Burned out dealing with daughter's mental health struggles

[mindinggaps]

Apologies for what is a bit of a venting, but I'm just feeling utterly worn down and exhausted managing my daughter's OCD. The change in routine with school has been hard on her and has both exacerbated her existing obsessions and created new ones. We'll get through it but it feels like we have to focus on just getting through each day.

We're doing everything we can for treatment. She is on a fairly heavy dose of Prozac and has been taking that regularly - it helps tremendously but isn't perfect. She is in ERP and we are hoping with time that will help, but right now it doesn't seem to be overly beneficial. The psychiatrist mentioned we could add on another medication such as Lamictal or Abilify but I'm pretty hesitant to go that route.

 

[Ottakee]

3 minutes ago, mindinggaps said:

Apologies for what is a bit of a venting, but I'm just feeling utterly worn down and exhausted managing my daughter's OCD. The change in routine with school has been hard on her and has both exacerbated her existing obsessions and created new ones. We'll get through it but it feels like we have to focus on just getting through each day.

We're doing everything we can for treatment. She is on a fairly heavy dose of Prozac and has been taking that regularly - it helps tremendously but isn't perfect. She is in ERP and we are hoping with time that will help, but right now it doesn't seem to be overly beneficial. The psychiatrist mentioned we could add on another medication such as Lamictal or Abilify but I'm pretty hesitant to go that route.

 

I love Lamictal.  It has been a life changer here for mood and learning

[mindinggaps]

11 minutes ago, Ottakee said:

I love Lamictal.  It has been a life changer here for mood and learning

At our most recent appointment, it was brought up as an option since we've pushed the Prozac as high as we can right now. I'm a little reticent to introduce another medication into the mix - the concept makes me apprehensive, but perhaps it needs deeper consideration. I'm really not sure to be honest.

[Kassia]

Big hugs to you.  That sounds very hard and you've already been though a lot with dd.  Please don't apologize for venting.  I think many of us are here to get and give support to each other.  That's one of the wonderful things about this community.  

[Farrar]

If you don't have a therapy relationship for yourself, consider getting one.

If you have a close friend/family member who can just be your dumping person, I suggest you warn them that you really need them to be there for you. 

I think you should feel free to vent here as much as you need to. Anyone would find that all very hard.

[Miss Tick]

51 minutes ago, Ottakee said:

I love Lamictal.  It has been a life changer here for mood and learning

I'm familiar with Lamictal, but not with this use for it. Can you tell me what affect it has on mood and learning? I was told that it can cause rage in some cases, so I'm surprised to hear it can also have beneficial effects?

[Paige]

Has she tried fluvoxamine? It's more for OCD than prozac. I'd probably want to try a medication switch rather than add something to a maxed out prozac unless you've already tried a bunch of meds and don't this was the best.

[mindinggaps]

3 minutes ago, Miss Tick said:

I'm familiar with Lamictal, but not with this use for it. Can you tell me what affect it has on mood and learning? I was told that it can cause rage in some cases, so I'm surprised to hear it can also have beneficial effects?

@Miss Tick I think @Ottakee is likely to have some interesting information on this, but based on my limited understanding it operates as a mood stabilizer, particularly for treatment of bipolar disorder. However, our psychiatrist said it can be added on to SSRI treatment for OCD, anxiety and depression.

Overall, she is doing okay on the Prozac, so a little hesitant to add other medications on, but the psych mentioned there are many options to help with OCD.
 

[sweet2ndchance]

I'm on maxed Effexor and Abilify. The Abilify really does help a lot with my mental health problems (depression and anxiety). I'm hesitant to take medications too but Abilify has been a game changer for me. It really does help a lot.

[mindinggaps]

3 minutes ago, Paige said:

Has she tried fluvoxamine? It's more for OCD than prozac. I'd probably want to try a medication switch rather than add something to a maxed out prozac unless you've already tried a bunch of meds and don't this was the best.

We did discuss switching meds, but overall she has done really well on the Prozac. It's helped reduce her OCD symptoms dramatically and she responded very well overall with limited side effects. Because of this, we're all hesitant to try another SSRI since we have one which works. From a treatment perspective, ideally, we can leave it with just the Prozac and manage her other symptoms through therapy. The option of adding another med was brought up by the psychiatrist as an option, but certainly not a necessity.

[maize]

There are no easy answers where mental health is concerned. 

Are you currently homeschooling?

If school is causing significant stress,  dial back on school.  In the ranking of priorities,  schoolwork doesn't come anywhere close to mental health.  Mental health has to be absolute top priority.

 

[mindinggaps]

4 minutes ago, maize said:

There are no easy answers where mental health is concerned. 

Are you currently homeschooling?

If school is causing significant stress,  dial back on school.  In the ranking of priorities,  schoolwork doesn't come anywhere close to mental health.  Mental health has to be absolute top priority.

 

At the moment she is in public school. We did do homeschooling but made the transition away from this last year because we thought it would help her...longer term the plan is unclear, maybe we will switch back, I am not sure. I think the change of routine is very hard for her. We are certainly not pushing aggressively on school at the moment.

No easy answers indeed. Up to this point, I have been very happy with the psychiatrist and therapist, but did feel a little frustrated with the suggestion to just add on another medication.

[maize]

Does she have an IEP or 504 plan for school?

One of my kids had her anxiety and OCD go through the roof the year I put her in school (5th grade). The school worked with us to try to lower her stress; she was exempted from homework,  had permission to go to the resource room when stressed, etc.

She made it through the year but there were so many meltdowns. I didn't send her back the next year; for her, stress has been lower at home.

[rebcoola]

My oldest just added Gabpentin as needed on top of her prozac for moments of stress.

[maize]

A couple of my family members have done abilify on top of an ssri. It did help with anxiety, but for both it left them feeling tired all the time. They didn't stick with it. 

Medications are what psychiatrists do. They really don't have many other tools to offer, especially for kids (there are a few other options such as TMS for adults). It's very standard practice to suggest adding a second medication.

And it never actually resolves the problem completely.  Unfortunately,  brains are complicated and psychiatry has barely scratched the surface of understanding and treating brain malfunctions. OCD is notoriously difficult to manage. 

I wish I had more encouragement to offer.  I'm in the trenches as well.

[Ottakee]

1 hour ago, Miss Tick said:

I'm familiar with Lamictal, but not with this use for it. Can you tell me what affect it has on mood and learning? I was told that it can cause rage in some cases, so I'm surprised to hear it can also have beneficial effects?

Lamictal is often hmused as a mood stabilizer for bipolar.  It hits the depression side without causing mania.  It also helps with anxiety.    Often used in combination with lithium for bipolar.

It is also a seizure med and my one taking it has a diagnosis of complex partial seizures.

as to how it affects the learning, I can’t really say why but once we started in it child gained academic skills quickly.  At one point we did a med wash and once Lamictal was gone child lost ability to read.   Added Lamictal back and child regained ability to read.

Now mine are zebras or Zorses  or unicorns when it comes to medical stuff as they tend to respond differently than many.

[chocolate-chip chooky]

@mindinggaps  

Please don't apologise. This is a really supportive place to vent your exhaustion, frustration and worry. 

Those of us in the OCD trenches with you really get it. 

Please PM me if you need to vent in a private space. You're not alone. 🌻

[mindinggaps]

@maize

56 minutes ago, maize said:

Does she have an IEP or 504 plan for school?

She's actually doing very well in school in some sense. She is hitting all academic milestones and performing above grade level in reading and math. Unfortunately, it's really her day to day functioning that is a struggle - fear of germs, hand washing, general anxiety, etc.

53 minutes ago, maize said:

Medications are what psychiatrists do. They really don't have many other tools to offer, especially for kids (there are a few other options such as TMS for adults). It's very standard practice to suggest adding a second medication.

Yes, you are exactly right. Starting her on the Prozac was such a difficult decision and I am struggling with the notion that another medication may be required. I do question the necessity and if it is the right choice. As you say, this is the tool the psychiatrist has to offer, but I don't think I am quite there yet. The psych very much put it as an option and said trialing Abilify, Risperidone or Lamictal would be her recommendation, but it's not necessary by any means. We'll consider but are not rushing into anything right now.

@chocolate-chip chooky I truly cannot thank you enough - you have been so kind.

[maize]

A 504 plan can address non-academic challenges at school; if there are things during the day that are particularly hard for her you might be able to target those areas.

[Wishes]

504s offer accommodations; such as:

Providing emotional support

• Encourage the student to use self-calming or anxiety-reducing techniques that were taught by a counselor or therapist.
• Allow the student to have a self-calming object or family pictures on hand.
• Build in “call home” breaks (for students with separation anxiety).
• Let the student seek help from a designated staff member with mental health expertise when feeling anxious.

Classroom setup, schedules, and routines

• Provide classroom seating where the student is most comfortable (near a door, near the front of the room, near the teacher or a friend).
• Let the student sit near the back of the room or by an exit during assemblies.
• Assign the student a designated buddy for lunchtime, recess, and/or hallways.
• Allow preferential grouping for field trips so the student is with a teacher or friends.
• Provide a “take a break pass” to let the student walk down the hallway, get a drink, or leave the classroom when needed.
• Create a plan for catching up after an absence or illness (for example, excusing missed homework or having a known time frame for making up work).
• Give advance notice of planned substitute teachers or other changes in routine.
• Give the student notice and extra time before upcoming transitions, like before recess and lunch, and rehearse transitions in a private or low-stress environment.

Giving instructions and assignments

• Clearly state and/or write down classroom expectations and consequences.
• Break down assignments into smaller chunks.
• Check in frequently for understanding and “emotional temperature.”
• Provide a signal before calling on the student and a signal for the student to opt out of answering.
• Offer written instructions in addition to spoken directions.
• Exempt the student from reading aloud or demonstrating work in front of the class.
• Let the student present projects to the teacher instead of to the entire class.

Introducing new concepts/lessons

• Give extended time on tests and/or separate test-taking space to reduce performance anxiety.
• Allow use of word banks, cheat sheets, or fact cards for tests (for students who freeze or “go blank” during in-class tests).
• Set time limits for homework or reduce the amount of homework.
• Assure that work not completed in that time won’t count against the student.
• Provide class notes via email or a school portal for the student to preview.
• Give notice of upcoming tests (no “pop quizzes”).

[Not_a_Number]

Hey there. Good to see you on here again, although I'm sorry you're struggling. Hugs.

You should vent to us as much as you like. This board is so good for that. And there are people with all kinds of useful experience. And much empathy.  

This sounds like a really tough row to hoe. I'd also hesitate about adding more medications . . . although you should probably take that with a boulder of salt, since I tend to be medication-averse to begin with. Probably irrationally so. 

Personally, I'd homeschool, wait for her brain to grow up a bit, and prioritize finding what makes her feel better -- whether it's exercise, or audiobooks, or drawing . . . whatever it is, you'll be better placed to find it at home than at school, since it's likely to be very personal to her, and this is also likely to be WAY more important in her life than her academics. 

I'd also look for better therapists if at all possible. I wouldn't even care what it was called -- whether it was ERP or not. You want someone who knows how to get your child to listen and makes your child feel heard and understood. And I firmly believe that's mostly a function of the therapist and not of what the specifics of what they call what they're doing is. 

Edited September 8, 2023 by Not_a_Number

[Spryte]

My closest IRL friend struggled terribly with OCD — it was bad. She is on a cocktail of meds and it’s been manageable in the 20-ish years I’ve known her. She’s an amazing Mom, homeschooler, friend, volunteer. But there were hard times before we met. She had it as a kid, untreated, and remembers how awful it was. Big hugs to you all.

FWIW, my friend suggests gabapentin to go with the Prozac. It was a game changer for her.

[Terabith]

I don't have OCD, just depression/ anxiety/ ptsd, and I started meds as an adult, but gabapentin was life changing for me personally.  My youngest kid, who I have discussed her medication journey starting just after she turned five, added buspar when she was about 11 or 12, which helped, but again....not OCD.  I think it's pretty common for a cocktail to be required, but I agree I would hesitate a bit at seven.  Even if school is the right place for her to be, starting back after summer and in a new class with new classmates and teachers is HARD, even for neurotypical kids, so I'd try to wait six weeks or so before determining that this is not transition related.  

And it absolutely does suck for everyone involved, and I'm sorry, and you should feel completely free to vent.  It's so hard.  

[popmom]

You are welcome to vent here anytime. My youngest has OCD along with a long list of other dx's. Her OCD waxes and wanes in severity, and it is not interfering with much at the moment--mercifully. All of mine have struggled with serious mental illness at times. I can 100% relate to the exhaustion. I agree with whoever suggested having your own therapist. 

I want you to know that there can be light at the end of the tunnel. You may not be there yet, but it does get better. My two who were in the most danger are doing really well now. 

You are definitely not alone. It is hard, and it can be very, very lonely as a mom. I am glad you are here.

Edited September 9, 2023 by popmom

[Melissa in Australia]

Huge hugs 

I hear you

I too have been mentally exhausted for a while, that is one of the reasons my boys are in specialist school 3 days a week. I just needed the mental break. 

[Ottakee]

4 hours ago, Melissa in Australia said:

Huge hugs 

I hear you

I too have been mentally exhausted for a while, that is one of the reasons my boys are in specialist school 3 days a week. I just needed the mental break. 

The mental exhaustion is so real.

[Lecka]

I do think it’s important to consider the consequences of not medicating, too.

 

This can be greater mental distress.

 

This can be more time that the child is not participating in regular childhood activities, and losing opportunities for development.  
 

 

It’s not an easy decision, but I think it’s important to keep in mind there are drawbacks to not medicating, too.  It depends on the situation if a child is still having age-appropriate activities, participation, and development, or if they are just not able to participate.  Or if it’s in the middle, some things they can do, or it’s back and forth.  
 

 

But for op the academics are going well, and that’s awesome.  But there’s a lot more to child development and if she’s missing out on childhood experiences I think it’s worth considering that maybe she could be doing better.  It’s definitely the hope.  

 

Edit:  I think sometimes too, things are hard and there are problems — but things are working.  Other times things aren’t working.  It is hard to build a foundation to move forward from, if things aren’t working.  It can just be a lot of spinning wheels. 

Edited September 9, 2023 by Lecka

[Lecka]

It’s also very easy to get into — oh, right now she’s little.  But very quickly she will get older and then people say “why didn’t you do more when she was younger?”  
 

She is also developing her identity and is this going to be part of her identity?

 

Is she building negative associations now, instead of neutral or positive associations?  If she’s building negative associations and having negative experiences, that will stay with her.  
 

If she’s building neutral or positive associations, that will stay with her.  
 

It does matter.  
 

This is a time she would ideally be setting a strong foundation, and if she’s not, she won’t have that as she gets older.  
 

If it’s — spinning wheels, things not actually going well, not doing things other kids are doing — that is really different from — it’s not the same as other kids and some things aren’t done or are done differently, but in the big picture a strong foundation is being laid and there are many positive associations and experiences, and an overall positive trend line within reason.  
 

It really does happen very quickly, though, that it changes from “watch and wait, give more time, see if things get better,” to “why didn’t you act sooner.”

 

 

[PeterPan]

On 9/8/2023 at 2:00 PM, mindinggaps said:

Abilify

Has been a miracle in our house. Pdocs are reluctant to use it because it can have pretty steep side effects. We started my ds on *half* the smallest dose and that was enough. More and he's still good but he looks glazed. 

Can they run some genetics to see if you can do anything more targeted? Zinc is directly linked to anxiety because it affects GABA. You can have a genetic zinc receptor defect, meaning you need more zinc. Such an easy, inexpensive way to address *part* of the cause of anxiety. Not a total solution, but part. To me we have to address all these facets. They make it sound like you can just med, med, med and have it get right, but you can't if there's an actual underlying deficit, kwim? I don't know, it's just something I think about. 

There's another easy to identify gene that is only really an issue I think if you're homozygous. The gene is NBPF3 and it's a defect in b6. You end up needing to take the active form, p5p. 

Things like this are not either/or but more like yes and yes and yes...

And if school is flaring it up, 504. But the start is bad for everyone, no matter their placement. I used to take my ds into autism schools a lot and the first couple weeks would be SO hard, with yelling and behaviors in students (just walking along hearing it). Give it a month and they work things out and everything is calm. But it seems like there could be the 504 needed and the extra chemistry support. 

[Mrs Tiggywinkle Again]

Lamictal and Prozac have changed my son’s life for the better.  Please don’t be afraid of meds.  If there are side effects that are intolerable, you discontinue and try something else.  But the bottom line is that you have a child with a mental illness that needs to be treated just as if she had a physical illness.  This is going to be lifelong for her, and the sooner you can help balance her brain chemistry, the better. If she was diabetic, you wouldn’t not try med combinations if a doctor suggested them. 

And yes. Get a 504.  

[chocolate-chip chooky]

@mindinggaps  

Just a few thoughts I thought I'd share in case they are helpful. Apologies if I've shared these before and I'm repeating myself.

For us, things that have helped somewhat:

- mental distraction in the moment. Have something really interesting to tell or show. Bonus points if it requires moving to a different room or location. This isn't easy, but I got in the habit, and it truly helped. It can snap the brain out of following that same beaten path.

- mental stimulation ongoing. My daughter's OCD has been at its worst when she isn't mentally stimulated enough in general. Her brain NEEDS constant high-level stimulation, and if it isn't busy, it goes back and back and back to those beaten paths. For us, this has mainly been maths, languages and musical instruments. 

- hands busy and brain busy at the same time. This seems to keep more parts of my daughter's brain busy and minimises drifting to that beaten path. Mastering crochet was really helpful.

Things I avoid: - saying to 'trust me' or that 'it's okay' and 'there's nothing to worry about'. One of the hardest things about OCD is never being completely sure that your obsession has been 'fixed' by your compulsion. And as the support person, I can't absolutely promise that the meat bought at shop x is definitely safe or the cutlery at y's house is clean. We all need to be accepting that life has these risks that we can't control.

Instead, I say to 'hand me the burden' or 'let this be my responsibility'. This takes that extra layer off the top. 

And something that is hard but real is that OCD doesn't seem to get fixed. It just gets managed, and it ebbs and flows with changing situations, such as stress, hormones, sleep etc. With time and maturity, my daughter can acknowledge and recognise this. This in itself is very helpful.

I understand your concern about medication changes or additions, but I think an open mind is helpful.

[mindinggaps]

Thank you everyone for all your support, comments and advice - it is extremely helpful and much appreciated.
 

On 9/8/2023 at 2:53 PM, Farrar said:

If you don't have a therapy relationship for yourself, consider getting one.

I have been seeing a therapist for the last few months and have found it to be very helpful. At times it feels very overwhelming and having this outlet has certainly allowed me to better work through things. Lately I have really been struggling with the reality that I am responsible for making key decisions about her care when I sometimes don't feel fully equipped to make informed choices. The psychiatrist we work with is excellent, but ultimately their job is to suggest alterations to medications as others have noted. At this point in the process it feels that some aspects are partially up to us to figure out. They will make suggestions but also emphasize that many pathways are possible.

I also feel great frustration and a tinge of guilt that after she initially responded so well to the Prozac, she's suffered a setback which I believe was at least in part due to her not being on the medication for a couple weeks. Ever since that episode, her OCD has never really been fully settled. At the time, I don't think I appreciated the impact of this nor was I fully aware or accepting of the fact that medication is likely to be a crucial part of her life for the foreseeable future.

We do have a psych check this week and I know the topic of an add-on medication will be brought up once again. I did quickly contact the psych office on Friday afternoon and was able to confirm that adding a small dose of Abilify is their preferred route right now. We will discuss at the upcoming appointment. At this point my preference is to wait for at least another few weeks to see if things settle before we make any further changes. Her OCD is not good right now, but I hold out hope that this is a temporary flare up due to change in routine which will settle with time and therapy. I am somewhat afraid of adding another medication so hastily.

@chocolate-chip chooky I really appreciate these anecdotes - I have done a lot of reading to try to better support her but am always learning and looking to improve.

[PeterPan]

3 hours ago, mindinggaps said:

am somewhat afraid of adding another medication so hastily.

I'm not meaning to be blunt, but maybe you need to treat your own anxiety? Abilify is not like an SSRI that takes a long time to show any improvement. It's astonishing, it's fast, and it doesn't have a crazy long half life. It's not an uptake inhibitor and it's not the same level of commitment as an SSRI. 

Let the docs treat your dd. The fact that she needed such high doses of the other med probably meant she actually needed a different tool. Abilify is not great for everyone, but when it works it's GENIUS. Seriously. You wouldn't believe the peace it has brought to our house. If you knew how good it can be for the right people, you'd be banging on the door of the pharmacy right now.

I'm not saying it can't have side effects and I get your concerns, but you already put her on a med that affects thyroid and has side effects. I'm giving my ds selenium along with it to get his thyroid back up. It affects it *slightly*. We keep the dose as super low as possible. They can do a liquid, they can compound it in tiny amounts. You have options. The psych says my ds is quite sensitive, which probably goes back to genetics of metabolism which they can test for. 

If you take it and hate it, you'll know and dump it. If you take it and like it, you can join the Thank You Jesus for Meds that Help Club. (or whomever you like to thank) It really is that great for some people. 

Edited September 11, 2023 by PeterPan

[PeterPan]

Another thought. My ds changes and his needs change and what works changes, especially as he grows. Your dd might have needed an additional med ANYWAY, even if you had not had that time off. She probably would have grown and needed a fresh mix. So it's getting stuck in the past to say it has to be a certain way and that what worked x # months ago should work now. She's growing and changing and you have to work with the PRESENT.

I would let them get the mix in the PRESENT that works and not get stuck on what worked in the PAST. 

[mindinggaps]

@PeterPan Thanks for sharing your thoughts. To be clear, we are definitely considering the concept of adding on another medication. However, this is being presented to us as an option to consider rather than a firm recommendation at this stage. I will certainly admit that I am more hesitant to medicate than others and perhaps there are drawbacks to this approach. But we do follow the guidance of doctors and implement adjustments as needed.

I do personally feel adding something else into the mix at her age is a significant decision. She is also in ERP therapy and we are trying to use that in addition to the meds because for OCD, medication is not a panacea. I know people like to use to analogy of diabetes, but mental health is less crystal clear because the treatments involve a lot of trial and error. Others certainly have way more experience and I am not an expert, but after a few months in the trenches I certainly feel it's not as straightforward as getting some antibiotics for an infection. The meds can have side effects, it can require tweaking and experimentation which frankly hasn't been easy on her.

So we're open to the Abilify, but cautious...

Edited September 11, 2023 by mindinggaps

[itsheresomewhere]

Something to keep in mind-  as the child grows and especially when hormones start to play, it can throw off things.  We would have months of it working perfectly and then a grow spurt or hormones would make it need to be adjusted.  This is one thing I think doctors don’t mention enough and for some don’t get that even at your child’s age really plays a part.  

[Ottakee]

17 minutes ago, itsheresomewhere said:

Something to keep in mind-  as the child grows and especially when hormones start to play, it can throw off things.  We would have months of it working perfectly and then a grow spurt or hormones would make it need to be adjusted.  This is one thing I think doctors don’t mention enough and for some don’t get that even at your child’s age really plays a part.  

Yes.  Once we made it through puberty and all the growth and hormonal changes, it was so much easier to get stability.  

[PeterPan]

1 hour ago, mindinggaps said:

t mental health is less crystal clear because the treatments involve a lot of trial and error.

The reason it involves trial and error is because they don't run genetics and look at facts. It's the barbarism of the system, not how it HAS to be. They know exactly what pathways a med works on and you can see in the genes whether that pathway has issue. Just because the system has this past that is voodoo "mental health", talk talk, doesn't mean there isn't actual chemistry involved and paths. The problem is it's *complex*. So if you read studies looking at genes for this or that diagnosis, it's stinking complex. I try not to get stuck too hard on labels (because if you hang around long enough with pdocs, your labels will change) and try to look at what is actually going on. 

So for instance with my ds he has an issue with a dopamine receptor gene and the Abilify modulates that. You can google and find studies where they look at the gene and the med, very concrete. It doesn't have to be as spaghetti on the wall as they make it. It's just not as linear as fast food medicine wants it to be.

[PeterPan]

45 minutes ago, itsheresomewhere said:

Something to keep in mind-  as the child grows and especially when hormones start to play, it can throw off things.  We would have months of it working perfectly and then a grow spurt or hormones would make it need to be adjusted.  This is one thing I think doctors don’t mention enough and for some don’t get that even at your child’s age really plays a part.  

Yup, my ds hit puberty and everything that had been working stopped. It was horrible, horrible, horrible. Completely astonishing in fact. I had been pre-warned by our behaviorist (when ds was little) that it was a common thing and to expect it, and it still blew my mind. We ended up baselining everything, going off EVERYTHING for many months, then starting all over. 

[PeterPan]

1 hour ago, mindinggaps said:

The meds can have side effects, it can require tweaking and experimentation which frankly hasn't been easy on her.

I think the reason it has gone well with my ds is one, working on interoception so he has some baseline awareness and self advocacy skills, and two because we tamped down part (the easy part) with supplements based on genetics. Then the med doses could be lower, resulting in less drama. So it's stuff to consider. Like I said, I've lived long enough watching psychs and meds to think that the straight meds, nothing else path is pretty rough for hard cases. You can do it, but it's rough. I like the treat what you can figure out that is obvious (thyroid, d, vitamin deficiencies, etc, direct observable, measurable stuff), then get the rest of the way with meds. And I like interoception because people tend to TALK at our kids rather than helping them feel for themselves.

[OH_Homeschooler]

Hello! My DD has BPD and I'm a single mom, so I know the burnout is real.

Something that helped me is a NAMI class I took last year. It was for family members of people with mental illness. They also offer support groups, which is really nice because it can be so hard to explain your struggle to people that don't understand what it's really like. Here's the website if you wanted to see what's available near you. There are also online groups but I preferred something in person. 

https://nami.org/Home

There are also groups for the people with mental illness. I can't really speak to those but it might be helpful for your DD. 

 

 

Edited September 11, 2023 by OH_Homeschooler

[dsmith]

Ds takes Prozac with a small dose of Abilify - 2mg every other day. He takes it for a tic disorder, mood regulation (he's dx'd ASD) and some slight OCD tendencies in the way of obsessive scary thoughts. This dose has been very beneficial without any of the side effects seen at higher doses. Not all doctors believe in the effectiveness of smaller doses, but thankfully our neurology group uses this approach often. For some context, ds is 24 and over 300 lbs. and that dose is very effective for him. He originally started with a different antipsychotic which worked at first, but eventually made him worse, and he's been on Abilify for over 15 years now. He can't imagine being without it - it's been amazingly helpful for him. He's had to increase the Prozac dose once in the last 15 years, from 10 mg to 20 mg. 

[PeterPan]

2 hours ago, dsmith said:

for over 15 years now.

Thank you for sharing this!! I haven't talked with anyone else using it this way and certainly not for that long, so it's wonderful to hear. 

 

Edited September 11, 2023 by PeterPan

[mindinggaps]

Hi all, I wanted to share a brief update for those who are interested or who may have any further advice or thoughts. We had a psych appointment this past week which confirmed what was fairly obvious to everyone - her OCD symptoms have worsened over the last month or so. We discussed various options and while she is still having some symptoms, things are not severe enough that immediate action is required. For context, her symptoms right now are are persistent fear of germs, some compulsive hand washing and frequent checking but she is performing well in school and managing okay with peers.

The psychiatrist did bring up adding on another medication and said that while it's not necessary it may help alleviate her symptoms. She mentioned there are many options, but if we did go down this route, her first recommendation would be Abilify. She said for severe OCD, SSRIs alone are sometimes not enough and it's certainly not unusual to require multiple medications. However, we also did discuss the drawbacks here and at least for now we are taking a bit of a wait and see approach - we'll stick with the Prozac, emphasize the ERP therapy and check back in soon. They did give us a script which could be filled if we want, but unless things deteriorate further, it's not mandatory. 
 

[Kassia]

Thank you for the update.  Thinking of you and dd and hope you all get some relief soon.  That must be so hard.

[KidsHappen]

On 9/8/2023 at 1:58 PM, Miss Tick said:

I'm familiar with Lamictal, but not with this use for it. Can you tell me what affect it has on mood and learning? I was told that it can cause rage in some cases, so I'm surprised to hear it can also have beneficial effects?

Lamictal is a mood stabiliser primarily used to treat Bipolar Disorder. It is known to work better on depressive symptoms than manic ones. Almost all mood stabilisers can have weird mood side effects but that is pretty rare. When dealing with mood issues you often have to try many different meds to find what works best for you. I have never heard of its use in treating OCD but I haven't taken that in a very long time. I did used to take it but it was not managing my mania well enough and it caused a rare side effect of intense sleepiness without the ability to actually fall asleep (I think this was the beginning of my intense insomnia).

[KidsHappen]

I also tried Abilify as an add on and I loved it. It was like a miracle pill. I felt great on it. Unfortunately, once I reached a certain dosage it caused a side effect that I can't remember the name of but it was like restless leg syndrome but all over my entire body so I had to stop taking it. I think if I had stayed below that dosage threshold I would have been ok but once the side effect started lowering the dose didn't help. So I would recommend it but I would start with the lowest dose possible and progress very slowly and only as needed. 

I originally sought treatment for bipolar but I also have OCD and ADD. I found that once we managed to bring the bipolar under control then everything else fell in line. At this point, I am basically taking one bipolar med plus I have anti-anxiety meds and sleep meds that I take as needed. If I had a real need to concentrate (as if I went back to college or something) I would probably have to add back my Adderall but I really don't see that happening. 

I am telling you this because it has been found that anxiety exacerbates OCD so it is possible that if your dd is able to lower her anxiety with a different med it may also have a positive effect on her OCD. I would also recommend that you start a journal of meds she takes and the effects that they have and if you have to stop taking them, why because that will help with decisions in the future.  

[ScoutTN]

I definitely recommend genetic testing to see ahead of time what meds would be a poor fit for your Dd. There is no reason to do trial and error with powerful meds when real data that can help docs prescribe well is available. 

[Terabith]

6 minutes ago, ScoutTN said:

I definitely recommend genetic testing to see ahead of time what meds would be a poor fit for your Dd. There is no reason to do trial and error with powerful meds when real data that can help docs prescribe well is available. 

I have had multiple psychiatrists say that the genetic testing results aren’t really any better at predicting responses to meds than chance.  

[wendyroo]

11 minutes ago, Terabith said:

I have had multiple psychiatrists say that the genetic testing results aren’t really any better at predicting responses to meds than chance.  

Our psychiatrists also felt it was mostly useless. We did do the testing on Elliot as a very last resort, but what the testing shows has had no logical relationship to the actual efficacy that we have seen with various meds.