Tuesday, August 24, 2010

An aching heart

My husband and I went to visit 'A' this evening in the hospital. She greeted us with a glassy-eyes, a beautiful smile and huge hug. It took all I had to hold the tears back. Because she is what they described to be equivalent to a "repeat offender", they have her in isolation from the others, making her sit at a desk, completing worksheets all day. No television, no significant human contact...just "busy work" and sleep. She begged us to take her home...promised to do better but we explained to her our fears and concerns with bringing her home without a plan or any real changes. My husband and I discussed our frustration and helplessness on the ride home even he was tempted to bring her home with us. Realistically, we know that we can't but who knows if we'll even get the help that we need.

When 'A' stepped away, my husband and I discussed the possible reasons why she was being treated like a criminal and even tried to rationalize things...thinking they were possibly trying to trigger an episode like those she has at home. Before we left, I spoke to a nurse and asked her to explain her isolation and she told me that this is how they do things when children are readmitted during a short period of time. So, my explanation was that 'A' did not want to even return to the hospital but was there because she has an illness and cannot control her emotions in certain situations and environments. I reminded her that her meds weren't even adjusted last time she was in the hospital and I asked why she is being punished. Her reponse was...'A's issues are behavioral. I had to walk away or they'd be admitting me for a psychotic episode.

Why is it that no one seems to understand a fucking thing? If the mental health "professionals" cant find it in the diagnostic manual, it's like it cannot or does not exist. They leave no room for gray areas and definitely no room for these illnesses/symptoms to ever be exclusive to the individual. Every damn book that I read on pediatric bipolar disorder describes how, for whatever reason, some kids have the ability to internalize their emotions, only to eventually unload at home or wherever or with whomever they find safe zones or safe people. So, here we are...once again, having to prove ourselves and educate the so called professionals.

I have a meeting with the social worker and psychiatrist tomorrow and I will come with videos to prove that she does have triggers and rage like the other kids in the hospital...everyday!

I made the mistake of talking to her father this morning...he still keeps getting at taking her off her meds and having her live with him. She might completely lose ground and never come back if I allow that.

I also did some research on similar disorders... Her recent symptoms look more like something called schizoaffective disorder.

My husband and I are determined to walk out of the meeting with a plan...something. My heart just aches.... 2 1/2 more weeks until her big appointment and it cannot come any
sooner!!!

Can anyone hear us!?!?!

Tonight, I whispered, "I love you" and kissed 'A' on her forehead before I left her, once again in the hospital. I'm sure I sound like a broken record but...I cannot begin to tell you how frustrated and helpless, I feel right now. This is 'A's sixth hospital stay in a year and a half period! We have to do or find something that works...

This past weekend has been more than hectic, with a very unstable child and preparing for my husband's retirement party. All week, 'A' has been struggling with stability and I believe, having episodes of psychosis. She started school last week, which has always been a trigger for her. Thankfully, she still maintains the ability to internalize her emotions until she gets home. All I can say is, at least there we have that. Because of a cancellation, she was able to get an appointment with her psychiatrist on the first day of school. 'A' became hypomanic in her office but did not lose complete control, like in the past. Her psych put her on, yet another med (this makes 4) because she STILL believes 'A' has ADHD but this one is, at least, a non-stimulant. It has proven to be absolutely uselsess in controlling her rapid-cycling or even slowing the mania. Why??? Because 'A' does not have ADHD....she has bipolar disorder with acute mania!!! ( I wish I had the time, brains, and money to go back to school for a degree in psychiatry.) In the last week, she has started to go through periods where she gets this glazed over look on her face, appears intoxicated, speaks incoherently, sometimes becomes paranoid, paces and appears to be speaking her own language. I even recorded the episodes and sent them to her doctor....the worthless doctor that has yet to respond to me after 4 days. I thought these new symptoms could be because of the new med, so I stopped giving it to her...sure wish I had a doctor to consult. RIDICULOUSLY FRUSTRATING!

We did have a nice break from the instability and chaos while 'A's step-sister came to spend the weekend with us for the party. I found that breaks from her routine and constant stimulation help to keep her from sinking into instability. Our special visitor and the party were great distractions but the party only lasted a day, our visitor had to leave, and realistically, it's impossible for me to provide constant stimulation and distractions. Even with the stimulation and distractions, she struggled with maintaining stability.

Things got pretty bad today...and I...WE made the decision that it couldn't go on any longer. So, I made my call to the hospital of choice to see if there were beds available, put my protesting (and psychotic?) daughter in the car as she cried and spoke "her language" until she passed out and made the drive to the hospital. When she arrived they spoke with her, looked into her eyes and noticed her blank affect and fixed pupils, and didn't even bother with getting the psych unit to evaluate her before they admitted her. As I filled out the paperwork in the unit, the nurse reminded me of what a great patient "A" is while there and how he believed this was all "behavioral". I reminded him, as I've had to remind many others, (including her psychiatrist) that this is NOT 'A' and not how she wants to be or feel...and what a loving, bright and caring child she is. Residential and respite were very briefly mentioned and my heart sunk... As it stands now, she's unmanageable and I'm not sure if our home can function with the chaos....but I'm her mom and she's my baby...

Monday, August 16, 2010

Something I came across

As I gather information to take to the upcoming "big" appointment. I read over a psych eval done about a year ago and here are some of the questions and 'A's answers on a behavioral assessment.

Sometimes I want to hurt myself. (TRUE)
Other kids hate to be with me. (Often)
I hate school. (Sometimes)
I feel sad. (Often)
I feel like my life is getting worse and worse (Sometimes)
I hear voices in my head that no one else can hear (Often)
Other people make fun of me. (Sometimes)

This breaks my heart...

A new school year...

Tomorrow starts a new school year and 'A' will be a fifth grader. Unfortunately, she'll already be missing part of her school day so that she can go see her psychiatrist. I can't voice my frustration enough with her psychiatrist and her office. The office was aware that 'A' was recently in the hospital and when I asked for an emergency appointment, they gave me the end of the week. Luckily, someone canceled and we were able to get in.

Since her discharge from the hospital, 'A' has been cycling all day, everyday. I was so hopeful that she was better and that this could possibly be a relatively stable, peaceful and happy school year. One moment she's manipulating, lying, screaming, teasing or aggravating her sister, telling us that she going to poison us, telling us she wants to die, trying to get us to physically fight her and the next moment... she's fine--happy, being a great sister, being helpful, telling us how she's feeling better and going to do better in the future. Then there's a trigger (from wanting something she can't have to her sister crying)or sometimes none and that negative behavior starts up again. I can't express how ugly and wicked this disorder is...it turns her into a creature that feeds off of cruelty and chaos and does anything and everything to suck you in. Surprisingly, my father is doing his best to be helpful but even he has no clue. He told me to just "talk to her, get her to do thing with me, go for a walk,"...etc...etc. Well, he quickly learned after spending a few hours with us, that when she is in that unstable mode, there is nothing that you can say or do that will distract her until she/the disorder has cycled through. She has also been ravenously hungry...this is partially because of the medicine but also an indicator of increased instability. In fact, her psychiatrist advised me to give her a certain medicine that she used to take which basically slows her down or stops the mania, only when she is increasingly unstable. I can count on one hand the amount of times that I gave it to her but I did give her some a couple days ago and it did absolutely nothing....for me, another indicator that she is quickly spiraling into extreme instability and/or cycling in and out of psychosis.

2 days ago, I just had to leave the house and sit on the porch because it was too much for me. I sat on the front steps with tears pouring down my face...feeling once again, helpless. I called and left a message for her psychiatrist who got back to me very quickly (normally it's about 24+hrs later) and felt even more helpless after getting off the phone with her. She claimed that the hospital said that they were going to increase her meds and the hospital told me that she advised them not to. So...who to believe? But wait.. who the fuck cares? I have a child that keeps cycling into psychosis and all the psych told me to do was either give her benadryl or increase one of her meds to basically sedate her. I asked the psych if I should continue basically sedating her all day and her response was....it's behavioral because she is always fine in the hospital. It took all I had not to totally go off but I reminded her that this is NOT my daughter nor the way she wants to act. I'm not a perfect parent but there is consistency yet flexibility, rules and consequences in my home when she is stable and even when she is not. I have read in just about every book that for whatever reasons, children with bp can often "hold it together" in certain situations (often school) for short period of time and then unload at home or with those closest to them. Some say there is actually a chemical interaction/response/exchange when a child is the company of their mother. There is so much research needed... I even called the hospital because they told me to call back with any other issues....big mistake. The nurse spewed the whole "behavioral" word at me too but told me to bring her in if I wanted and she could be reevaluated. I had to choose between semi-sedation at home or back in the hospital where she could easily come home even more unstable. So, I gave her an extra half of a pill and it totally knocked her out. She couldn't keep her head up, or keep her eyes open...the evening was uneventful, only because she slept most of it away. I feel so guilty and angry that tears well up in my eyes everytime I think about how unfair it is that she's been tortured for so long and robbed of a happy childhood full of playing outside, friends, sleepovers, parties and just "normal kid stuff"....probably things most parents take for granted.

Today, I finally made the decision to take her to an institute that specializes in Pediatric Mood disorders. The head of the institute is the author of "What works for bipolar kids" and rated as one of the U.S. top psychiatrists by two different sources. I've heard from many that she "gets it" and has brought stability to many families. It's very expensive (they don't accept insurance) and I have to make the drive to Chicago but hey, we as parents, do what we have to do and if it means that 'A' will be happy, have less-anxiety, decreased depression and mood swings, and live a "normal" 10yr old life...12hrs of travelling every few months is nothing!

Sunday, August 15, 2010

Please God, not again...

I type this as a I take a break from rummaging through my library of books on bipolar disorder in children. Once again, I'm immersing myself in these many chapters...hoping that there's something else...praying that perhaps I overlooked something that could possibly turn her around and help this poor suffering girl and our family.

'A' just got back from her 3 night stay at the hospital and the 2 days that she has been home have been more than challenging. She's stayed out of the hospital for over a year and I don't think I even battled with making the decision of having her admitted during that whole time. Don't get me wrong, times were very rocky and tumultuous but nothing like what we experienced earlier this week. After spending a week with her father, she came home agitated which quickly led to anger and then quickly led to depression. This was clearly depression where before she was often in a mixed-state and it was difficult to identify the depressive moments through the mania. All she thought about was how angry she was with her father, how much she hated herself and how much she wished to die. Everything that she came in contact with, she thought of ways to use it to end her life. She would jerk her body back and forth, almost trying to jolt herself back into reality and into feeling like herself and behavior that was once outward (destructive to everything and everyone around her) became inward. Then suddenly, she'd snap out of it and behave "normal" only to return back into that helpless world. We thought that she would sleep it off and be better the next day like she normally does a day or so after visiting with her father but this time, her first words after waking up were "I hate my father, I hate myself, I want to die." She kept asking for help and asking to talk to someone but we're in between therapists and finding a decent one is more than a challenge. You can't ignore this behavior so I decided it was time to take her in. I don't think that she was home 24hrs before I took her into the hospital. My father and step-mother did not want me to take her in...my father asked that I take her to his house but I told him that was a temporary fix. She might feel better for a period, hold it together as best as she could but come home and unload, and perhaps even worse than before.

Intake was about 5hrs and there were times that she got aggitated and projecting her frustration on me and I spent a lot of time outside her room, looking in on her because of this. Finally, she was taken up to the unit and we said our goodbyes. Before I left, she asked that I not tell her father because, "he'll be so mad at me". I had to explain once again that I had full custody of her and under no circumstances should they talk to him before me or make any decisions for her. (last time he told them that nothing was wrong with her and they were ready to release her) It was so surreal going through that once again....having to leave my baby in the hospital for the 5th time in her short 10yrs of life.

I didn't even call 'A's' father...just left him an email because I knew that if I called...it would be the same ole shit...I'd be verbally attacked, etc. etc. He would tell me what a "perfect little girl she was and what a great time they had and then say she got really anxious before coming home". So, basically blame me for her behavior. I did as I was supposed to...I told him. Sure enough...his response was as I said.


I made arrangements for my step-mother to go see her and I spoke with 'A' on the phone. I was on the phone and in the office of her previous therapist, trying to get it started again. Her therapy wasn't covered by insurance and based on a sliding fee scale, we were expected to pay $1100/month. I filed appeals with no success but since my husband retired in the last couple weeks, our income has dropped, making the fee more reasonable. The only trouble with restarting therapy was, my ex-husband appears to still be in denial of her diagnosis and treatment because he hadn't paid them in months. They wanted the full ammount before she came back. I can go on for years about how grossly flawed our court system is, to give clueless and irresponsible parents all the rights they desire. They don't have to pay a dime to support the children and the brunt of the support is placed upon the primary caregiver. Let's think about this...I spent a year in court battling my ex-husband who owes thousands of dollars in support for our child's care, spent thousands of dollars for an idiotic guadian ad litem, spent thousands of dollars on an attorney, wasted time that I could have been devoted to my family and spent time away from my job. I'm even getting billed for court fees on a custody case that i didn't even file!!! So unfair and this asshole continues to not support his child while they give him as much visitation and even more than he desires. Visitation that I warned the court could be detrimental to my daughter's stability. They didn't care because it's all about "parental rights"...not about the children and in this case, a special needs child. You pretty much have to beat the shit out of a child for "parental rights" to be revoked and even then that's only temporary. I have family members and friends whose "baby daddy's" haven't paid shit for years, and they still have rights to come and go as they please. Excuse my language but That's really FUCKED UP! (Ok...I've stepped off of my soapbox)

'A'She shared with me that she was doing a lot of talking and crying...something that she wasn't able to do at her previous stays. 'A' also called my mother and asked her to be there when her father visited so I picked my mother up on my way to evening visiting hours. She was still very down and tearful, and said she felt "like she was in jail" as tears poured down her facel. Hearing her say that just broke my heart and my mothers too. We cried and I held her.

The next day, we met with the hospital social worker and the psychiatrist. We told the social worker our concerns, Aminah spoke quite a bit and shared with us her fears regarding her father. She told us that he scares her and manipulates her into thinking that he's having a heart attack when she begins to melt down. The social worker shared her concerns with boundaries but recommended that 'A' take a break from the lengthy and frequent visits with her father until 'A' learns better coping skills. She also mentioned that she would suggest therapy for him. Sounded like a great plan until she met with him and I'm sure he fed her the same shit and obviously she bought it and told me that she "didn't want to take sides". My response was that it's not about taking sides...it's about advocating for and acting in the best interest of 'A'. Like normal, 'A' was very agreeable and pleasant while in the hospital. So, they released her without a med adjustment and just recommended continued therapy. I went to get her from the hospital, thinking this would soon be behind us and she'd be able to start a new school year relatively stable.


To be Continued....