Weaning child off SSRIs? Any advice or thoughts?

[livetoread]

16 hours ago, mindinggaps said:

This is a major concern for me and I'd like her to be off SSRIs during puberty since they can totally change how sexuality develops. This makes sense, how can you know you are suffering from sexual side effects due to the medication if you don't even know what healthy sexuality is?

Regarding your concerns about her healthy sexual development, I'm going to try and be gentle here, but how is she going to know what healthy sexuality is if she is struggling with anxiety and OCD? Her baseline is not normal sexual development without meds, her baseline is a severe mental illness that she is going to be dealing with, in various forms and intensities, her entire life. There is likely to be no part of her life that is untouched by this illness, including her sexual development. Meds might decrease her libido for sure but trying to navigate adolescent and young adult sex with unmedicated OCD and anxiety isn't likely to be an improvement. While it might have felt dismissive, the psychiatrist understands this, but I'm not sure you do.

One of the hardest things I had to do in dealing with my own kids' mental illnesses is let it finally sink in that their baseline is forever changed. They will never return to the carefree, emotionally regulated, normal kids they were before their illnesses manifested. There will be no "getting over and getting back to normal". Hear me loud and clear though - that doesn't mean they (and your daughter) won't have a good life. My kids are young adults and are doing better than I could have hoped for during the darkest times. But they will always have it harder in every area of their life. School, work, relationships, sex, it is all more complicated, and they have to struggle harder in all those areas. This is still so hard to watch, and I still grieve the loss of my dreams for them just having to deal with normal problems. If meds make that struggle easier in some ways, that's a good thing, because the med-less alternative isn't simply a normal life.

[TechWife]

4 hours ago, mindinggaps said:

@Lecka My understanding was that she's very much willing to discuss anything, but would prefer some things be kept between parents and doctor. Basically - let's discuss some of this with no children in the room. Maybe I'm overreacting, but I am seriously considering contacting the office and requesting that we transition to a new care provider.

This is very appropriate. Children do not and cannot follow adult conversations. Misunderstanding them can cause about of problems you do not want.

It sounds as if this psychiatrist is doing a good job treating your daughter, which by necessity involves communicating with her parents and providing input on things that she observes that impact your child, such as your mental health.

Im concerned that you jump to changing docs because you are uncomfortable, not because of the treatment your daughter is receiving.
It sounds like you received some good input and that you have a lot to think about when it comes to involving your young daughter in treatment discussions that she doesn’t understand. 

[TechWife]

3 hours ago, mindinggaps said:

Yes, this was brought up in the discussion. Basically, we can discuss anything you want but I'd prefer some things be handled without the child in the room because we know she has a history of medication refusal associated with the OCD and we don't want to trigger that. Her message to me was - I am fully in favor of having her involved in the treatment but right now she is very young and this has to evolve.

Frankly, I'm fine with feeling uncomfortable, I just don't like feeling like certain lines are crossed and I question if the suggestion of referring me was too much.

The suggestion to refer you was completely appropriate. Your life impacts your daughter’s life. It’s her job to look at what is best for your daughter, and that includes looking at the entire family dynamic and how other people in the family are impacting her, as well as helping you recognize that your behaviors & concerns impact your daughter. 

Edited July 26 by TechWife

[mindinggaps]

3 hours ago, Katy said:

And make no mistake about it, your child is disabled when unmedicated. 

To be totally honest, I feel like my issues stem from the complicated mixture of emotions I have related to this statement. In many ways, even after nearly 2 years of her being diagnosed, I refuse to accept this fact. I don't want it to be true even though deep down I know it is. I hope and want it to change in the future. I hope that one day it won't be true.

And why does it bother me so much? Why am I fixated on this issue? Right now she is living an excellent life, is doing very well in school, has lots of friends and seems to have a bright future. Why cannot just accept that she has treatment and is living well? I'm not sure.....

I feel like I'm coping well because overall my life is in good shape. But reading everything here has made me realize that there are deeper issues behind the scenes. I know that right now, the issues sit with me and not my daughter.

[chocolate-chip chooky]

9 minutes ago, mindinggaps said:

To be totally honest, I feel like my issues stem from the complicated mixture of emotions I have related to this statement. In many ways, even after nearly 2 years of her being diagnosed, I refuse to accept this fact. I don't want it to be true even though deep down I know it is. I hope and want it to change in the future. I hope that one day it won't be true.

And why does it bother me so much? Why am I fixated on this issue? Right now she is living an excellent life, is doing very well in school, has lots of friends and seems to have a bright future. Why cannot just accept that she has treatment and is living well? I'm not sure.....

I feel like I'm coping well because overall my life is in good shape. But reading everything here has made me realize that there are deeper issues behind the scenes. I know that right now, the issues sit with me and not my daughter.

I have huge respect for your ability to reflect on all of the feedback given here.

[Terabith]

When my youngest child got her AP scores back, my aunt was like, "Is this the child who the so called experts said was disabled?  You should send those scores to them and be like, Ha - you were wrong!"

And both my immediate response and my daughter's were, "No.  They were RIGHT.  She is, in fact, disabled.  She has through great effort and grit and determination, done well in many domains despite her disability.  But she has not overcome it.  She still has things that she cannot do and that no amount of effort will make possible."

She has a good life.  She is thriving.  She has friends, and can hold a job and perform well scholastically, and she can do the normal tasks of daily living.  She is helpful to our household.  And without medication, she wouldn't be able to do any of those things.  And there are times and situations and tasks that she really can't do and probably never will be able to.  She has a disability.  But most of the time, with accommodations and medications, it is not crippling.  

Denying the disability feels deeply frustrating, because it implies that with enough effort, she can pull herself up from her bootstraps and function normally.  And it's simply not true.  

It is grief to accept that your child has a disability.  If you go back 12 years on the hive, you will see my posts really struggling with accepting that.  At the time, we didn't know if she'd be able to live independently.  It was hard.  It really sucked.  But we gained peace with the reality over time, and she has a good life.  We all do.  She is awesome and hilarious and helpful and kind.  

[fairfarmhand]

The hive is as helpful as any therapist I’ve ever been to. 
 

Eta: should not be a replacement for therapy but can help with processing many things. 

Edited July 26 by fairfarmhand

[mindinggaps]

Just to comment on another couple things. Firstly @Catwoman - thanks for the heartfelt comment. Reading that meant a lot to me and I appreciate your empathy. Again, I am grateful for everyone here, truly.

1 hour ago, TechWife said:

Im concerned that you jump to changing docs because you are uncomfortable, not because of the treatment your daughter is receiving.
It sounds like you received some good input and that you have a lot to think about when it comes to involving your young daughter in treatment discussions that she doesn’t understand. 

I acknowledged in an earlier post that my initial impression of this interaction was wrong. It was a lot for me to process in the moment, but I can clearly see that the doctor was trying to help and frankly I do feel her concern was really coming from a genuine and caring place. As I mentioned, I myself am concerned with my initial reaction to the situation.

For now, I do feel comfortable with the plan for my daugther. At the same time, I am cognizant that I have said that many times only to revisit the idea of weaning her off in a few months. It's not a healthy cycle. I can see this. I recognize it. I need to fix it. I'm not sure what the solution is at the moment but I am going to be focusing on myself and doing what is required to better manage this and hopefully become a better parent.

I do have a very close relationship with my child and I spent some wonderful time this afternoon checking in with her. I also told her, I made a mistake - it's important for both of us to listen to the doctor. She is fine...I just need to make sure my head is on straight moving forward.

[Ottakee]

There is grief when you have to come to terms with a child’s special needs/mental health issues.

And it is very very common and appropriate for the psychiatrist to talk to the parents without the child present.  It is not helpful for a child to sit and listen to a parent detail all of their struggles.   As they get older you can present things in an age appropriate manner and they have increasing participation in the visits but for a young child I would be worried if a psychiatrist did not do this.

[Katy]

51 minutes ago, mindinggaps said:

To be totally honest, I feel like my issues stem from the complicated mixture of emotions I have related to this statement. In many ways, even after nearly 2 years of her being diagnosed, I refuse to accept this fact. I don't want it to be true even though deep down I know it is. I hope and want it to change in the future. I hope that one day it won't be true.

And why does it bother me so much? Why am I fixated on this issue? Right now she is living an excellent life, is doing very well in school, has lots of friends and seems to have a bright future. Why cannot just accept that she has treatment and is living well? I'm not sure.....

I feel like I'm coping well because overall my life is in good shape. But reading everything here has made me realize that there are deeper issues behind the scenes. I know that right now, the issues sit with me and not my daughter.

Sometime along the way, probably as a child (because that’s when these sorts of opinions were commonly voiced), you agreed with someone you heard judging people about mental health treatment. You need to fully and completely realize that was wrong and change your opinion. Then the cognitive dissonance will end and you’ll be looking at all of this much more rationally. 

And now to go at it from a completely not-rational but spiritual angle… I have noticed MANY times in life, people get confronted over and over in life with the things they judge others about. Including myself. 

[fairfarmhand]

2 minutes ago, Katy said:

. 

And now to go at it from a completely not-rational but spiritual angle… I have noticed MANY times in life, people get confronted over and over in life with the things they judge others about. Including myself. 

Yeah. Me too. And I’ve watched it happen to countless people. Funny thing is that I don’t realize how judgy and assuming I am until I’m dealing with the situation myself and boy is that humbling.

[Lecka]

1 hour ago, Catwoman said:

And maybe you and your dh should think about giving yourselves a little total vacation from the topic and then revisit your concerns 6 months or a year down the road

I think this is a great idea.  

I would also say, just quit looking at a lot of Internet sources.  I switch to books/Kindle sometimes because it’s “not” online, and often they are going to be more parent-friendly and they are much more likely to:  weight how important information is, so there’s not going to be 50 pages about something that is really a tangent.  I think it can really be a good way to recalibrate sometimes.  

 

Even if I read some book that’s about how medication is bad, or some alternative treatment is the best thing ever, it can still be laid out better than it would be on the Internet.  
 

I also think special needs parenting memoirs can be wonderful.  Even if it’s not the same issue, often there are similarities for parents who are having to adjust to new circumstances.  I think it can be easier sometimes to see that they are being way too hard on themselves!  Also they may talk about burn out, which is an important topic, and worth it to try to avoid burn out.  Also celebrating wins!!!!!!!!!!  
 

A lot of other parenting accounts are like “oh, we had this setback, but don’t worry, it wasn’t bad at all, and my daughter still went to Harvard and the Olympics!”  

[mindinggaps]

This is pretty hard for me to write, so I'd ask for some grace, but I do want to be open and transparent about one thing which has come up many times - my own mental health. The honest truth is, I've also questioned it many times myself, probably more deeply than most people may realize.

The minute the psychiatrist mentioned referring me to someone my initial response was pure and utter fear. Fear because I don't want to be diagnosed with something, fully knowing that could be the likely outcome. Why did it make me so uncomfortable? Because I didn't want to be confronted about this, not because she did anything wrong.

Ever since my daughter was diagnosed, I have low-key wondered if I may have mild OCD myself. Many of the thought patterns and issues she deals with I see in myself, albeit in a more more mild way. Some of the struggles she dealt with in the depths of her OCD remind me of certain pains I had in my childhood. I remember being afraid of similar things. I see myself in her constantly.

There are definitely moments where I'm actually certain I have mild OCD. I see the issues unfolding before me. I know my fears over her medication are irrational. I can feel myself getting obsessed with it. There have been times when I've read my own posts here and said to myself, this person sounds totally obsessed with an issue and they are not processing it well.

And yet, I typically feel well overall. I love my life, my work, my hobbies. I'm scared of getting diagnosed because I don't want to feel shame or stigma. I'm scared of getting diagnosed because I question - what is the point? I use therapy and exercise and most of the time I feel fine. Most of the time I am fine. But sometimes, I look at things (this is one of those moments) and I say to myself - you are not fine.

I don't know if this is just the human experience or if if there is something more nefarious? Do I really want to know the answer to that question? I don't know.

But I do just want everyone to know that my head is not in the sand. I'm not oblivious. In fact I contemplate these issues more deeply than many people may know.

[maize]

OCD does have a very strong genetic component. My husband has OCD, and every one of our children has experienced OCD symptoms--some have mild symptoms, some debilitating symptoms. And of course for each individual the manifestation and severity of symptoms varies over time.

Regarding parental grief over a child's disability--it runs deep, and it will recur again and again over the years as might-have-beens and reality clash.

[Lecka]

It would not be your fault, either, if your daughter inherited it from you.  I think that is an emotion many people feel, but I don’t think that is someone’s “fault.”  I am sure your daughter would never pick anyone else to be her mother!

[Lecka]

I am remembering it after not having read it in many years, but I read an “autism dad memoir” called “Bad Animals,” and (spoiler alert)

 

The Dad realizes around the time his son is 10, that he probably also has autism!  But in my memory it was done in a sweet and tender way, like it becomes a way he is close to his son and they have something in common.  
 

Edit:  by Joel Yanofsky

Edited July 26 by Lecka

[Katy]

9 minutes ago, mindinggaps said:

 I'm scared of getting diagnosed because I question - what is the point? I use therapy and exercise and most of the time I feel fine. Most of the time I am fine. But sometimes, I look at things (this is one of those moments) and I say to myself - you are not fine.

I don't know if this is just the human experience or if if there is something more nefarious? Do I really want to know the answer to that question? I don't know.

But I do just want everyone to know that my head is not in the sand. I'm not oblivious. In fact I contemplate these issues more deeply than many people may know.

People have different struggles. But we ALL experience inner resistance to doing what is in our best interest. Paul defined it in the Bible as the flesh. I think Jung called it the shadow. The guy who wrote the War of Art called it resistance. The guy who wrote The Alter Ego Effect called it the enemy. 

So no, we don’t all struggle with OCD. But we all have something in our own best interest that we resist. 

What’s the worst thing that would happen if you called the psychiatrist, thanked her, and asked her to go ahead and write you the prescription? What if the fog of intrusive thoughts and anxiety lifts and you’re free from all of it in a matter of days or weeks? 

[Lecka]

19 minutes ago, Katy said:

People have different struggles. But we ALL experience inner resistance to doing what is in our best interest. Paul defined it in the Bible as the flesh. I think Jung called it the shadow. The guy who wrote the War of Art called it resistance. The guy who wrote The Alter Ego Effect called it the enemy. 

So no, we don’t all struggle with OCD. But we all have something in our own best interest that we resist. 

What’s the worst thing that would happen if you called the psychiatrist, thanked her, and asked her to go ahead and write you the prescription? What if the fog of intrusive thoughts and anxiety lifts and you’re free from all of it in a matter of days or weeks? 

I totally agree!

I do think you would be the same person if you did call and ask for the prescription and referral.  I don’t think it would change who you are.  

[livetoread]

42 minutes ago, mindinggaps said:

This is pretty hard for me to write, so I'd ask for some grace, but I do want to be open and transparent about one thing which has come up many times - my own mental health. The honest truth is, I've also questioned it many times myself, probably more deeply than most people may realize.

Your bravery is an inspiration and your daughter is lucky to have you. I hope you realize that and tell yourself that especially when things are tough. She has an excellent chance of flourishing, in part, because she has a mom modeling how to be honest and self-reflective, even when it sucks. Seriously, you rock.

[chocolate-chip chooky]

47 minutes ago, mindinggaps said:

This is pretty hard for me to write, so I'd ask for some grace, but I do want to be open and transparent about one thing which has come up many times - my own mental health. The honest truth is, I've also questioned it many times myself, probably more deeply than most people may realize.

The minute the psychiatrist mentioned referring me to someone my initial response was pure and utter fear. Fear because I don't want to be diagnosed with something, fully knowing that could be the likely outcome. Why did it make me so uncomfortable? Because I didn't want to be confronted about this, not because she did anything wrong.

Ever since my daughter was diagnosed, I have low-key wondered if I may have mild OCD myself. Many of the thought patterns and issues she deals with I see in myself, albeit in a more more mild way. Some of the struggles she dealt with in the depths of her OCD remind me of certain pains I had in my childhood. I remember being afraid of similar things. I see myself in her constantly.

There are definitely moments where I'm actually certain I have mild OCD. I see the issues unfolding before me. I know my fears over her medication are irrational. I can feel myself getting obsessed with it. There have been times when I've read my own posts here and said to myself, this person sounds totally obsessed with an issue and they are not processing it well.

And yet, I typically feel well overall. I love my life, my work, my hobbies. I'm scared of getting diagnosed because I don't want to feel shame or stigma. I'm scared of getting diagnosed because I question - what is the point? I use therapy and exercise and most of the time I feel fine. Most of the time I am fine. But sometimes, I look at things (this is one of those moments) and I say to myself - you are not fine.

I don't know if this is just the human experience or if if there is something more nefarious? Do I really want to know the answer to that question? I don't know.

But I do just want everyone to know that my head is not in the sand. I'm not oblivious. In fact I contemplate these issues more deeply than many people may know.

It takes so much courage to think about all of this, and it takes extra courage to think out loud about it.

I have so much respect for you, and I truly wish you and your daughter all the best.

[freesia]

1 hour ago, mindinggaps said:

This is pretty hard for me to write, so I'd ask for some grace, but I do want to be open and transparent about one thing which has come up many times - my own mental health. The honest truth is, I've also questioned it many times myself, probably more deeply than most people may realize.

The minute the psychiatrist mentioned referring me to someone my initial response was pure and utter fear. Fear because I don't want to be diagnosed with something, fully knowing that could be the likely outcome. Why did it make me so uncomfortable? Because I didn't want to be confronted about this, not because she did anything wrong.

Ever since my daughter was diagnosed, I have low-key wondered if I may have mild OCD myself. Many of the thought patterns and issues she deals with I see in myself, albeit in a more more mild way. Some of the struggles she dealt with in the depths of her OCD remind me of certain pains I had in my childhood. I remember being afraid of similar things. I see myself in her constantly.

There are definitely moments where I'm actually certain I have mild OCD. I see the issues unfolding before me. I know my fears over her medication are irrational. I can feel myself getting obsessed with it. There have been times when I've read my own posts here and said to myself, this person sounds totally obsessed with an issue and they are not processing it well.

And yet, I typically feel well overall. I love my life, my work, my hobbies. I'm scared of getting diagnosed because I don't want to feel shame or stigma. I'm scared of getting diagnosed because I question - what is the point? I use therapy and exercise and most of the time I feel fine. Most of the time I am fine. But sometimes, I look at things (this is one of those moments) and I say to myself - you are not fine.

I don't know if this is just the human experience or if if there is something more nefarious? Do I really want to know the answer to that question? I don't know.

But I do just want everyone to know that my head is not in the sand. I'm not oblivious. In fact I contemplate these issues more deeply than many people may know.

Wow! Thank you for being so honest. Everyone has said all the things I would say to you. My anxiety kept me from getting help for years. When I did, it was some awesome for all of us. Really. There’s a lot of rhetoric in some circles about all medications being bad. I know your dh feels that, too. It can be really scarey to break away from all that. Have you discussed that issue with your therapist? She could help you evaluate the pros and cons and see if you have any cognitive distortions surrounding the issue. 

[Spryte]

@mindinggaps You are very brave and strong to be so honest in your posts.

 

 

[ScoutTN]

5 hours ago, Hilltopmom said:

That is totally normal- to have a discussion without the very young child in the room. That has how it’s been at most of my kids appointments when they were younger and taking meds. Kids do not need to hear every single thing- and for kids being treated for anxiety, OCD, depression parents need to have frank Talks with doctors specifically without the child over hearing. Everyone can speak more candidly that way.

Yes. 
My son’s psych appointments are almost always structured for the doc to see him alone and me (or me and Dh) without Ds. Not unusual. An 8 yo should have child-appropriate information, but not be in the decision-making loop. That’s what parents are for. Teens get eased into the process so that they are ready for young adult independence, but you all are a long way from that.

[Clemsondana]

I appreciate that you are dealing with a lot, and I just wanted to add a bit to the idea of looping your child into all of the conversations.  I have a kid who has ADHD.  Kid was a teen before we really figured out that this wasn't normal kid and tween difficulty, so kid was included in the vast majority of discussion.    

Kids can latch on to phrases and build whole arguments around them that don't make sense.  Phrases from a doctor take on a lot of weight for a kid, and 'They may need this the rest of their life' turns in to 'I'll never be normal - the doctor said!' or, alternatively, a reassuring phrase can be turned in to 'See, there's nothing wrong with me - everybody has problems - I don't need medicine'.  And, if parents disagree with each other or with the doctor, it can cause the kid to distrust the treatment.  Parents and doctors may have differing ideas that they need to discuss, and it's completely appropriate for adults to have these discussions with medical providers.  But, a kid who doesn't see a unified front may not believe that the treatment is correct.  Or they may try to play one opinion against another if they decide that they don't want to take the medicine, or think that they need a different dose.  

With our particular situation, I don't think that there was much option about the child being involved in the dicussions.  But, having seen the issues that can occur, I can definitely see matters that would be best handled without the child present.  

Hang in there - hopefully your family will find a peaceful pathway forward.  

[Jaybee]

6 hours ago, mindinggaps said:

To be totally honest, I feel like my issues stem from the complicated mixture of emotions I have related to this statement. In many ways, even after nearly 2 years of her being diagnosed, I refuse to accept this fact. I don't want it to be true even though deep down I know it is. I hope and want it to change in the future. I hope that one day it won't be true.

And why does it bother me so much? Why am I fixated on this issue? Right now she is living an excellent life, is doing very well in school, has lots of friends and seems to have a bright future. Why cannot just accept that she has treatment and is living well? I'm not sure.....

Several other posters have also said this, but I think so much of it is grief. Grief can often be a real part of parenting:

when your child has mental illness

when your child has a different personality from you and you don't understand them

when your child gets cancer or some other disease/condition

when life isn't turning out like you dreamed it would, even in small ways

when you wanted to breastfeed but weren't successful

The scenarios are endless. There is a phrase often quoted here, "You teach the child you have." It's usually said in the context of our needing to adjust what we "wanted" to include in our child's education with what our child really needs or is interested in. That applies to parenting as well: "You parent the child you have." It doesn't mean you wish you didn't have that child, but it does mean you have to adjust your mindset.

Now to change gears a little. While this is really hard for you, it is so good for your daughter that you are getting the care she needs. I know a young person who began dating a young lady. Things seemed to get rather serious rather quickly. But this young lady had a diagnosed but untreated mental illness. It affected the relationship more and more over time, in both small ways and bigger ones. She was offended when the young man suggested that she needed to see someone about it. It came to the point that her refusal to seek help caused the relationship to end. Sometimes she felt that he was trying to tell her what to do, or that he was trying to change her. However, she could not see in how many, many ways and how deeply this illness affected her and her interactions, and her refusal to accept that she needed help caused her to have to be hurt. It was sad and hurtful to everybody involved. I don't know the reasons why her illness had gone untreated--her parents were loving and kind. It seemed complicated.

You are giving your dd a gift by getting her the help she needs when she is young. From seeing how you are being so honest here, I believe that you will be able to accept that this is just how things are, and this is just what must be done. Hopefully, by your example, she, too, will accept that, and will be in a much better position than the young woman I referenced above to give and receive love, to embrace life more fully, even if it doesn't look quite like the dreams did.

[Lecka]

I wonder if any of this would make sense:

In autism, 10 years ago, there were broadly two choices, in the two places I lived:

Choice # 1, a mainstream treatment.  You talk to a woman (who Choice # 2 parents universally made a comment about her being cold or abrasive when they met her.). She tells you they see a lot of progress with kids, but they can’t tell you how much progress “your” child will make.  She tells you it will probably be a slog, but her agency will value your child and want to help your child and family.  If asked, she would state bluntly your child has autism and they are more about helping someone with autism live his/her best life.  
 

Choice # 2, an alternative treatment.  Usually the person is charismatic and gets along well with parents.  They say it might take a while to find the right exact thing, but when they find it, kids make extreme progress.  Examples of extreme progress are given as anecdotes.  Or “cure” or “remission” are said to be common outcomes.  (The woman from # 1 basically would say, yes she has seen this in her career, but she’s just not going to entertain talking about it with parents because it is pretty rare.)

 

For various reasons, including our insurance, and what the people at the autism clinic said when my son was diagnosed…. I went with # 1 but remained # 2 curious.  My son did well with # 1, though.  
 

However in talking to # 2 parents, many of them said the same things.

”I don’t want to give up on my child.”  Choosing a treatment where the “best outcome” would be “progress and many positive outcomes” felt like giving up.  Choosing something with “cure” or “remission” didn’t feel like giving up.

”I want to feel like I’m doing everything I possibly can to help my child.  I want to look back and know I did everything I could.”  This meant trying alternative treatments.  
 

“I want to have hope for the future.”  
 

I have never felt like I “gave up on my child,” but it did come across that way to some people.  Not me specifically, they did not have a low opinion of me.  But they thought, if they did what I was doing, that is how they would feel.  
 

After a while, I consciously was not “doing everything I could” with conscious decisions around “there is more to life than making every decision around autism treatment” and “I have two other kids.”  I do think this was a good choice for me to make.  
 

I do have hope for the future.  
 

Separately, for the alternative treatments, it’s always either new, or based on a hypothesis.  In this way, it is difficult to disprove.  In this way, there IS also the chance it will turn out to be right!  
 

For the alternative treatments I think worked for some people… the person doing it was a warm, caring person and this can often be a wonderful thing.  The child turned out to have allergies.  The child turned out to have stomach issues.  And then with allergies or stomach issues being addressed, they slept better.  I have seen these be very positive for people.  But my son always slept well, and had no signs of stomach issues or allergies, so it didn’t seem realistic to me.  
 

But overall, just the number of times someone has said “I can’t give up on my child,” is so high.  I do wonder if that is what’s going on.  
 

I think I am someone who “wants to do the right thing” and to me that means I want to do something that is considered the right thing!  But I’m more likely to think something that seems researched is “the right thing.” I do not know why that is.  

[mindinggaps]

17 hours ago, Jaybee said:

Several other posters have also said this, but I think so much of it is grief. Grief can often be a real part of parenting

@Jaybee Thank you for the wonderful comment. I really appreciated reading this. I fully agree with you that much of what I'm processing is tied deeply to grief. The refusal to accept the reality of the situation, the frustration and the subsequent toll to my own mental health have all been part of the process of grief.

However, when I take a step back, grief over what exactly? The reality is that right now it appears my daughter has every ability to live a completely full, happy and healthy life. I don't believe her having OCD will limit her from achieving anything she wants in life. She is very bright, hard working, learns quickly and appears to be doing very well socially with others. Right now, there's nothing holder her back at all. So, what am I grieving exactly? Why am I so perturbed by the fact that she needs to take a pill in the morning?

The last few days have really helped me reflect a lot and I've been trying to dig more deeply into these questions. I can clearly see that right now the biggest risk to her thriving isn't her OCD, it's me somehow interfering and mismanaging her treatment. So, my focus right now is definitely inwards.

My husband and I had a long talk today and there's recognition from both of us about mistakes and misjudgements we've made along the way. At the same time, we are both proud of the growth we've made together. We're far from perfect, but we've been learning together and continue to push toward doing the absolute best we can.

I am speaking with my therapist on Monday to unpack the last few days. I think in some ways the psychiatrist pulling me aside was one of those jolts that I very much needed. I've at least considered accepting her offer for help - whether I need it or not, I'm still not sure, but rather than being upset by this, I am happy that door is available.

 

[Jaybee]

7 minutes ago, mindinggaps said:

However, when I take a step back, grief over what exactly?

Sometimes it's just grief over what you thought things were. Or maybe your former self that didn't know about all the things you have to think about now. But it sounds like you are doing so great at thinking through things and growing. I'm going to send you a DM that I started to put on here, but I'd rather it stay private.

 

[mindinggaps]

7 minutes ago, Jaybee said:

Sometimes it's just grief over what you thought things were. Or maybe your former self that didn't know about all the things you have to think about now. But it sounds like you are doing so great at thinking through things and growing. I'm going to send you a DM that I started to put on here, but I'd rather it stay private.

 

Please feel free to DM me!

[wendyroo]

10 minutes ago, mindinggaps said:

I've at least considered accepting her offer for help - whether I need it or not, I'm still not sure, but rather than being upset by this, I am happy that door is available.

As you think about this, perhaps consider whether your daughter needs you to accept help, even if you personally could manage without it.

If some of your turmoil right now is based on bias and stigma and fear that you unconsciously picked up as a child, then you seeking help now could be a huge step toward making sure your daughter does not learn that same stigma during her childhood. Your thought patterns right now could be inadvertently passing that fear on to your daughter...which could lead to her struggling down the road to accept her own diagnosis or that of her kids.

[KSera]

1 hour ago, mindinggaps said:

I think in some ways the psychiatrist pulling me aside was one of those jolts that I very much needed. I've at least considered accepting her offer for help

I just want to provide a counter balance to the majority of comments here and say that if you don’t want or feel you need medication yourself, that’s not the only way of receiving help, nor is it somehow more valid than any of other options for help with the issues you’re having. The important thing is getting help when you need it. Your dd was unable to get stable and be living well without medication, but with it she is doing well, so it doesn’t make sense to take her off it. I don’t think that means you have to do the same thing yourself. I didn’t agree with the comment that someone was “sure” you would be helped by the same medication your dd was. Given the tremendous variation in how people respond to psychiatric medications, there’s no way anyone can be sure of that, and I’m sure even the psychiatrist wouldn’t make such a statement.
 

It might be that medication ends up being helpful to you, and if it is, that’s a good thing, but I still think people tend to be very flip about the reality of downsides as well. I like the chemotherapy analogy—life saving when needed, but that doesn’t mean it doesn’t  carry risks and that it shouldn’t only be used if necessary. 
 

@TechWife Way above, you asked for sources for something and I was waiting to get to my computer to get them for you, but by the time I did, the conversation had moved on, and I didn’t want to bring up something that might be detrimental to OP’s decision making, so I deleted your quote and moved on. If you still want them, PM me and I’ll send them your way. 

[Clarita]

1 hour ago, mindinggaps said:

So, what am I grieving exactly? Why am I so perturbed by the fact that she needs to take a pill in the morning?

To grieve something sometimes just means you need to come to terms with it. The coming to terms with it just brings about big emotions, not that the situation would be sad to anyone else. It's just to recognize the reality and then sit with the feelings that it brings us. 

[Lecka]

2 hours ago, KSera said:

yourself. I didn’t agree with the comment that someone was “sure” you would be helped by the same medication your dd was. Given the tremendous variation in how people respond to psychiatric medications, there’s no way anyone can be sure of that, and I’m sure even the psychiatrist wouldn’t make such a statement

To discuss this further,

1) many conditions have a common first-line treatment.  It can be realistic to think a common first-line treatment will be likely to be prescribed.  
 

2) family members often respond well to the same medication, in psychiatric medications, and all things being equal, it can be a way to choose between options.

 

I haven’t taken anything as too pushy.  Plus, these are prescribed medications, this isn’t like supplements where people are clearly going to go and start ordering stuff or buying stuff, based on discussions here.  

 

At the same time, I think it’s good to have a variety of opinions be able to be expressed!  It’s always nice when that can happen on the Internet!  

 

 

[mindinggaps]

19 hours ago, wendyroo said:

As you think about this, perhaps consider whether your daughter needs you to accept help, even if you personally could manage without it.

Thank you - this is a powerful statement and I've certainly been thinking about it very deeply.

@KSera Thank you for your comment. As I continue to reflect on things and evaluate how to proceed forward the question which I am most deeply pondering is what does receiving help look like for me? Therapy has been a fantastic tool for me, along with daily exercise and both of those will continue. Is something else required? I'm still quite far from thinking that medication is absolutely needed and I do have fears about side effects and negative consequences.

However, as recently as 48 hours ago when asked if I would even consider medication as an option, I said a no, absolutely not. Never. I've done enough soul searching to see that answer  is not healthy at all. I've come to the point where I am at least open to considering this as an option if it will help me be the best version of myself not only me, but those around me.

I find it genuinely hard to evaluate everything in isolation. It's hard to know if you need something. It's hard to know whether benefits outweigh risks. I suppose talking to a professional is really the only way to answer those questions.

[Lecka]

You are a functional adult who is in fact managing a child’s treatment.  
 

You have not been evaluated yet.

 

I think it’s very fair to think medication is not a step to consider right now.  
 

As far as being evaluated, locally, I think you could see a psychologist for an evaluation and to discuss possible treatment.  Locally a psychologist doesn’t prescribe medication.  
 

However you have a referral for a psychiatrist and can get in easily — that has a lot going for it, in my opinion.  You could have an evaluation appointment and discuss treatment options.  It doesn’t mean you’ve already decided to take medication.  You could actually ask questions you have about possible negative consequences.  
 

You could actually ask questions about “how do people decide their symptoms are severe enough to warrant treatment vs choosing to manage their symptoms without treatment.”  Obviously there is personal choice involved and two people with the exact same level of symptoms and the exact same ability and life situation to manage their symptoms without medication ——- can make a different choice.  However there may be certain levels of severity that can be discussed.  There may be certain levels of “here’s how it IS impacting my life right now” that can be discussed.  
 

For all anyone knows — you could leave with a sense of “if it gets as bad as x, I do want to come back for medication” and in the meantime feel like that’s a good decision.  Or maybe decide to do some other form of treatment.  Or decide to attend a support group.  Or decide to read a book.  Or decide to discuss all this with a therapist who doesn’t do some kind of “OCD treatment.”

 

It is not “already deciding to take medicine.”  
 

However, I do think, seeing a psychiatrist is more on the side of — thinking it’s likely to walk out with a prescription for medication.

 

Going to a psychologist for an evaluation wouldn’t be that way here, you would walk out with treatment recommendations, a diagnosis, and this could include a discussion about seeing a psychiatrist (or other professional) for medication.  
 

It’s definitely possible to explore the idea, and explore “what people think about the question of when medication is warranted, plus decisions to manage without medication.”  Without having to feel like taking another step is just equated to “it means taking medication.”  
 

Edit:  maybe there are support groups, maybe there’s a way to talk to people who have grappled with these decisions.  Maybe there’s a website with a discussion board.  I don’t know, but there may be stuff out there that is a high quality.  
 

Some people feel like they are fine for themselves, but it’s better for a family member if they take medication, because it makes things easier or better for the family member in some way.

 

Some people like a medication but stop anyway because of side effects.

 

There are so many things that can make a difference and people are allowed to make the decision they choose.  

Edited July 28 by Lecka

[Katy]

21 hours ago, Lecka said:

You are a functional adult who is in fact managing a child’s treatment.  
 

You have not been evaluated yet.

 

I think it’s very fair to think medication is not a step to consider right now.  
 

As far as being evaluated, locally, I think you could see a psychologist for an evaluation and to discuss possible treatment.  Locally a psychologist doesn’t prescribe medication.  
 

However you have a referral for a psychiatrist and can get in easily — that has a lot going for it, in my opinion.  You could have an evaluation appointment and discuss treatment options.  It doesn’t mean you’ve already decided to take medication.  You could actually ask questions you have about possible negative consequences.  
 

You could actually ask questions about “how do people decide their symptoms are severe enough to warrant treatment vs choosing to manage their symptoms without treatment.”  Obviously there is personal choice involved and two people with the exact same level of symptoms and the exact same ability and life situation to manage their symptoms without medication ——- can make a different choice.  However there may be certain levels of severity that can be discussed.  There may be certain levels of “here’s how it IS impacting my life right now” that can be discussed.  
 

For all anyone knows — you could leave with a sense of “if it gets as bad as x, I do want to come back for medication” and in the meantime feel like that’s a good decision.  Or maybe decide to do some other form of treatment.  Or decide to attend a support group.  Or decide to read a book.  Or decide to discuss all this with a therapist who doesn’t do some kind of “OCD treatment.”

 

It is not “already deciding to take medicine.”  
 

However, I do think, seeing a psychiatrist is more on the side of — thinking it’s likely to walk out with a prescription for medication.

 

Going to a psychologist for an evaluation wouldn’t be that way here, you would walk out with treatment recommendations, a diagnosis, and this could include a discussion about seeing a psychiatrist (or other professional) for medication.  
 

It’s definitely possible to explore the idea, and explore “what people think about the question of when medication is warranted, plus decisions to manage without medication.”  Without having to feel like taking another step is just equated to “it means taking medication.”  
 

Edit:  maybe there are support groups, maybe there’s a way to talk to people who have grappled with these decisions.  Maybe there’s a website with a discussion board.  I don’t know, but there may be stuff out there that is a high quality.  
 

Some people feel like they are fine for themselves, but it’s better for a family member if they take medication, because it makes things easier or better for the family member in some way.

 

Some people like a medication but stop anyway because of side effects.

 

There are so many things that can make a difference and people are allowed to make the decision they choose.  

Please stop. When a doctor is suggesting she needs meds because her clearly expressed anxiety isn’t based in facts or logic, who are you to argue that she’s not undermining her daughter’s well being or that she is managing anything well? She’s making steps towards doing what is right, and you are actively arguing that a physician much more familiar with this family than you are is wrong. None of them are your patient. 
 

I’m not suggesting that doctors never be questioned. But in the scope of what is best for this family specifically, what are you trying to do here except undermine competent medical care? 

[KSera]

48 minutes ago, Katy said:

When a doctor is suggesting she needs meds

Of course a psychiatrist is likely to suggest meds as the solution, as that's what they do. Just like if you go to a physical therapist for a back problem they're going to suggest PT and if you go to a chiropractor they're going to suggest chiropractic treatments. Honestly, psychiatry just isn't an area of medicine that's as settled as one might think. I mentioned above about some studies finding that relapse is more common for those taking medication than for those that receive therapy for their depression. (An example study: Prevention of relapse following cognitive therapy vs medications in moderate to severe depression ). The chemical imbalance theory of mental illness is not something that has been proven, and particularly interesting is that placebo response in trials is strongest of all for trials of antidepressants. It's frequently found that antidpressants perform no better than placebo in trials (but that the placebo helps significantly!) They are still trying to theorize why that is, but it's actually pretty interesting.

In OP's case, her dd has already shown a real need for the medication and that discontinuing had a very negative impact (another interesting thing is that OCD is one of the conditions where the placebo effect isn't as strong as it is for depression and anxiety). OP isn't in the same situation as her dd though. It might be a good choice for her, or there might be another treatment that is better. When a psychiatrist dismisses side effects or discontinuation effects, that hampers trust, and it's something a lot of them do. It's kind of stunning to me the degree to which so many psychiatrists are out of touch with how hard withdrawal is for about half of patients; psychiatrists almost always  give instructions for stopping that make it like it is no big deal and suggest a much faster taper than most people can handle well. We have experienced that several times here, and it's a bit maddening. This quote from a psychiatrist who eventually experienced this himself is telling:

Quote

“It took me a year to come completely off — a year,” said Dr. Tom Stockmann, 34, a psychiatrist in East London, who experienced lightheadedness, confusion, vertigo and brain zaps, when he stopped taking Cymbalta after 18 months.

 

To wind the prescription down safely, he began opening the capsules, removing a few beads of the drug each day in order to taper off — the only way out, he decided.

“I knew some people experienced withdrawal reactions,” Dr. Stockmann said, “but I had no idea how hard it would be.”

(From Many People Taking Antidepressants Discover They Cannot Quit)

So, while I have family members who have benefited from medications like this, and I have consistently supported OP here in continuing them for her dd, I disagree anyone can say medication is definitely the best path for OP just because a doctor whose profession is prescribing psychiatric medications suggested she consider it.

[maize]

I agreed with @KSera. Psychiatry is very much a discipline still in its infancy--in spite of the very real progress that has been made over the past century. I have seen medication work wonders. I have seen medication fail abysmally.  I have seen medication make things worse.

Good psychiatrists know the limitations of their field. They know that even our best researchers don't have a firm understanding of how and why medications work or don't work, in general or in individual cases. Brains are incredibly complex.  

The best advice I have to offer is to always weigh in the balance the side effects of not trying medication.  Everyone worries about the side effects of medication. Anyone who has seen the utter devastation that mental illness can wreak in the lives of primary and secondary victims knows that side effects of medicating are not the biggest factors to consider.

It would sure be a lot simpler though if there was a guarantee that medication would work!

[fairfarmhand]

I will say this…the people I know who struggled with mental stuff and were resistant to taking meds always thought they were doing better on the average day than they actually were. But their family and friends kinda knew that things weren’t exactly right. And then when crap hit the fan, all of a sudden it was quite clear to everyone that the person was definitely not ok. 

[freesia]

1 hour ago, fairfarmhand said:

I will say this…the people I know who struggled with mental stuff and were resistant to taking meds always thought they were doing better on the average day than they actually were. But their family and friends kinda knew that things weren’t exactly right. And then when crap hit the fan, all of a sudden it was quite clear to everyone that the person was definitely not ok. 

I agree. I can also say that on reflection, the families I know where the parents were staunchly anti-medicine all had a parent who struggled/struggles with anxiety. I think it’s part of the magnification distortion (magnifying the harm of the drugs while minimizing the harm of not medicating.) It can also be black and white thinking. it’s really worth sorting out risk with a counselor in these cases. 

[Lecka]

4 hours ago, Katy said:

Please stop. When a doctor is suggesting she needs meds because her clearly expressed anxiety isn’t based in facts or logic, who are you to argue that she’s not undermining her daughter’s well being or that she is managing anything well? She’s making steps towards doing what is right, and you are actively arguing that a physician much more familiar with this family than you are is wrong. None of them are your patient. 
 

I’m not suggesting that doctors never be questioned. But in the scope of what is best for this family specifically, what are you trying to do here except undermine competent medical care? 

I do agree with all of this.

My problem is I…. I don’t know, “talked into” is way too strong….

Someone to take medicine….

And once he was doing better, he quit taking the medicine, didn’t tell anyone, basically pretended like he was still taking it, including to the person prescribing….

Once he was stable for about 6 months he didn’t think he needed it anymore.  He also had a side effect of some weight gain.

But instead of talking about this with the person prescribing the medicine, he just quit taking the medicine.  
 

Then he switched to another medicine, with no weight gain, but he is talking to the person prescribing the medicine about going off of it, which is really different than just stopping taking it…. This is more of a good deal where he is having the conversation with the person….  
 

So I’m feeling like — choice # 1, to me, is just get on board.  
 

But if somebody is not on board — they are not on board.

 

Then I would rather think they would talk to a professional who could give them feedback and who is not necessarily “the psychiatrist has one hammer and it’s medicine.”  This is not my view of psychiatrists but I can understand that view, and if somebody feels that way, then they are going to feel that way.  
 

If “my” person didn’t have a good rapport with the person prescribing medicine, I think it would be bad, and she is really willing to go into this with him, says it’s his process, says he’s the one taking the medication, etc. 

 

But it’s also a different situation.  
 

But this is where I’m coming from.  I have had a failure of not being open to doubts and questioning of “is this what I want to do.”  
 

But I don’t want to introduce this if it’s not there, at all. 
 

I don’t know.  

Edit:  I’ve had my own things making decisions about a child’s therapy, and a different (young adult) child who is making his own choices about medication.  

 

Edited July 29 by Lecka

[mindinggaps]

Dear all - I'm going to post an update soon but I may do so in a new topic since this is no longer about my daugther at all and instead about me.