Friday, December 10, 2010

finally something!

to blog about that is. I have been struggling lately to figure out what to write about. another rett mommy pointed out to me that she just writes-and doesnt like to put too too much thought into it and I realized I might be over-thinking it a bit. and I am. I tend to do that. but i know my best posts are the ones that I really have no plan for-I can't try too hard.
So here goes.
Many of you know that we have been trying to get our little energizer bunny to slow it down-simmer down-pump the brakes a bit-so she can focus and COMMUNICATE. So we have gone the medication route. I know there are moms out there who are totally anti ANY medication beyond anything natural and I understand that and respect that. But for us, for me, for Avery-I know it is the route we must travel for now. She literally bounces off the walls and we got reminded of that this week as we pulled her off all but one of her meds.
We started her on Tenex this summer along with Prozac (sometimes Tenex can make things worse before they get better and the Prozac could help with that). We saw a change-Avery stopped doing her repetitive behaviors of tapping, opening and closing doors and drawers and her screaming was reduced. Slowly we started to increase the tenex and decrease the Prozac. Avery would fall asleep every now and then when we didnt want her to, but she would get used to it pretty quickly. Then, the Tenex wasnt really getting her as focused as we had hoped and we moved up. To Risperdal. An anti-psychotic. yikes. But we trust Avery's Rett pediatrician and she made so many phone calls and talked to so many other specialists about Avery and they all agreed this was the next step.
We started it last Friday. A mini dose. By sunday she was already better. She was an angel that day. So sweet. On Monday, her behavioral therapist notice better hand function and more focus. Lots of smiles, giggles, loves. YAY! It's working. So we upped it. Wednesday morning I gave her .5, instead of .25, she had a good day at school and had a great behavior session too. then we gave her the afternoon dose of .5 and she was fine. At about 6:15 I noticed Avery locking one of her legs while walking. She would stop and lock the leg and stand there for a second, just laughing. Weird. Then about 15 minutes later-creepy town. She was bent over to the side walking with a wide and unsteady gait. It was like scary movie creepy. I emailed Dr. Mary. Sounded to both of us like dystonia-which can be very serious and is not to be messed around with. We spoke on the phone and decided no more meds the next day. She had a great day at school. Even pooped on the potty that afternoon! We still gave her the Clonidine that night and she took much longer to fall asleep with the Tenex out of her system. This morning she had started again opening and closing the trash can and the drawer in the kitchen.
Today, luckily, we had our appt at Katie's Clinic. We got to talk to one of the top psychiatrists in the area-who Dr Mary had consulted with on Avery. He was wonderful. He told us to go back on what we were doing before and we would add Abilify. If that doesnt work, he has a few others we can try. Cross your fingers that this will be a winner.
By the end of the clinic appt, Avery was WIRED. buzzing around. squealing. eyes like saucers. yikes.
So, here we go again. Believe me, I wish we didnt have to go this route. But if Avery is screaming and moving like the tasmanian devil she isnt going to learn or be able to communicate. And that isnt helping anyone. If meds ARENT the answer, ok, but we have to see if they are. I already know they work, its just finding the right ones in the right doses and Im confident with the professionals we have on our side.
On a more exciting note-we saw the amazing Judy at clinic-she is the communication person. She knows all about eye gaze and ipads and finding ways for our girls to speak. We got Avery on a Tobi device which uses eye gaze and/or touch screen technology. I had sent Judy the famous bus video prior to coming and she had a page set up with choices of different videos. Barney, Elmo, Dora, Backyardigans etc... and the bus video. Her eyes chose Backyardigans first-maybe b/c it was in the middle, maybe because its the only show she has seen out of all those choices, who knows? But then, she pointed at the bus! touched it. and it played. and she was thrilled. So Avery wont be an eye gazer for now. We will be working on getting her some sort of touch screen device for school to try out. Avery's fantastic teacher came to clinic with us today-on her own time-and was quite impressed with Avery. You could tell Avery was having fun with it. I got tears in my eyes. possibilities.
We saw the music therapist too and Avery was digging the guitar. She used to find this little book we had with a guitar in it and say "gu" when she found it. and anytime a new instrument was presented-she just pointed to the guitar. cute.
the best part was of course running into other parents and girls. and I got to meet one of the awesome clinic volunteers-whom I had only known via facebook. All such lovely people there. They are a safety net in this rough sea.
In other news- Nolan is SERIOUSLY 2. enough said.


Dawn said...

I like this post, just a general update on the day to day struggles. I hope you find the right med combo and don't feel guilty about your decision. As you said, you are doing what is best for Avery and your family! xoxo!

Zenaida said...

You have great judgment and because of that Avery will do better. Good for you Erica!


The MacDonald Family said...

I love this post too!! So glad Avery is going to start using touch screen! Awesome! The meds are a balancing act, trust your instincts, you're an amazing mom and exactly the perfect person to care for her! Hugs!!!

mj said...

yay for a touch screen! that's awesome. don't doubt yourself. one thing i've learned throughout our mess so far is that a mother's instincts are usually right. if you think meds are the route to take, meds are the route to take. :) you'll figure it out and avery will soar.

still love that nolan even if he is seriously two. can't wait to see you next week.

Laura Taff said...

No one can tell you exactly what to do. This is all trial and error. We keep what works and toss what doesn't. I can totally relate to the ignorance is bliss post, too. I remember those days when we thought Anna was just a little off in development but would catch up and had no idea of the life ahead of us.

We just take it as it day at a time. If she seriously needs the meds, she just does and no one can tell you that's "wrong".