I know, I know. It’s been a long time since my last update on our PANDAS journey. Honestly, I just couldn’t share until I was sure…. but now I’ve decided that may be too long a wait.
We did the IVIG (click here if you don’t know what I’m talking about) in January and then just let it ride. We had some epic tantrums-we were warned the IVIG could cause an increase in PANDAS behaviors before the turn around-the tantrums were about one a week the first 4 weeks. EPIC! As in, what was I thinking taking this child out in public? Can we get out of here before someone thinks I’m kidnapping him and we get arrested?
The 3rd and 4th week we went on a vacation I had planned last fall when things were rapidly improving. I was a bit nervous as that is the period when things can get a little crazy (all the symptoms flare up) post-IVIG. But other than 2 big tantrums and our usual low-level hard to tolerate PANDAS (think difficult behavior much of the time-back talk, whining, etc), we saw a lot of improvement. B was willing to stay with my mom one day while I ran to the store to get his antibiotic refill-first parental separation in about 2 months! And he played and played with cousins and kids he had just met. When the PANDAS is bad he is usually in more of a clingy, ‘I wish I could play’ kind of place.
After we returned to Maryland, the big improvements continued. With B making friends at a museum and playing with kids pretty much everywhere we went for a week. He also started talking to adults again! Yay! He’s talking to strangers. It’s a weird place in my head.
And then the crash!!!! This is what is so hard about PANDAS. It feels like every time I get my hopes up and start to think, “yes, this is it, he is coming all the way back this time” things takes a reversal and he starts to decline again. And let me tell you, that gets harder every…. single…. time.
We’re not sure why his symptoms started to get worse. I could see a noticeable decline in his handwriting, and the anxiety and the acting out was increasing rapidly. We did have some colds go through the house. This can increase PANDAS symptoms (even if the PANDAS child doesn’t seem ill) as it gets their immune system more active. Remember, our real problem here is antibodies attempting to do their job but attacking healthy brain cells instead. B was also in need of some major dental work. He had 6-7 cavities and multiple dentists told us they thought he would need root canals and maybe some teeth pulled. Ugh… .are you kidding me??? He’s 8 and already been through hell! We think the syrupy liquids of the constant antibiotics has caused a lot of trouble. But again it’s part of the guessing game. The other question was, ‘is the inflammation under these teeth causing a larger immune response and increasing his symptoms?’ Due to his level of anxiety and the amount of work we scheduled total IV sedation.
So… last weekend, things started looking up again. On Tuesday we did the dental surgery and it went well. This Saturday, we had a symptom free day. I’m not sure we’ve had one of those all year! So, once again we are waiting and hoping and terrified about being optimistic.
I’m trying to get back to blogging and will continue to share our PANDAS story. Thank you for the continued love and support. Much love from all us.
~Ali, Chris, B, & C