happy halloween

wow- last year seems like a long time ago.  and i'm so thankful for that.  that it's not last year.  that we've come this far.

last halloween i won't forget. it was a dark spot with zoe.

she had been taking abilify which we had reluctantly put her on.

(i need to pause here.  there is no data on nonverbal learning disorders and medications.  there is very little data on autism and medications.  medications are primarily used to treat the symptoms associated with learning disorders/ or autism.  medications are often used 'off label' for other things than they were marketed for. at this point zoe was having a hard time with anxiety, and with sticky thoughts, and with getting out of control as a result of both the anxiety and the sticky thoughts.  we'd tried a few other things before this- prozac, which was helping but not enough, and amantidine- which for her didn't help at all, and some ADHD drugs which didn't help either.  i should also note, that we have a very good child psychiatrist who we trust and adore who helped with all this and who we use in combination with lots of non-medical therapies.)

abilify is an anti-psychotic drug. a 'big time' psych med.  a drug with potentially serious side effects. a drug with stigma. i'd been avoiding it. waiting. until it was so bad- that we decided those weren't big enough reasons to hold back something that might help her.  i was going through thoughts in my head like, "who will ever hire her if she's on abilify?" as if that had any relevance to our lives at the time.  it was a time of sadness and desperation and some very close friends (who were both psychiatrists) enabled me to see this medication with out all it's labels, as something to consider.  something that might help. something that doesn't have to be forever.  they reminded me that we needed to make a move because she was suffering.  she was feeling so out of control that she was miserable.  so finally, we decided to try it.

it was like magic.  really.  i could have left medicine and become a drug rep for abilify.  she, with in a few weeks, calmed down, she wasn't agitated, she could focus better, she could learn.  i have to say that i was amazed.  i was thrilled and so was she.  we'd started it at the end of august and we had a great september. then around the beginning of october i noticed she kept doing some weird thing with her mouth- like a teeth grinding motion. i kept telling at her to stop that thing with her mouth.  after about 2 weeks it dawned on me that it was so obviously a side affect of the drug- tardive dyskinesia- one that can become permanent if the drug is not stopped right away. i felt terrible that i'd missed it and even worse that i'd been yelling at her to stop it.  i called the psychiatrist and he told me to stop the drug immediately and give her a drug that would counter act it.  so three days before halloween we stopped abilify and gave her cogentin.

i was crushed. i'd gone from wanting nothing to do with abilify, to being terrified of what life would be like again with out it.  i was also stressed that this odd new mouth motion would never go away- my daughter with the sequelae of her psych med-to add to her list of trouble.  unfortunately to make matters worse- she had an adverse reaction to the cogentin- she was awake- wide awake for three days and nights.  it was awful.  and that is where we were last halloween.  on day three of no sleep- still grinding her mouth- and pretty much out of it.  because we had two little boys who were very excited about halloween- and about being a pirate and a ghost- we pulled it together and when out trick or treating and to a halloween party.  zoe went as some sort of a fairy, she was running on fumes. she finally crashed at the party and fell asleep on the couch.  she has no memory of last halloween- i think the no sleep erased it all.

so this halloween was fantastic.  and even more fantastic as i look back over the year- and i remember where we've been.  her jaw motion symptoms did resolve completely after a few weeks.  we were able to find another medication that has worked even better- with no side effects. (a drug used to help alzheimers patients- talk about off label). this year we planned the costumes- we went to two parties- one with her best friend and lots of people- lots of kids- no meltdowns. and the only stickiness was on the kids hands from eating so much candy.

happy halloween!