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Daughter having significant OCD setbacks, medication refusal...totally lost


mindinggaps
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Just now, KSera said:

Is she working on it on there? It seems it would be the top target right now. 

Yes, we're going to try as soon as we can.

30 minutes ago, BandH said:

Oh yes, there are lots of reasons.  I was just thinking that in general there are two giant buckets of reasons. 
 

1) I don’t want that in my mouth (strategies like switching to pills, following it with a treat, mixing it with something etc . . .)

And 

2) I don’t want that in my body because I have anxiety about that, or it has effects I can’t verbalize that feel wrong, or it makes me feel like there is something wrong with me, or I feel guilty that I can’t control my symptoms or anyone of a bunch of other reasons.

 

Also, @BandH this is a good breakdown. The TL;DR of my post above is we are in category 2.

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I think this just sounds like OCD.  I don’t think this is something that could be caused by parenting in general or your husband.  It sounds like it’s beyond that point, just as the way things have worked out.  
 

I hope you can get a plan that works for you and your spouse.  I think if things are decided at a calm time, then it’s possible to follow through.  
 

(Edited)

 

I think it can help to think about some principles and values that you and your husband have, and that can help with decision-making.  
 

It sounds like a really difficult situation, I’m sorry.  

Edited by Lecka
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A plan can be when/how to discuss things, or agreeing to take pressure off for a certain amount of time before bringing it up, etc, etc.

 

I think there might be a certain point of effect when you might think of choosing for her, and trusting she will see you did what you thought was best as a parent, in the future.  I think if it’s getting to that point, it is best if you and your husband can agree.  
 

I really think it’s easier to have a plan and then just follow it, and re-visit it after a certain time, than always having to be deciding.  

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Hugs, OP. I'm so sorry about this setback. I hope you get back on track soon. 

I don't have experience with OCD in kids (or diagnosed OCD in general), so feel free to take my input with a boulder of salt. But from where I stand, you're doing the right thing. Her trusting you is incredibly important. I wouldn't mess with that. So I'm with you that hiding the medication is a bad idea that could interfere with her long-term trajectory. If you do need to go that route, I'd try my hardest to make sure not to be the "bad guy" who makes her take it. (Maybe a therapist or doctor could help there if push really does come to shove?) 

I am wondering if talking about it every day is creating an unnecessary power struggle that's reinforcing the dysfunctional panic grooves in her brain. At least for my kids (who don't have OCD but have serious anxiety issues), taking a break can help reset them. 

I think a previous poster said this, but I wonder if the right thing to do might be to take a break for a bit, and then start with a "new" medication that's just the same medication in a different form? I don't think that would feel like the same kind of betrayal. "We won't be doing the old medication since it frightens you. I talked to the doctor, and here's a new option they gave me that will help you have an easier time with things." At least for my kids, it would be helpful to bring this up when they've already noticed that they're struggling. 

How's your daughter doing, OP? I assume that since Prozac really helped her function, she's struggling with functioning? 😕 Do you know if she's noticed she's having a hard time? 

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I am also wondering if you would get better answers about why she's scared if you make it clear that you will not force her. I know that my kids do not give me honest answers about why they're doing things when they feel pressured to be doing what I want. I've gotten very surprising answers from them about things when I've given them space to tell me how they feel. (It also helps if I don't expect their reasons to be rational or to require them to justify them.) 

For what it's worth, I think it's perfectly valid to promise you won't make her take it, because that will be a promise that's made from HER perspective, not a promise not to give her Prozac at all. That is, you will not force her to put something in her body that she doesn't consent to. It doesn't mean you wouldn't give it to her in some other form -- different flavor, pill, ground up, whatever.

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@mindinggaps I'm so sorry you're all dealing with this. 

OCD is an absolute beast. 

I absolutely agree with you about not physically forcing and not hiding the medication. This would never have been the right option for my OCD daughter. It was, and still is, absolutely essential that I maintain her trust. Other children, other conditions, other contexts - maybe. But not OCD with this daughter.

However, I absolutely believe that taking the medication is non-negotiable. 

I haven't dealt with full-on medication refusal, but I have dealt with eating refusal. OCD manifested in different ways over the years, and one manifestation was as disordered eating that became an eating disorder. 

My repeated phrase to my daughter: My love for you is stronger than your illness. 

I had to use the LSUYE (life stops until you eat) method. I'd provide food and wait until it was eaten. I wouldn't take her anywhere until she ate, and I'd stay with her for a while after she ate. I stayed calm (on the outside) and absolutely NEVER backed down. Not once ever. She had to know that I meant what I said. No uni. No dance classes. No rehearsals. Nothing unless she ate. 

I won't sugar-coat it. It was really really really hard. Life involves a lot more than one child's needs, but my whole existence needed to revolve around this for about 4-5 months.

I reason I'm telling you all of this is that I think your situation is somewhat similar. My daughter had terror-like reactions to eating. But she had to. Every single meal.

I just had to keep telling her that my love is even stronger than her illness, and that I wasn't letting her skip meals.

My suggestion for you and your daughter: talk to her doctor and get a different version of the med, preferably tablet. And then start fresh. Tell your daughter that you've spoken to the doctor and that they say this is necessary for her health. Then don't back down. She needs to take this, and because your love is even stronger than her illness, you will ensure she does take it. 

I wish you all the best. I know how hard this is. Please PM me if you'd like to chat in more detail. 🌻

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1 hour ago, chocolate-chip chooky said:

I absolutely agree with you about not physically forcing and not hiding the medication. 

However, I absolutely believe that taking the medication is non-negotiable. 

I agree with these.

I have never hidden medications or tricked a child into taking them. And I have only physically forced a child to take medications once during a very dark period when the lack of medication was leading to many people being severely injured.

Most unpleasant tasks are accomplished because my kids simply know that I 100% mean what I say, and will follow through on non-negotiables for as long as it takes. That is its own form of trust. They can absolutely trust that I will be their brick wall that can handle their anger and fear, and will still always love them and care enough to keep them as safe and healthy as I can...even if that requires doing things they really, really don't like.

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7 hours ago, mindinggaps said:

Dear everyone, once again thanks for all your insights and best wishes. Jumping in here to provide a bit of an update and some context. Unfortunately, I still haven't been successful in getting the medication into her, However, last night she did explain to me that she is afraid that the medication will hurt her and this is the reason she won't take it. This was my hypothesis, but I am extremely glad to know this and more importantly, that she told me . Without a doubt, this is a symptom of her OCD and is exactly in line with types of fears and mental obsessions she has struggled with. Regarding the source of this sudden obsession, I don't know. I gently probed but anyone familiar with OCD will know that these types of things are completely irrational and sometimes don't have a clearly identifiable root cause.

I am so sorry irrational beliefs and fears can be so so hard.  I am sorry you and she are dealing with this. 

7 hours ago, mindinggaps said:


In terms of the plan moving forward, while I am sure some will strongly disagree, there are some things I won't do. I will not physically force her to take it, nor will put it into her food or drink without her knowledge. I believe that both of these approaches will cause longer term trauma and issues. She always feels safe talking about her OCD with me and if she discovers that I actively did something which is right now literally her greatest fear, I think the consequences and violation of trust could be severe to her broader well being.

I agree 100% that either sneaking or physically forcing her would be wrong.  I do think that there maybe times when physically forcing a medication makes sense, the oncology example above, but those times are few and far between.  

7 hours ago, mindinggaps said:


Right now, we are trying our best to be patient and keep trying. There have been many excellent suggestions and we are giving some of these a shot. To be clear, I have always communicated to her that she needs to take it. It was never presented as being optional, but me telling her this is equivalent to me telling someone with severe OCD not to repeatedly wash their hands. It just doesn't matter. Certainly I can say that anyone who suggests just telling her she must take it and waiting until she does probably hasn't dealt with OCD.

I have dealt with OCD, and with kids whose OCD leads them to do very dangerous things, not things like hand washing, but things like running into traffic where allowing the behavior wasn't an option.  It's really hard.  Believe me when I say that my own child with massive PTSD was just as hard.  When I say we waited, we waited and waited and waited.  For many many hours.  In his case, physically forcing wasn't a choice due to osteoporosis, and it was a matter of literally sitting together, and keeping my voice low, and letting him know I loved him and I wouldn't have chosen this if there was an easier way.  It was one of the hardest things I've done.  

7 hours ago, mindinggaps said:

This fear is totally dominating her mind right now and it won't just go away or subside - this is the disease she is struggling with and she cannot just turn it off in her mind. Consequences also are hard to implement because of the irrationality of it - she doesn't care. As long as she doesn't have to take it, any consequence is fine in her mind right now.

I haven't seen consequences work in a kid this scared.  

7 hours ago, mindinggaps said:


Right now, I am talking to her and trying to work through it. Longer term she also needs to be willing to take medication, so ideally we reach an outcome here that isn't a daily battle. Her life is hard right now, but she is not in imminent danger so I wouldn't quite equate it to a cancer treatment or anything like that. I will also soon speak to her psychiatrist, but the last message we received was don't force it into her.

I am not saying that you need to decide right now to give the medicine.  You're right that while OCD can be very serious, and very dangerous, she's 7 so you can supervise and buy some time.  I have absolutely made the decision to delay or change a medical procedure that I thought was just too distressing for my child right now.  But I'd still want the message to be "Daddy and I have decided to stop the medicine until we see the doctor." and I would be very careful about talking through it with her too much.  For one thing, it's not a rational fear, and you aren't going to be able to convince her, so you'll just be replaying the fear over and over. 

Also, if you do end up deciding at some point to force the issue, it's going to feel like betrayal, like a broken promise, even if you never actually made the promise.  

And finally, in addition to being afraid of having the medication in her body, she's probably also scared of having that control, and of having the responsibility that comes with the control.  Because that's truly terrifying.  So, you want your message to be "we've decided to take a break" and not "we've decided to let you decide".  In my experience, that's a pretty subtle but powerful difference.  

7 hours ago, mindinggaps said:


Also, yes she is in ERP therapy.

Good.  

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Dear all, apologies for dropping off this thread. It has been a challenging couple of weeks and we've just been trying to keep afloat, but I did want to take the time to provide a brief update. Right now things are somewhat stable, but overall remain fairly volatile. She is currently back on the Prozac and at the suggestion of the psychiatrist, we are trying to fairly aggressively ramp her up to a slightly higher dosage as they believe this whole ordeal started as a breakthrough symptom of her OCD. 

Getting her to take the medication was a huge challenge and continues to be a daily struggle, although things are improving slightly. A couple weekends ago, after repeatedly failing to get her to take it, we booked a psychiatrist appointment and decided to take a couple of days off from the battle. We focused on doing the best we could in the circumstances and engaging in some positive activities - we went to the beach, played in the park and saw some friends. Overall, this did help distract and calm her in some ways, but her OCD was also extremely out of control. One of her main symptoms is fear of contamination and after the beach she was petrified of having been exposed to dirt and bacteria and was compulsively washing herself to the point her skin was irritated.

The psychiatrist was very helpful, worked again to rule out side effects as the reason behind her refusal and discussed with her the importance of the medicine. We discussed switching to another SSRI but ultimately this was not preferred since she's done well on Prozac and it is typically one of the most well tolerated for children. The plan for the next week was to stick with liquid medication, put it in a drink for her, clearly tell her this and sit with her each morning until she consumed it. Although she'd been off the medication for a while, the psychiatrist wanted to administer her regular dosage and increase it slightly each day until we hit a new higher target. It was chaotic - she did take it but shortly after would have anxiety about how it was going to hurt her and would threaten to throw up. There was at least one day where I couldn't get it into her simply because she was refusing for hours and my life had to move forward.

Things got slightly easier as the medication kicked in and we could see her OCD symptoms decreasing. Unfortunately, the rapid ramp up did cause some side effects for her which in turn made her extremely resistant to the medicine again. We saw the psychiatrist the next week and lowered down a little, which helped temporarily, but her OCD is still troubling. Right now we are once again trying to jump up to the higher dosage and transition her to capsules rather than liquid. It remains a daily effort but things are improving.

Apologies for the long and winding post!

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Glad you got her back on the meds.  One challenge with the meds is that the more often they go off and restart them the less likely they are to be as effective.   Every time the brain gets way out of whack again the harder it is to rein it back in.

that is why staying on the meds are so key….even when they are doing so well.

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9 minutes ago, Ottakee said:

Glad you got her back on the meds.  One challenge with the meds is that the more often they go off and restart them the less likely they are to be as effective.   Every time the brain gets way out of whack again the harder it is to rein it back in.

that is why staying on the meds are so key….even when they are doing so well.

Interesting. To be honest, I am not sure I knew this and it is something I'd certainly like to discuss with her psychiatrist. Anecdotally, things were a lot smoother when she was starting the Prozac compared to the process of getting her back on. She's not responding as quickly and is clearly requiring a higher dose. I am somewhat concerned about the higher dosage and if this is going to cause issues over the longer term.

However, the psychiatrist was pushing for this. You may recall that my husband at the start of this process was very concerned about long term prognosis. Right now the recommendation is we need to keep her on meds pretty much indefinitely. There's hope that she can rely on the ERP therapy as she grows, but life without SSRIs for the next while is not realistic.

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30 minutes ago, Ottakee said:

Kinda liken it to diabetes….the more often blood sugars are out of control the harder it is to rein in.

We're really trying to ensure the medication gets in daily. Some days it is easy, others she resists and is fearful. But overall, it is getting better the longer she is on it. Taking pills is also a target in ERP therapy right now.

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13 hours ago, Not_a_Number said:

Anecdotally, I’ve definitely heard that going on and off antidepressants makes them less effective. I don’t think people really know why.

I’m really glad she’s taking the medication again.

Her OCD seems to be getting slightly better as the medication comes back into effect and we are hoping that things will continue to improve. However, I'd say this particular obsessional fear is far from eliminated and it is still taking daily effort to ensure she takes her medication.

Regarding going off and coming on, one interesting thing I noticed is that this experience caused our psychiatrist to take on a slightly firmer tone with her medication prognosis. You will likely recall that my husband was extremely worried about the concept of her being on meds longer term and while the psych addressed this concern realistically it was always with phrases like "it's a definite possibility" or "we will see how things go with therapy but it is an outcome to be prepared for". She also discussed the options of tapering off or lowering dosages to see how she would do with tools learned in ERP therapy.

However, this time she was quite direct and told us she anticipates she will need to be on Prozac indefinitely and we should not anticipate any reductions in medication for the "foreseeable future". I feel this has been alluded to before but never quite so directly or firmly. "Many patients with OCD require SSRIs for life" was also stated.

Edited by mindinggaps
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20 hours ago, mindinggaps said:

Interesting. To be honest, I am not sure I knew this and it is something I'd certainly like to discuss with her psychiatrist. Anecdotally, things were a lot smoother when she was starting the Prozac compared to the process of getting her back on. She's not responding as quickly and is clearly requiring a higher dose. I am somewhat concerned about the higher dosage and if this is going to cause issues over the longer term.

However, the psychiatrist was pushing for this. You may recall that my husband at the start of this process was very concerned about long term prognosis. Right now the recommendation is we need to keep her on meds pretty much indefinitely. There's hope that she can rely on the ERP therapy as she grows, but life without SSRIs for the next while is not realistic.

My personal experience is that OCD is a beast and coming off the meds is iffy at best. In our case OCD has morphed into other obsessions and comorbidities.  Attempts to stop meds have ultimately failed because kiddo would finally realize how much they help. 

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8 hours ago, Kidlit said:

My personal experience is that OCD is a beast and coming off the meds is iffy at best. In our case OCD has morphed into other obsessions and comorbidities.  Attempts to stop meds have ultimately failed because kiddo would finally realize how much they help. 

Yes, the more I learn about both OCD and my daugther, the importance of meds for treatment becomes increasingly clear. The funny thing is when she first started, she immediately realized how they were helping her. My hope is that she will get back to that frame of mind with time because that really is the best situation. But as you say, OCD really is a beast and it's hard to predict how it will manifest and change even on a daily basis.

As much as my husband struggled with the meds, I too have taken time to digest and understand the situation. I was never really worried about the longer term - my mind was always focused on taking it day by day, and being aware that many scenarios could unfold. I wasn't uncomfortable with the concept of long term medication, but I guess I mostly saw it as possibility. Now I see it as extremely likely and probably what is best for her. It's just very hard for me to envision a scenario where she can manage her OCD without it.

I was actually chatting with a wonderful lady involved in running an OCD support group for parents. She herself has OCD and explained that she stared meds at around 5 or 6 and is still on them today in her 30s after several failed attempt to come off. She was very comfortable and open explaining that it's just required for her to manage. She's happy, healthy and living a great quality of life which is amazing to see.

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My youngest has a severe anxiety disorder, although not OCD.  She started meds just after she turned five, and in retrospect I wish we had started at 2 or 3.  We tried ONCE to go off of meds, when she was 11 and had completed puberty, and I don't anticipate she ever will again.  She notices a major uptick in her anxiety if she's even a couple hours late with dosages.  It certainly makes it easier when the person is on board!

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18 hours ago, Terabith said:

My youngest has a severe anxiety disorder, although not OCD.  She started meds just after she turned five, and in retrospect I wish we had started at 2 or 3.  We tried ONCE to go off of meds, when she was 11 and had completed puberty, and I don't anticipate she ever will again.  She notices a major uptick in her anxiety if she's even a couple hours late with dosages.  It certainly makes it easier when the person is on board!

Looking back, I certainly relate to the reflection that starting earlier would have been wise. I'm not sure when the right point in time was, but I do think she was clearly suffering with OCD for too long before we got proper treatment.

It sounds like your child has a pretty positive and healthy relationship with the medication and knows it's important. I'm curious if you or others have any advice or insight into how to achieve this? As you said, everything is easier if they are on board. I know that for us, it's a little more complicated because her resistance to the medication is a manifestation of the OCD. However, I really want to do what we can to foster the understanding that medication is good for her health and well being - it is not something to be scared or worried or ashamed of, it is something which is helping her be herself and thrive. I really hope that we can get to this point, just not sure what we need to be doing right now to get there or if there is anything we can do.

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7 hours ago, mindinggaps said:

Looking back, I certainly relate to the reflection that starting earlier would have been wise. I'm not sure when the right point in time was, but I do think she was clearly suffering with OCD for too long before we got proper treatment.

It sounds like your child has a pretty positive and healthy relationship with the medication and knows it's important. I'm curious if you or others have any advice or insight into how to achieve this? As you said, everything is easier if they are on board. I know that for us, it's a little more complicated because her resistance to the medication is a manifestation of the OCD. However, I really want to do what we can to foster the understanding that medication is good for her health and well being - it is not something to be scared or worried or ashamed of, it is something which is helping her be herself and thrive. I really hope that we can get to this point, just not sure what we need to be doing right now to get there or if there is anything we can do.

I don't know what your daughter is like. Kids vary so much. And I don't have kids with OCD, or even medicated kids, so maybe my perspective is of limited value. But for what it's worth . . . 

I know that for my kids, saying that something is non-negotiable will mean that they won't tell me all of what they think or feel about something (what's the point? They have to do it anyway) which in turn will mean that they will never be fully on board. My kids have never been fully convinced that something was good for them unless they got a chance to participate in the decision. This has applied to a wide set of circumstances.  

I've spent lots of time teaching kids, so I know that not all kids are like this -- we're in the minority. Some kids can get on board by just being told why they should be on board. And I can also see the dilemma here -- she really does NEED to be taking her medication, and she's not equipped to make medical decisions for herself. 

So I don't have any answers here. I just know that I'd worry about the possibility of the medication becoming a power struggle and not something that you both agree is what she needs to function day to day. 

Edited by Not_a_Number
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9 hours ago, mindinggaps said:

Looking back, I certainly relate to the reflection that starting earlier would have been wise. I'm not sure when the right point in time was, but I do think she was clearly suffering with OCD for too long before we got proper treatment.

It sounds like your child has a pretty positive and healthy relationship with the medication and knows it's important. I'm curious if you or others have any advice or insight into how to achieve this? As you said, everything is easier if they are on board. I know that for us, it's a little more complicated because her resistance to the medication is a manifestation of the OCD. However, I really want to do what we can to foster the understanding that medication is good for her health and well being - it is not something to be scared or worried or ashamed of, it is something which is helping her be herself and thrive. I really hope that we can get to this point, just not sure what we need to be doing right now to get there or if there is anything we can do.

For us, science helped. Your daughter is a lot younger than mine was when she started on meds, so your experience will be somewhat different.

But for us, understanding the basics of the physiology of the condition really helped. It frames the situation as a medical condition (which it is!) as opposed to a behavioural issue.

It also helped to make analogies to other medical conditions that need medicating eg diabetes.

Personally, I prefer the term 'neurotransmitters' to 'chemicals' when talking about brains. The term 'chemicals' can be triggering to people with OCD.

And we also discussed what SSRI means in relation to the physiology of the condition.

 

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I'll also add that I agree with other posters who have said that taking medication shouldn't be the child's choice at this age. That's a responsibility for the adults - the doctors and the parents/carers.

And this ramps up even more if the child has a fear of the medication. They should not have to feel responsible for making a decision about taking it. It's an extra layer of worry.

I really do understand how difficult this is. I wish you all the best 🌻

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This is my approach with — a different thing and different age.

 

While still more at a place where there’s not as much rational thought, I go more for “we agreed at the doctors office.”  “Mom and Dad agree with the doctor, we think this is important for you.”  Stuff like that.

 

I would say based on some reading and some other (but different) advice from another different situation….. there’s only so much that can be done to talk to somebody rationally and reasonably if they are not currently in a place to do that.  To fill in a blank with OCD, people say “don’t have a conversation with the OCD” type of things.  There’s no obligation to go through conversations that are not productive and that aren’t going to be productive *if they are contributing to someone getting more and more upset* in particular.  I do say things like “it’s okay to have a hard time sometimes, I’m sorry you’re having a hard time” type of things.  

 

Then when the person is doing better, that’s a good time to share information and stuff.  And then if you see what makes a connection, that is stuff to focus on more.  
 

I do talk about other people who take medication.

 

I have heard things like helping someone’s brain to be healthy if there’s terminology like that that would work.  
 

This is a tough topic!!!!!!!!

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@Lecka, @chocolate-chip chooky and others - thank you for the suggestions and comments. This is truly very helpful and you have given me many ideas for ways to have these discussions in an age appropriate and healthy way.

On 7/27/2023 at 9:25 PM, chocolate-chip chooky said:

For us, science helped. Your daughter is a lot younger than mine was when she started on meds, so your experience will be somewhat different.

Our daugther is very scientifically inclined and it is one of her main interests, so I do wonder once she is in a fully stable place about lightly touching upon some of the things you mentioned - explaining the physiology, neurotransmitters and SSRIs. I think she would enjoy learning and it may help her overall. Right now we are keep things simple and whenever there is resistance, we are reinforcing that the medication is required to keep her healthy, like the doctor explained.

Over the past week, we have seen some encouraging progress. She's taken her Prozac every day now for the past week or so and we're definitely seeing a significant reduction in her obsessions and compulsions. Her fear of dirt and contamination has reduced, and while she is still sometimes leery of the medication, she is more willing to take it and less fearful that it will hurt her. Having said this, things are still not as well controlled as they were before this setback. She's still checking things a lot, still asking a lot of the same questions repetitively and is too detailed oriented with many things.

We are also successfully transitioning from liquid to capsules. Currently, she is taking the dose she was previously on in capsule form. The psychiatrist wants to increase her dose so we are supplementing this with liquid, gradually increasing daily. Once we get to the full target amount, we will transition fully to capsules.

My husband has expressed concerns about increasing the dosage, but am not opening up this avenue of discussion. This is what was recommended by the doctor and we will do it. The main focus from the psychiatrist's perspective is ensuring she does not have another OCD relapse.

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