Emmalilly

[MomWithOCDSon]

How's it going these days?

 

I think of you often, as you're sort of a "beacon" of the future when I look at my 14-year-old DS and hope he comes out the other side of this PANDAS thing as well as you appear to be doing.

 

I hope you're faring well and enjoying approaching adulthood! You're probably busy, but when you have a chance sometime, check in and let us know how you're doing!

[emmalily]

Hi,

 

It's going alright. I'm still sorting out some lingering health issues (GI stuff and some general dysautonomia (both of which my doctors believe are tied to the autoimmune part of PANDAS)) but they are minor in comparison to where I was in the middle of PANDAS.

 

I have been off antibiotics since May 9th, but I have them stocked just in case . I took them with me on vacation this summer, never know when/if something might crop up.

 

At the end of August I had two days about a week apart where I felt some OCD creep in for a couple of hours. At the same time I was broken out in hives and having serious hayfever (all the goldenrod where I live had just bloomed). It went away quickly both times. It had been the first allergy season since starting to treat PANDAS that I had been off antibiotics. I think in the spring when things start blooming I'll just up the antihistamines and that should probably take care of it.

 

I still have some small sensory things, but nothing that really interrupts what I'm doing.

 

I just passed a year from the point where my day-to-day OCD went away. Pretty cool.

 

Turning 21 next month!

 

Thanks for checking in with me. I'm not on as much but I check every once and a while and think about you all.

 

And just a funny story for you guys:

 

I was dreaming this morning that I was back in school and that a teacher kept sending me to the nurse's office to pick stuff up for him. After I got back from the nurse's office I couldn't stop washing my hands. It never felt like it was enough and I was really starting to freak out--and then I woke up. I just laid there in the dark laughing at myself, going, "Phew, glad that wasn't real." It gets funny eventually. What a thing to have a nightmare over.

 

How's it going for you?

Edited October 7, 2011 by emmalily

[KaraM]

Wow. Emmalilly, this is just warming my heart right now. I am so glad for you. You were suffering for so long. And I am so proud of/for you. You really educated yourself and advocated for yourself. You are very strong and inspiring young woman.

 

My warmest wishes for continued health,

Kara

[MomWithOCDSon]

Thanks, Emmalilly! So glad to hear things are going well for you!

 

Once again, I find you and your experiences very inspirational, and I can only hope that my DS comes through all of this with similar strength, grace and insight.

 

We're trying to come off antibiotics right now, but I think allergy season is beginning to give us a little bit of interference with that. Like you, I think we need to up the antihistamine, perhaps. There's nothing consistent at this point, but my DS has had a few instances in the last 2 weeks of what he refers to as "stress." He keeps coming through those moments well without it spiraling downward as it has in the past, but after two years of PANDAS "ups and downs," every little "down" moment is immensely frightening. But you're trying to keep how scared you are out of your face and out of your reaction to your child so he doesn't take any clues from it and stop believing in himself and his healing. You know what I mean?

 

Anyway, you continue to be a beacon of hope for us! Keep living the dream, and leave the nightmares behind!

[kimballot]

Emalily -

So happy to hear

 

... and happy early birthday

[philamom]

What a beautiful birthday present. Happy 21st!!

[emmalily]

Thanks everyone!