Times, They Are a'Changin'

Just a rambling ride...this journey into PANDAS and Lyme. And that's what this blog post promises to be. 

Ticks are out in full force. Yesterday, friends of ours went hiking and had to sweep many off of themselves and their dog. Another friend in Rhode Island found an adult tick crawling on her arm. Watch out. These buggers are insidious and dangerous.

Lyme plays a big component in PANDAS. It's possible that not every child with PANDAS may have Lyme (or coinfections,) but many do. And often, it's untreated, unknown. Heck, I would NEVER had known that I have Lyme, or that my daughter does, if my son hadn't been diagnosed first. And he was treated for PANDAS for about 9 months before we discovered the Lyme.

Yesterday, my husband and I left our kids at home with my son in charge while he and I went bicycling for his birthday. It was a warm autumn November 2 day, with golden highlights streaming through the leafed trees and the smell of burnt and decaying leaves. My nose didn't appreciate the allergens. My eyes reveled in the colors.

A year ago, this would never have happened. We would not have been able to leave our children together, even with a babysitter. But life is better, for today.

Last night, my daughter played drums in an "Evening of Drummers" recital. It was rock-and-roll heaven for some, but flashing lights and lots of loud noise for others. My inlaws came; my husband had brought earplugs for them just in case. I felt like I had gone to Hogwarts for the night to experience wizardry, except that each of these wizards had two magical wands. I loved it. 

But I kept an eye on my son. How would he do, with his PANDAS sensation issues? He's again having a little trouble with the sensations that showering brings.

He was great! He not only survived, but he was able to stay for the second half of the show. The constant drumming--which was exceptional--did not bother him. He admitted that the lights increased his tics, and that he couldn't eat with the large crowd there (OCD,) but he survived. Happily.

As PANDAS parents, we are different from normal parents. We scoped out the room and got him a seat to the side where he wouldn't be so exposed to germs. I brought his own food so that he wouldn't eat from the buffet (germy.) He went outside for part of the intermission. After 4 days of him flaring earlier this week, I was a little nervous--how would he fare? My husband thought that perhaps we should bring two cars just in case. My own Lyme acted up and I felt so fatigued that I didn't want to drive. It was all OK. Everything worked out.

I'm joining a book club for the first time in years. Last year at this time, I could not get out at night, could not leave my son for a minute. And, next week, I'm going to the first-ever Northeast PANDAS conference! 

I'm so excited! Yippee! Freedom! I'm trying to prepare the kids for my absence. I have to instruct my husband as to the medications each take. But since he's the one mostly at home with our son, he has the food restrictions totally under control. I let my kids know that they cannot text me to tell me they need me. I don't need guilt trips while I'm away. Last spring, when I was away for a day, my son texted me non-stop that he needed me but never let his dad know that he needed help. Am I nervous? You betcha. I've actually never been away from my kids for two days before!

But I'm also thrilled. PANDAS awareness is building. I intend to post as much information as I can about the conference but I must beg for time...I will return to mounds of laundry and parent/teacher conferences at school. And I intend to have too much fun with fellow PANDAS moms at night to work on transcribing my notes. This is my time...and we all need to find quality time for ourselves so that we can be there for those who need us.

Ironic how my quality time revolves around a PANDAS weekend, huh? No bike rides for me next weekend. Just pray for a flare-free week. 

Happiness = PANDAS getaway.