ADHD

Frustrated with the brokenness

/ Outrunning my demons / 7 Comments

As a parent of a teenager with significant mental health challenges, I am extremely frustrated right now. As you may remember, last week I mentioned that my daughter just got home after her fifth inpatient stay at the psych ward. She was given 5 different psychiatric medications and was sent on her way. This week she had a follow up appointment with her regular doctor who refused to fill some of her medications. I am so beyond frustrated right now.

Her doctor said she wouldn’t fill her ADHD medication because she wanted proof my daughter has ADHD before prescribing. I don’t really have a problem with that although she was diagnosed with ADHD at residential and the medicine they gave her for it really helped her. No one is on the same page or takes the time to get to know her. I am all for doing a psych eval for diagnostic purposes. So far she has been ‘diagnosed’ with 9 different mental health conditions by multiple providers. I know she doesn’t have all the things she has been ‘diagnosed’ with. How hard is it to actually test her so there is no question what she is struggling with so she can have the proper treatment??

She also couldn’t get her prescription for a mood stabilizer. There have been three medications I felt helped my daughter, one is the ADHD medicine and the other is the mood stabilizer they prescribed in the hospital that the doctor refuses to fill. There is one more mood stabilizer that helped which causes weight gain. My daughter also is a binge eater and is considered obese, so although it did help I don’t want her on it.

So we are back to square one. She is not on any of the medications that have historically worked for her. Everyone keeps yanking around her meds. No one can agree on what needs treating and no one is doing the testing that would point to treatment options. Arabella did have a psychiatrist for 5 months. I really liked him and thought he was spot on. But then he dropped the bomb on me by saying he thought she has borderline and schizoaffective with bipolar II. Then he abruptly retired and she has not been able to see an outpatient psychiatrist since. She dropped her regular doctor and psychiatric nurse after she thought I turned them against her.

Now Arabella is splitting with her therapist and her therapist does not want to see her anymore. She really liked this therapist until she didn’t anymore. This was her sixth therapist not counting the inpatient, outpatient, and residential therapists. I want to get involved in her care, but last time it didn’t work out well for either one of us.

I think the system is broken. Part of it is my daughter’s fault for doctor and therapist hopping, although it is not unusual for someone with her mental health struggles. But it is so hard to find someone who will take the time to listen and manage her care. I told her she needs to be forceful about getting the help and medications she needs because her life depends on it.

How hard can it be? It isn’t like this for a medical condition. Oh, you have cancer. Nah, we don’t really need to know where or how bad it is. Here just take these pills and come back in 6 months. Oh, then you probably don’t have cancer, you probably have high blood pressure. Just try these pills instead. We aren’t going to give you the pills that worked in the past because we don’t think you are feeling sick but we are not going to test you. What is your billing address again? Next!

Arabella has an appointment to see a new psychiatrist in July. By then it will be a year and a half since her previous doctor retired. I never would have guessed how difficult it is to get good mental health treatment when you need it. I feel really stuck now in what I can do to help her. The best I can do right now is to encourage her to advocate for her own care. I’m afraid if I help her again and she goes back to hating me again, she will drop her whole care team like she did before.

But most of all, I feel frustrated with the broken system. You can’t help people if you only spent 10 minutes with them before moving on to the next patient.

Residential care

/ Outrunning my demons / Leave a comment

The first couple of weeks at residential were really rough. I was afraid that Arabella was going to get kicked out of the program. They told us while she was on the waiting list if she did any self-harm, such as banging her head against the wall like she did at her second inpatient stay, they would release her. She knew that because she was part of that conversation. She hated it there at first. She didn’t have any friends. They purposefully kept her alone to increase her tolerance in a safe environment.

We received nightly calls from her which were not always good. She begged us to send her expensive gifts overlooking the cost of treatment. She bragged about her arguments with staff and how she broke the rules. They had a hard time waking her up in the morning like we did. It wasn’t going well because she didn’t want to be there. She argued with us and hung up on us on multiple occasions. I was always waiting for a call that we should come pick her up and there was nothing they could do for her.

The first call from the therapist was rough because she said that Arabella made allegations of abuse against us which they had to report to social services. Nice! What were they going to do anyway? Take her away? I jokingly said to my husband that maybe then the county would pay for her residential treatment. But nothing ever happened.

Arabella caught on fast, but she couldn’t focus. She was easily distracted which lead to a diagnosis of ADHD. She improved greatly in the program after she was treated for this. I felt like this was a turning point in her treatment. She wanted to be there after that and wanted to get better. She could finally focus on studying and new hobbies.

Some other strange things happened while she was there. Arabella went into a dissociative state and freaked out scaring other patients. She didn’t know who she was or where she was. In this dissociative state, Arabella ate plastic which prompted more testing for pica. Dissociation can be a symptom of borderline. After this she had every single diagnostic characteristic of borderline. I wondered if this had anything to do with her eating nonfood items before. I was completely puzzled.

Before this I did not know she experienced dissociative episodes. She admitted to dissociating in the shower. She also said that she had episodes in her room where she looked down at herself and thought that she was a very bad person that didn’t deserve to live or a very good person. I found it very hard to understand and didn’t even know it was possible or likely without experiencing major trauma.

After the treatment for ADHD and after her dissociative episode ended, there was a time of tremendous growth. She started working on learning and applying skills. I guess what I’m trying to say is that we were very fearful at first about whether or not this treatment was going to work. We had a lot invested in it and not just financially. I think our fear in early treatment was normal, we just didn’t know what to expect.

I think the residential DBT program was a lifesaver. It gave her (and us) more tools to work on some of her mental health issues she was struggling with. But we were also worried about how things were going to be when she got home. Would the skills carry over? Would she be able to live independently or would she need lifetime care? Again, we just didn’t know what to expect in recovery.

Waiting in the uncertainty

/ Outrunning my demons / Leave a comment

One day Arabella handed me a baggie full of pills. Inside was a month’s supply of sleeping pills. I didn’t understand. How did this happen when I watched her take her medication every morning and every night? I couldn’t imagine it would be that easy to stockpile pills while under supervision.

She gave me the pills because she said she was no longer planning on using them to kill herself. She said she was surprised that I never found them after outpatient said I should search her room. I also remember the late night text from Jordan’s mom saying that she had pills and was planning on using them.

Arabella said that on some nights she wouldn’t take her sleeping pills but instead would drink energy drinks so she could stay up all night. That is what she did to finish high school. I don’t understand why she would even want to do that. At the time she seemed rather manic and didn’t feel the need for sleep. But she didn’t feel like killing herself either. I would almost prefer mania to suicidal depression.

But was she really bipolar then? She told the doctor she couldn’t sleep at night even with the sleeping pills. But she didn’t tell him that she wasn’t always taking them.

I’m glad she handed over the sleeping pills. I finally felt some peace after hearing that my daughter was going to OD on pills but never being able to find anything.

The hard part was that her psychiatrist thought she could be bipolar but said he was retiring and just left us. He never put her on medication that would manage bipolar. At residential, they didn’t think she was bipolar. At home right now, she seems manic.

Over the past year, my daughter has had 6 different possible psychiatric diagnoses. It seems to me that the experts don’t agree. She still needs my help to manage her medications because she is not taking them properly. I still don’t have the answers that I need. I’m not sure what the future holds as far as her care goes. She is having a hard time finding a job because it is obvious that she has some serious mental health issues if you have a conversation with her. I don’t know where to turn.

But as for now, she gave me the pills back. She seems manic which presents itself with other safety concerns. At least she isn’t suicidal at the moment.

But now what? She wants me to butt out because she is an adult now. I can’t in good conscience walk away. I really would like her to have psychological testing for a firm diagnosis. The jury is still out whether or not she is going to be able to live independently and take care of herself someday. The uncertainty and lack of control over the situation is hard to deal with. I guess I’ll just have to wait and see and hope she doesn’t do something to destroy herself in the meantime.

She graduated!

/ Outrunning my demons / 1 Comment

I’m really grateful my daughter earned her high school diploma. There was a time when I might have taken it for granted that she was graduating. I had her ideal future all planned out after all. Her high school graduation was going to be her first but not last. You see, she is a very smart girl. She was an honor student. Surprisingly she still graduated with honors.

Things went downhill with the pandemic. Maybe we would’ve been able to manage her mental health issues better if COVID never happened. I guess we will never know.

Online schooling is not for the smart but unorganized extrovert. It was hard for her to stay focused. Even when school went back to in person she had problems. She missed so much school because of her hospitalizations that she had to go back to online school again. It was December right before Christmas break when she finally got set up to do schooling online. She didn’t want to start school when every one else was on break so she didn’t. Right after the new year started, she went to outpatient full-time. They didn’t give the kids the opportunity to do schoolwork at the time because it was a privacy violation.

That left Arabella with weekends and evening to finish school and that wasn’t going to happen. The outpatient program cut Arabella back to part-time so she could work on school. She was months away from graduation and hadn’t even started yet. I was afraid she wouldn’t graduate. Hopefully she could get done before she made the waiting list for residential.

Then one day she decided to finish her online schooling. She literally worked on it all day and stayed up all night to complete classes. I did want her to finish but didn’t think her obsession was healthy. I even told her several times that it was okay to take breaks. At that pace, she finished it in no time. It was one less worry I had about her future.

Later we found out in residential that she has ADHD. She was finally able to focus once it was treated. She also got into some new hobbies such as painting. For a long time she felt like she wasn’t good at anything because of her inability to concentrate. Plus both of her siblings have a raw talent for music that she doesn’t have. She didn’t feel like she had a place or purpose compared to them.

I felt terribly sad that a lot of the issues she was having with school and concentrating were fixable but we just didn’t know. Honestly, I also thought before that ADHD was kind of a cop out diagnosis. Sometimes I thought it was just a matter of being more disciplined. But now after I’ve seen how focused she is, I think I was wrong.

Now I also see that I missed the same symptoms in my son. For boys the doctor said it presented differently. The boys would rather be defiant saying they hate school instead of feeling like they are stupid. I wish I would’ve known some things sooner. Maybe I still could’ve changed things.

I have the same thoughts about Arabella going to residential and learning DBT. I wish I had known what I know now sooner. But you can only do the best you can with what you have. I have to let that go.

I am excited that Arabella graduated. She had a lot of obstacles with her mental health over the last year and a half. Paul and I are planning a trip to Maine with her this fall to celebrate. Hopefully it will make up for some of the things she lost along the way. She was supposed to be a foreign exchange student this year. That didn’t happen.

She is a high school graduate now. It is the first step into her future, a future she decides. It may not be what I choose, but it is a step in the right direction. I am happy for that.