"Back when I had PANDAS"

[momcap]

I had a very interesting discussion with DS8 last night. He put his left hand on the microwave stand, and then told me, "Back when I had PANDAS if I did that, I would have to do this." He removed his left hand, and put his right hand in its place, and told me, "I had to make it even". I never knew he had evening-up OCD. With the raging and severe germaphobia, I never noticed. So I asked if he still feels that way now. He said, "No, that was in like grade 1 and 2 when I had PANDAS." And then it struck me, he's saying WHEN I had PANDAS - past tense!!! He doesn't feel like he has PANDAS anymore!!!!!!

 

I don't even know if it is possible to not have PANDAS anymore. But I do know that his ASO which was stuck in the 500s for 2.5 years is finally coming down. We do bloodwork every month since starting lyme treatment in August, and his November ASO came back at 304!!! It hasn't budged from mid-high 500s in years, and now it's falling! YAY!!!!

[LNN]

Timely post! In Sept, he wanted me to talk to his teacher to explain his situation - something I've done for the past 3 yrs. He wanted me to tell her about his 3 diseases (Pandas, lyme & pyroluria). I have probably been too honest/TMI in all of this with him, as the poor kid was starting to feel like a walking encyclopedia of illness. But in the past few months, he's gotten sooo much better (CORE + other vitamin/mineral supplements) that he's starting to divorce himself of this part of his identity. He recently started talking about Pandas in the past tense too.

 

I know Pandas is considered autoimmune and last year I remember feeling dismissed by our LLMD on the Pandas stuff, like he didn't believe in it. He went on about the bucket and how if you fill it with too much disease/stress, it overflows and if you can empty some of the bucket, the body can restore its own balance - i.e. you could reverse "autoimmunity" - which at the time seemed ludicrous to me. I'm much more in line with his thinking now. I don't know if DS still has a tendency toward Pandas - hasn't had strep since his T&A two years ago. But I know he feels like a normal kid now. He watched his sister struggle with OCD and he finds the concept "odd" - he knows he had it but it feels like it happened to someone else. It's not who he is anymore. Let's hope he's right!

[rowingmom]

Not that we have an actual PANDAS diagnosis, but DD10's motor/vocal tics which used to flare with viral infections have not reappeared with her last two colds. I like the bucket analogy.

[momaine]

So so so happy to read these posts. I cannot wait until this is all in our past. Dd's pandas began with recurrent sinus infections which have not returned since starting lyme/bart treatment. I have no idea where the pandas ends and the lyme/bart begins but I hope the sinus infections are a thing of the past.

 

Enjoy your holidays!

[momaine]

So so so happy to read these posts. I cannot wait until this is all in our past. Dd's pandas began with recurrent sinus infections which have not returned since starting lyme/bart treatment. I have no idea where the pandas ends and the lyme/bart begins but I hope the sinus infections are a thing of the past.

 

Enjoy your holidays!

[laure]

I LOVE that Momcap! We have had similar discussions, and my dd10's confidence has really grown through this, because she really does see huge improvement in school/reading/focus/sports/music since treating aggressively for PANDAS then lyme/bartonella/babesia. She now says that she knows she will be "even smarter" when the doctor finally tells her that everything is cleared up. So a little medical information is probably not TMI but perhaps a good thing, because they can blame the disease and not doubt their own abilities.

[momcap]

I LOVE that Momcap! We have had similar discussions, and my dd10's confidence has really grown through this, because she really does see huge improvement in school/reading/focus/sports/music since treating aggressively for PANDAS then lyme/bartonella/babesia. She now says that she knows she will be "even smarter" when the doctor finally tells her that everything is cleared up. So a little medical information is probably not TMI but perhaps a good thing, because they can blame the disease and not doubt their own abilities.

 

I've worried quite a bit about how much info is too much. In DS's case he's very self-aware, and asks insightful questions. So on this journey I've mostly been transparent with him. With all he's going through I thought it would be helpful for him to understand as much as possible, and like you said, blame the disease and not doubt his abilities. Poor kid doesn't really get to be a kid does he? <Sigh> I did get criticized from the school, when DS started talking about PANDAS at school. He was saying how he's afraid of his PANDAS, and then started blaming everything he did on it. I've worried about giving him too much information while he has OCD and will get stuck on it, and especially the germaphobia! But it is what it is. It's already a terrifying experience for him (and for us parents!!), and I imagine how much scarier it would be not knowing why it's happening. So for better or worse, he knows all about PANDAS and lyme, what he's taking, and why.

 

I also don't know where PANDAS stops and lyme/bart starts. I don't know if that line can be drawn. LLM's bucket makes sense. It's all mixed up in there, right? We've seen amazing improvements, but are still struggling through other symptoms. LLMD says he will probably take a couple of years to heal. It sounds like forever to me, especially on the bad days, but I try to stay focused on the miracles we are already seeing. I think this is the first Christmas in 5 years that I've looked forward to the new year with hope!

[SSS]

Awesome!

[Suzan]

That is amazing! That is so great that he can recognize it and that he feels so much better!