Friday, August 26, 2011

Fall Fabulous Fall

We are busily interacting with a new care team, and getting a very different perspective.  The new team, consisting of a therapist as well as TBS therapists,  a psychologist and soon, a new psychiatrist, are offering an amazing level of support.  Our journey will be an uphill battle, but I'm holding out for greatly improved function for Lily and more balance for our family.

One of the keys to this new approach will be the guidance I receive so that I can more effectively help Lily.  Holding appropriate boundaries, helping her to see that she isn't powerless in her disorder, but that she is strong enough to effect a different outcome.  I've been working on some of these boundaries for awhile, and I have to acknowledge that it's hard for Lily when I change the rules. Still, I'll continue, and I'll keep explaining to Lily as we go along why I'm making the decisions that I am.  It's not a lack of love that influences my decision to enforce a boundary, rather it's the strength of my love that allows me to make a change that's hard, that makes Lily unhappy.

In the end I simply want our whole family to function in a healthy, more free way.  A better environment will help heal Lily's relationships with the family and will lower my stress level.

Towards that end, I returned to school this week and am still working on getting Lily's school placement organized.  For me, it felt amazing to get back to the university.  The drive over was beautiful, focusing on fine tuning my schedule and contemplating the material I'll be studying was great.  I even have a social dance class for my PE requirement.  I was intimidated, but it seems like it'll be low key and fun.  I love dance, and I have no illusions about being a competitive ballroom dancer, but I love the movement, rhythm and joy of a waltz or the hustle.  Two sides of a coin.

I'm going to consider this a move towards getting our lives back.  I know there will be challenges, but if I've learned anything this past year, it's that we don't want to stay on the path we were walking, and I refuse to believe we can't do anything to make it better.  Yes, we can.

Saturday, August 6, 2011

Wonder of Wonders

I was concerned about Lily's cycling early in the week - but things are markedly better.  Whew!  We haven't had to add in the Zyprexa, and I'm hoping that her current med cocktail is therapeutically building up in her system.  Because we went up to 50 mg of Lamictal, Lily is a little rashy.  We'll treat that with Benadryl and watch to see if she adjusts and that improves.  Fingers crossed here.

More good news is that we are scheduled to have therapeutic behavior services come in next week, and we are being offered family partnership services as well.  I may get some respite care, which would be such a welcome blessing.

More evidence of Lily's continued improvement:  Lily has been talking to her brother and doing fun things with him.  They're getting along better than they have in more than a year.  No matter how long it lasts, it's a great sign, and so healing!

Best of all, Lily has had these lovely periods of smiling and laughing this week.  At first it looked like it was tied in to some mania, but as that has subsided, the smiles and laughter have surfaced again.  Yes among tears, but still . . .

I am counting my blessings today.

Tuesday, August 2, 2011


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.