just sad today

[mmiglio]

I'm so sad today, and I know you are the only group of people on the planet who understand. My daughter had a great day yesterday. After a mild flare in the morning that she was quickly able to turn around, it was like we had our old funny, smart, happy girl back. She was laughing and telling jokes and genuinely seemed happy.

 

Today, almost the exact opposite. Several flares, the same old OCD, some new bad habits like hitting herself and calling herself "bad."

 

Yesterday for a split second in the tiniest part of my heart I thought maybe we were making progress (after only two short nightmarish months). Maybe her immune system is kicking in and kicking this thing. Maybe we're one of those families that wakes up and PANDAS/PANS is just gone. And today, I'm just sad because we're back in the hole that seems very dark and deep.

 

Thanks for letting me share. I know you've all been there.

Maria

[dasu]

Every day is a new day with PANDAS. We dont suffer from PTSD for no reason.

[LNN]

The good news is that you saw a glimpse of the daughter you're fighting for. Hang on to that!

[theotherbob]

I'm so sad today, and I know you are the only group of people on the planet who understand. My daughter had a great day yesterday. After a mild flare in the morning that she was quickly able to turn around, it was like we had our old funny, smart, happy girl back. She was laughing and telling jokes and genuinely seemed happy.

 

Today, almost the exact opposite. Several flares, the same old OCD, some new bad habits like hitting herself and calling herself "bad."

 

Yesterday for a split second in the tiniest part of my heart I thought maybe we were making progress (after only two short nightmarish months). Maybe her immune system is kicking in and kicking this thing. Maybe we're one of those families that wakes up and PANDAS/PANS is just gone. And today, I'm just sad because we're back in the hole that seems very dark and deep.

 

Thanks for letting me share. I know you've all been there.

Maria

Maria,

this sounds like great news. Having a good day is a great sign. With my daughter, we were in a situation that sounds a lot like yours, where these precious moments of being almost back can pop up, but then it slips away.

 

For us, the recovery has not been a straight line. I know exactly what you mean when you say the hole that is very dark and deep. We have had some good periods, and we thought it was over, and then it went to again. But, the good periods keep happening, and I am sure it will happen with you. Just keep hanging on, it gets better.

[mypandabear]

I'm so sorry. I think having a good day is a great sign too! I know exactly what you mean though. We get in a routine of dealing with the "bad" on a daily basis. We just get it done and we can handle it. Then, when we see glimpses of who our child use to be, it makes us sad. It reminds me of what our lives would be like had we not been thrown into this life with PANDAS. Hang in there, we will all get through this!

[mmiglio]

Thank you to everyone for your kind words. After a few more good days we had another day from ### today. But we did see an LLMD from the Jemsek Clinic in DC and have a plan. I feel good about it, but alas, first night with the new medication, and she refuses to take it. She didn't take advil all day today, and OCD is back with a vengeance. I hate this.