Well, It’s been quite awhile since my last post. I dilly dally on giving updates about our son’s condition because it is so variable. Right now, I want to shout this from the rooftops:
HE IS AS WELL AS HE HAS BEEN AND IT IS AS LONG AS WE HAVE HAD A GOOD SPELL LAST!!!!!!!!!
What??!?! I know, it is total awesomeness to write that. We have seen slow but steady improvement since about the middle of July. You may remember he had dental surgery in March, after that we saw steady improvement (in PANDAS-land that means week by week, not day by day as things never seem to go in a straight line!) until he came down with something in May. He was sick for a weekend, but it was different from other illnesses as he did have a fever and a rash. Often he has his autoimmune PANDAS response, but no normal illness symptoms.
We don’t know what it was, but a strep test came back negative. Although, he has been poked and prodded and is so fearful now that it’s impossible to tell if they actually get a culture or not. He was super chill while sick but once his immune response got going, the PANDAS symptoms (OCD, anxiety, echolalia, mood swings, and sleep disturbances) heated up again. That continued through mid-July, when he lost a tooth, too. There is anecdotal evidence that mouth bacteria getting stirred up when a tooth is loose or dental decay is present causes more PANDAS symptoms so that may have contributed to the craziness as well.
From mid-July till now, we have seen more of B’s personality than we had over the last 18 months. Oh, how it makes me teary to think how long he has dealt with this. There are still ups and downs, but overall he is himself. It’s so weird to say something and him laugh and make a joke about it. Or to tell him “no” and hear a reply of, “okay, mama”. These are things that just didn’t happen over the last year.
I think at some point, I had to stop hoping for him to come back to us, because I didn’t know if he would be forever changed by the lost year and a half. I didn’t know if he would be a different person. I wondered if we’d have huge discipline issues because, you can’t discipline a child with PANDAS. They don’t respond to caring, to cajoling, bribing, or punishment, or reward charts unless their brain is working enough for them to govern themselves. And for the greater part of the last year and a half his wasn’t. We let rules go. We looked or ran the other way.
He isn’t symptom free. He is super stranger weary and still having a hard time separating from me. And yet, if he panics and cries about something, I can comfort him and he responds. When he acts up and tests a limit, I can ignore him and he comes round when he’s ready. He plays with his sister for hours and we’ve signed him up for golf camp in a couple of weeks. I’m hoping I won’t also have to go to golf camp, too, but even if I do, it’s such a big deal that he is able to go and interact with other kids and a camp counselor for a day.
He’ll just come scampering through the house and throw his arms around me and tell me he loves me. I think he can’t believe it either.
So while we enjoy the last few weeks of summer, we celebrate and we hope. Much love and thanks to all of you out there!