I am wondering if anyone has resources or suggestions particularly for anger? I'd really like her to learn more healthy coping skills and generally to manage better in the event she is struggling with the OCD. We have talked with both her therapist and psychiatrist on this matter. The psych of course says we can introduce another medication specifically for this but we'd rather not go in this direction right now. She responds well to Prozac but is on the max dose for her age. We did run a trial of adding on a small dose of Abilify but this didn't go as planned. I'm pretty hesitant to mess too much with things here. The therapist is really specialized on OCD and that is what they are targeting there. We could add on some additional therapy for anger. Thoughts, resources, advice are all welcome.

Thank you - we're starting to get more used to handling the ebbs and flows and understand that struggles will arise. The medication helps a lot but we also know it isn't a panacea. She is on the max dose of Prozac for her age - we'll probably leave that as is and focus on the therapy side rather than tinkering further with meds since the last experiment wasn't great.

This post is from some time ago, but I did just want to follow-up with an update since many people offered excellent advice and guidance. Based on the suggestion from the psychiatrist, we did add a small dose of Abilify to my daughter's Prozac to try to help reign in some of the OCD issues. Unfortunately, the medication didn't really sit well with her - we had a few noticeable side effects and discontinued. We were able to increase her Prozac dosage a little to help and we are currently focused on ERP therapy to support the medication. The psychiatrist is open to trying other add-ons, but we are hesitant to do so. For now things are stable, although not perfect.

This is an interesting suggestion and one which I haven't given a lot of thought or discussed deeply with the psychiatrist. We've come to the realization that she will almost certainly need medication indefinitely to manage the OCD. It took both me and my husband time to come to terms with this, but we now both now see this clearly and at the moment it seems Prozac will be a go to for the foreseeable future. I think we automatically assumed any additions would be longer term, but it's definitely worth asking about this... Regarding the potential that her existing issues are side effects or an adverse reaction from her current meds, I don't think is likely. She has responded well at all dosages to the Prozac and has been on it now for close to 8 months. We've only seen benefits from it and she has been carefully monitored for any strange reactions. We were a little concerned when jumping from 20mg to 30mg, but it's been really beneficial. Even at 20mg she had some anxiety breakdowns and severe frustrations that often threatened to spiral out of control if she was unable to complete certain compulsions. Since the increase these issues have been way down. The psych also said another option would be going up again to 40mg which is the max for her age, but we're really in a wait and see stage right now.