Tuesday, November 18, 2014

There is no silver lining in childhood bipolar disorder

Sympathy is taking away from someone's suffering, trying to put a silver lining in it. Whereas empathy is connecting to the persons suffering which forms a comforting bond.  There is unique video that describes this http://youtu.be/1Evwgu369Jw. In effort to show more empathy with you, my readers I want you to know my story

I can’t even really describe to you when I noticed that something wasn’t quite right with Ally.  But I do know that it was at a very young age right around 10 months she still wasn’t meeting all the milestones you would typically see. She had a really hard time being separated from me, almost to the point of hysterical anxiety.  She didn’t really crawl but would butt drag across the floor. Ali would have meltdowns if she wore certain types of clothes and always tended to run hot even in the dead of winter. By time she was 18 months she still wasn’t talking. Early intervention didn’t really help, they just said she was delayed by 6 months and needed speech therapy. But a mother knows and my heart sank because no one would address my other worries.

By the time she was 3 she started showing what I believe to be typical signs of bipolar disorder.  She would have rages if we said no to her. If we set limits she would bite me or hit me.  She would have wonky sleep cycles. Some days she would go to bed at 6pm and sleep til 11am. Other times she would stay up til 11 pm and wake up at 4am.  But the scariest mom moment was when I would catch her doing some scary things that I thought were a call for help but the Dr just thought it was kid stuff.  She would frequently put plastic bags over her head. Or I would catch her with belts pulled so tightly that I wondered how she was still able to breathe. This frankly scared the shit out of me but the Doctors were unfazed.

Once she started preschool the child psychologist she did she that Ally had behavioral issues. She saw that Ally was a bully. That she would use her powers of manipulation to get what she wanted from the other kids and from the regular teachers. This is when they moved her to special education. Meanwhile I’m still here saying she needs mental help and services and I am still met with she is just developmentally delayed and at the most she may have ADHD.

Even in the special education room she continues to struggle and to have issues. The meltdowns get worse. I get phone calls everyday about her behaviors and her meltdowns.  She becomes a flight risks and runs out of the room when it becomes overwhelming. I can’t even describe to you the feeling that you get in the pit of your stomach each time the phone rings. The churning and burning, the sinking feeling that your tethering on a cliff and there is no one there to throw you a life line.  To be talking to anyone that will listen and then no one does anything to help. It quite exhausting and demoralizing. I spent many nights crying, wondering and hoping things would get better. But they never did they only got worse.

Being a military family and moving every 3 years brings about an extreme about of stress. And that stress of an overseas move broke my daughter. Second grade is now known as the year of hell. Where shit really did hit the fan. She produced nuclear meltdowns, multiple tantrums where she threw chairs at students and cussed out teachers. She even left school and made it half way home before they caught up to her. They had the nerve to tell me it was still ADHD and we need to try medications. Even though I kept saying NO it’s something else.

Needless to say I gave it a shot. We tried our first ADHD medication and the DR suggested a non-stimulant route, we made it 2 weeks before I got the call that Ally was with the principle and I needed to pick her up immediately. She was out of control; bull in a china shop mad and nothing would calm her down. Her psychiatrist had an emergency consult and say we should try a stimulant. Again even though I knew that wasn’t what she needed, I agree. I placed my trust in him blindly and for that I am sorry.  Ali got worse. Her mood disorder came out full swing.

That’s what sent her into her first bipolar spiral. She became the irritable, angry emotional mess. She started not sleeping. Screaming that she hated school and me, that I was the worse mother ever.  She became the tasmanian devil and she broke whatever she wanted. She ruled our family life. We became hermits and never went anywhere because we never knew how Ally would react. Finally after living in hell the Doctor saw the light and diagnosed her with Mood Disorder NOS. She was started on Abilify and slowly started to get better.  Ally was never easy but she was manageable.

Then 3rd grade started and school got to be hard again. She started growing. We had to keep upping her dose and soon Abilify stopped working. And her second bipolar spiral appeared. Ali was back to not sleeping, waking up at 4am and roaming the house. She would become hyper focused on certain things like birds and coconuts and wouldn’t want to do anything else unless it revolved around this.  It got to the point where she would run out at 4am to go hunting for coconuts or trying to trap birds. God forbid we said no, instant rage. But with that came a new scary phenomenon wanting to DIE.  The Dr didn’t seem overly concerned said it was probably medication related and switched her to Risperdal. Even with the new medication it seemed to no impact on her at all.

In fact she got worse. Her moods became so unstable that she would cycle multiple times a day. Super tired and irritable when she woke up, happy for breakfast, then on the walk to school back to angry and already taking about how she was going to throw fits so she wouldn’t have to work. She started hitting her brother. Calling him stupid. More talks about how she wanted to Die and even contemplated jumping off a parking structure.

That was my breaking point I had enough. I told her Dr that if he didn’t do something my daughter was going to have to be hospitalized. I just couldn’t do it anymore. We weren’t sleeping or eating. Ally wasn’t living, she was just existing. I wanted her to get better. I wanted a mood stabilizer for her, so she could be happy instead of this emotional monster.  And he finally said YES. She was started on Lithium about 3 weeks ago.

Being on Lithium as a young child isn’t always the right choice for everyone but for us was the best choice.  Ally wasn’t able to comprehend why she needed to get her blood levels checked every week. But she is able to say that she is feeling better. I see glimpse of the old her ever now and then. I only hope as her levels stabilize so will her rages, anger and irritability. Her moods for the most part aren’t cycling as drastically as they were. And I finally feel like I can take a breath. This last 3 months have been so difficult that I admit social retreat. I am no longer the happy go lucky free spirited mother I used to be. I am the one on guard that battles back the dragon of the disease that threatens to control my daughter and our lives.

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