We're suddenly in the midst of some big mood swings, seeing laughter one day and tears all day on the next. We had cut out all Zyprexa and titrated up to 3 mg of Risperdal. Lily is also having panic attacks multiple times a day. I feel so bad for her, and once again so powerless to reach her. When she's in this space, her health fears take over as well. So - we're off to our family doctor tomorrow to reassure Lily that her heart is healthy and the scary symptoms she's having are only temporary and will be manageable.
I had an interesting conversation with DocD last week about Lily's transition to the new care team. She shared what she most wants us to be able to share with the new psychiatrist, including tracking the psychosis with anxiety, indicating that the hallucinations may have been a function of the mood disorder as opposed to schizoaffective disorder. I dearly, dearly hope so.
I asked her for her thoughts on Lily's continued struggle with auditory sensitivity, and she said she sees that as an adhd symptom, not being able to filter out background noises. I finally understand why she prescribed the Intuniv! That sounds bad, and it's not like we didn't discuss the benefits of Intuniv before starting Lily on it, but her explanation at the time was that it would help with the anxiety.
I'm reminded again that this psychiatrist has been more in tune with what's going on with Lily than I realized, but her communication with me, even when I asked what she thought, was very limited. I think she was being cautious, wanting to see what would happen with Lily over a longer period of time. The difficulty was that I was living with the fear and stress that came with trying manage Lily's illness while handling a life beyond the illness. Work, bills, other kids, housework . . . And nothing can compete with handling someone in full psychosis, so most of the regular day to day stuff went by the wayside.
So, my lesson about this is, treatment for an individual with mental illness has to include the family. My ability to help my daughter has absolutely been influenced by the other needs and stresses in my world. I need to be calm, strong, and not distracted, in order to take the very best care of Lily. Family support is one piece that has been missing this long year.
Finally, I'm worried that these mood swings will interfere with the start of the school year, for both Lily and I. I'm trying to get back in to finish my degree this year. And I so want some normalcy for Lily. I sound like a broken record. The truth is that I want her to feel stronger, more capable, proud of herself. She's an awesome, beautiful, talented girl. I want her to be able to feel that. And yes, I want to be able to move forward for my own benefit as well.
An option for Lily, if things destabilize further, would be to add some Zyprexa back in during this transition. Lily is opposed to that, but I swear if she shows signs of mania, I'll force the issue before I'll leave her at risk to be hospitalized again.
Lila, it sounds like you have a lot on your plate! It also sounds like you're doing all you can to help Lily. I relate to her health fears. My daughter used to struggle with those all the time, and as you say, it's very hard to feel powerless to help them. And you are so right about family support being an important part of treating this illness. I hope you get it, or more of it, soon!
ReplyDeleteHoney, you are so amazing! I feel exactly the same as you said here, "I need to be calm, strong, and not distracted, in order to take the very best care of Lily. Family support is one piece that has been missing this long year."
ReplyDeleteI too am returning to school in Sept. So now I need more than ever, the support of family and assistance from community services for my kiddos! If I think about all that I need to do as a whole I will go nutty, but I am taking each day a moment at a time and each task a bite at a time. Services, education, therapy, medication, and all the things for the family, let alone moving and starting new schools.... I am with you my dear!