We once again addressed Lily's ever present anxiety with Dr. Escobar. A lot of Lily's anxieties seem to go hand and hand with her sensory processing issues. She's also had a lot of medical procedures and surgeries to warrant some of her anxiety. After Lily dislocated her hip last January (2012), her anxiety levels skyrocketed. She had to be put on Valium the entire time she wore her full-body spica cast just to cope with lying in a bed 24/7 for four full months with a 10 lb cast pinning her down. After her cast was removed, we weaned her off of Valium and her anxiety stayed high. Where things like brushing her hair and teeth were pretty unpleasant experiences beforehand, they quickly became "flip out" sessions. She'd kick, yell and flail her arms in complete fight or flight mode. The usual counting to 10 no longer worked. She also didn't want to go anywhere new and doctor's offices were the worst place to take her. We even had to give her a squirt of Valium just to get her into an SUV we rented last summer for a trip because she was so terrified to get into an unfamiliar vehicle. Of course, within 1 minute of being in the SUV, she calmed down and went back to playing on her iPad as if nothing crazy had just happened. Interestingly, we never had another issue getting her into the rental the rest of the trip, but that initial exposure to something unfamiliar turned her into a Tasmanian Devil.
Escobar has been trying to get us to try an anti-anxiety medication for a few years, but I've always balked. We've also had a few doctors try to put Reagan & Kaelan on anti-anxiety meds as well, but I've read about serious negative side-effects especially with teenagers that I've had anxiety myself just thinking about giving my boys anti-anxiety drugs. But after dealing with constant high level anxiety for 4 months, we became desperate. Lily just wasn't functioning very well anywhere. We made the decision to do a trial run after her Down syndrome clinic visit in October. Lily was put on 25 mg of Zoloft once a day. We crush the pill and stick it in her yogurt every morning at breakfast.
Now seven months later, I'm happy to report, we've gotten our Lily back. By that I mean she's able to enjoy life again without anxiety ruling her every move or thought. She's come out of her shell quite a bit instead of shutting down ignoring everyone while obsessively playing her iPad just to cope. One thing I've learned through this is that when you have intense anxiety with that constant fight or flight sensation coursing through your body constantly, your brain shuts down. Your frontal lobe stops working. That in turn makes it almost impossible to learn, make calm decisions, be reasoned with or to think things through clearly. For Lily, it's the little things that we notice the most that have improved. I can now brush Lily's teeth without being kicked or hit. I can brush her hair without her crying hysterically. She doesn't love having either done and I do still have to count to 10, but at least she's fairly calm the whole time. The school also says she is doing well. She's more willing to participate in activities and last month she even participated in the 2nd grade musical without freaking out about the crowd of parents. It was amazing.
At her check up today with Dr. Escobar, Lily stood on a scale at the doctor's office to be weighed (before the only way to get her weight was for one of us usually had to pick her up, stand on the scale with her, put her down, get back on scale to weigh ourselves and then subtract our weight from the big total just to get her weight) and she even shockingly let Dr. Escobar listen to her heart with his stethoscope. Our jaws pretty much dropped when she gave him a high 5, answered a few of his questions and willingly walked over to him when he asked her to look at a toy (giraffe reflex tester) he was holding. Now I'm not saying she's cured. She still has anxiety. She still has autistic tendencies. She still gets upset with unfamiliar things and people. What we see is her reaction is less intense and she is quicker to calm. We are able to talk her through many things that start to trigger her anxiety. She has kept many of her coping strategies as well like her iPad, sensory quirks (hands over ears, ticks, flipping her washcloths) and all of her musical toddler toys. In the long run, we are hoping that she is cognitively able to process her fears better because we have lessened the physical symptoms and for her to feel safe, calmer and happier. So if you are contemplating, fretting about or just starting down the road of anti-anxiety medicines, I wanted to share our own personal experience which has been extremely positive.