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Hello PANDAS family!

 

Just a quick update to let you know I am still doing well, though still experiencing PANDAS symptoms with immune system stimulation, as I did just recently following a very bad upper respiratory that went into bronchitis and gastritis. That said, PANDAS symptoms came and went. Joint pain arrived on a Wednesday. OCD arrived on a Sunday. Tics arrived the following Wednesday. All were gone by the second Saturday. No med intervention besides using a little extra Xanax. I took a couple days off from school, got some TLC from family, and was back to it.

 

Finishing my third year of college, hoping to graduate in the next couple of years, been living on my own for 1.5 years a couple of hours away from my parents and about an hour from other family.

 

As always, fingers crossed for you all!

 

emmalily

 

24yo, PANDAS since age 5. Diagnosed at 19.

Edited by emmalily
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Thank you for this.

My DS14 was diagnosed at age 4

He has had a rough year

Now that he is older it is scary as a parent. He flared last Saturday at the movie theater- they almost called the squad but we got there in time

He was better the next AM after a 30mg prednisone increase

Nice to hear of the older patients and how they are doing and managing...since we are now entering that territory.

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Emmalily --

 

So glad to hear you're doing so well and that you're able to manage the flares! I'm sure you wish the flares didn't occur at all, but it's a major step toward full independence and a full, rewarding life, don't you think? Thanks for checking in and giving us all a bright beacon for our kids' futures!

 

My DS is doing pretty well, himself, and will be entering college about an hour away from us in the fall. Thanks for your earlier guidance regarding accommodations in college; the disability office at the university has been awesome, accepting his senior year high school IEP as sufficient information for college accommodations (they only denied one feature which, frankly, DS hasn't utilized much in the last couple of years, anyway). And they've granted him a private dorm room, too, which will work well for him, at least for his freshman year, we think. We're cautiously optimistic about his future and opportunity there.

 

Thanks again for the good news and solid advice in recent years! You go, girl! :D

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Congrats! Thank you for taking some time to document your progress. My kids - only 6 and 7 - know how limiting PANDAS can be and worry how limiting it can be to their future. We want them to live confidently without the fear PANDAS brings so when they ask the "what ifs" we try to gloss over things and talk about all the great treatments and how when one fails another one can be used. It must be apparent to them as they then ask "what happens if IVIG, PEX, Rituximab fail, whats next?". So its nice as a parent to have relate real stories of how kids with PANDAS can grow up and live a full and rich life.

Edited by dasu
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