Last night I paused outside of Vicki's bedroom and I heard her sobbing. It broke my heart. :( I went into her room and I could hear her sniffle. Sometimes when she cries she doesn't want comforted. I gently went over to her and she said No. No. And she put her arm up as if to ward me off. Then she curled up tighter in her covers with Layse Black Cat. I stood by her bedside for a few minutes and watched her covers rise and fall in harmony with her little sobs. :( This morning she had that look like she'd been crying a lot. Puffy eyes. Matted down eyelashes. It makes me so sad. I go back to this all the time. I wish I could help her. I wish I knew why. I wish she didn't have to cry.
I said in last night's post that I would talk about Vicki's doctor's appointment. So I will. We went back to see her PANDAS doctor... (I think I did a post a while ago about when and how she was diagnosed with PANDAS --- Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections). If you've been following my blog the last few days, you may have noticed a bit of anxiety on my part. Spring has a bad track record for us. For the past few years it seems like each Spring something different happens with Vicki, different bad, not different good. One year she was in the hospital for 5 days when she had her first seizure. The next spring she had more seizures. The next spring (which was last spring) was when everything fell apart for Vicki and she ended up with the PANDAS diagnosis by late summer. So, I kind of get a little freaky every spring. I feel like I am on heightened alert. Always looking for changes and clues as to what will happen. Do I get a little hyperchondriacal? (I'm pretty sure I just made up that word. I like it. Ignore auto correct. Ignore.) Probably. Anyway... do I see things that might not mean anything? I'm sure I do. Do I see things that might mean something? I think so sometimes... Well, this week.. I feel like I've been seeing things... Little things, gradual declines. Subtle and not so subtle behavioral changes. And I think, Damn. Not again.
The thing is... I feel like Vicki is a pretty unique kid. A pretty complicated kid. (A pretty fantastic kid!) And I am not alone in my thinking... I've had multiple doctors, specialists, analysts, teachers, etc... tell me that as well. Like I was saying the other day. Nothing is black and white with Vicki. There are always so many factors to consider. And with some of her recent changes- setbacks- differences... It's hard for me to look at it and say... Yes. This is a relapse of PANDAS. Or, maybe it's just autism. Or, maybe, she is just having a bad day. Or a teenage kind of day. Whatever...
But whatever it is, some of the changes have not been so good, and I want to catch it before it spreads into other facets of her life.
What scares me about PANDAS is that Vicki is STILL on a pretty significant treatment regiment for it. She's still taking an antibiotic 3x a day (since mid-July). And she's still on some other meds related to treating the symptoms of PANDAS. And I wonder... whoa.... if this is the start of a PANDAS flair up, what the heck else can we do? And if it's not.... well, that sucks too. Because there is no pill to take to get rid of autism. Sigh.
And I think I've said this before... but the latter scenario, where Vicki's changes may not be a direct result of PANDAS... that scares the heck of out me. Because even though PANDAS is horrible, horrible, horrible... once we got to the right doctors and started the right treatment, Vicki started getting better... Slowly, but we could see it. And if it's not PANDAS and if it's just autism, well...
The PANDAS doctor set forth a somewhat different plan of care this time when we went to see her. And what makes me super nervous is that it's going to depend on a series of things to happen for us to get the treatment that we would all like to try and feel is necessary for Vicki. And like all things medical, it will depend largely on test results (of which a new test was recently approved but not likely covered by our insurance. Bye bye 900+ dollars for that). Once we get our doctor to write the script for the test, and find a lab that will draw the blood and send it off, we will have to wait, of course, for the results. If there is no significant finding, then... well... that's about it. If there is a significant finding, then we start the insurance dance to get approval for IVIG. Not approved, it will run us at least 15,000 for 2 days of IVIG. And, like with most things in life, there are no guarantees... no guarantees that Vicki's labs will end up showing high enough antibody levels... there are no guarantees that insurance will cover the treatment, and there are no guarantees that the treatment will be successful. So, what I see in our future... is more tests and doctors for Vicki. :( More days off work for my husband. :( and more coordinating, calling, scheduling, faxing, writing and researching for me. (Notice my list is longer. Because that's what I do... make it seem like everything is so hard for me... me... me... me....)
And I think what scares me the most.... because for years now I've had this gnawing feeling in my gut that IVIG will do amazing things for Vicki (I think I've told you some of my hypothesises before... I had IVIG when I was pregnant with Ally...)... what if things actually pan out and Vicki gets IVIG? And nothing happens. That's been a door that we've kept propped open for years. What if it gets shut? Then what?
I guess you just keep chugging on. Keep taking it one day at a time. Keep making those Vicki-did-it lists... and keep smiling. And keep believing. And keep celebrating. And keep on keeping on.
And guess what? Vicki wasn't crying at bedtime tonight! And Vicki didn't have any poop accidents today! And Vicki went for a walk today (granted, daddy had to go to help... but still, Vicki went)! And Vicki came to Ally's soccer game and sat outside in this most awesome spring weather and colored the most beautiful princess pictures. AND we had an impromptu dinner outside on the deck (meaning it wasn't on her schedule) and she did it. She smiled. She ate her homemade pizza and salad with ranch dressing. And she enjoyed the fresh air and the spring. If I look at spring differently, if I see spring in Vicki's twinkling eyes and slow little smile and the little breeze blowing through her hair... if I think of spring in this way... maybe I won't be so scared and maybe I can just stop and take a deep breath (and then sneeze because of my pollen allergies... ha!) and keep on keeping on.
xoxo
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