Discovered in Adulthood?

[bentushar]

Hi, I'm a 19 year old man, kid, idk I'm sorta in between man and kid. Anyway I've always been a sort of weird kid, but very intelligent and high functioning. I always had some tics and weird mood behaviors, social awkwardness, etc. but was more or less a functioning member of society so my parents never saw any reason to investigate further. Over the summer I met with a therapist for the first time to help sort out attention/studying issues that I was having my first year of college and I ended up being diagnosed with ADD and Autism, I also used to be a major strep carrier, as an infant I had a severe case of scarlett fever and frequent cases of strep throughout my childhood, like multiple instances a year. Needless to say, PANDAs instantly came to mind, but I can't seem to find any info about how PANDAs affects people in adulthood. All these disorders are all new news to me, and while they explain a lot of my quirkiness, I'd really like to learn more about them and how they affect me, ya know? Any input from you guys would be greatly appreciated.

 

Thanks,

bentushar

[dasu]

There isnt much out there written from perspective of the patient, mainly its parents. But there is a lot of first person information on symptoms like OCD. This film captures some of that http://www.ocduk.org/locked.

 

Here is one awesome blog from a super-smart and articulate woman about your age with PANDAS https://thedreamingpanda.wordpress.com/

Edited October 15, 2015 by dasu

[MomWithOCDSon]

Bentushar --

 

I have an 18-year-old "man-child" who's been through the PANDAs experience, and it sounds as though you and he have a lot of similarities in terms of your childhood, "quirks," tendencies and diagnoses. My DS has, at various times during this journey, been diagnosed with ADD, ADHD, Asperger's and OCD; when he's healthy and settled in comfortably in his life circumstances, you probably wouldn't think he had any of those conditions unless you knew him really well and picked up on a few subtle, remaining behaviors/habits that he developed over the years as coping mechanisms. And, to this day, he's pretty socially awkward . . . until he gets to know you.

 

My DS, not unlike you, likely had PANDAS for more than a decade before actually getting that diagnosis and being pulled back from a major abyss at age 12 via antibiotic treatment, therapy, supplements and some prescription medications, as well. Today he's in college and doing quite well, though he still gets anxious and still feels awkward at times and can revert back to some old OCD habits as a result of the stress. But he knows what he's dealing with now, he recognizes it, and he fights back pretty effectively and pretty quickly.

 

A question I would have for you is, do you still get strep infections? And if/when you do, do you notice changes in the way your brain functions, or significant changes in your mood? Or do you feel "more" or any of the things with which you've been recently diagnosed -- ADD, autistic (I'm presuming this is high-functioning, so probably Asperger's?) -- when you're dealing with a virus or a cold? Do you have allergies (environmental or otherwise)?

 

Or are you pretty stable -- pretty much the same -- most of the time, irrespective of immune issues? I've seen accounts by adults who feel they suffered from PANDAS growing up, and I'm one of those who's pretty sure I had the condition myself as a kid, though I went undiagnosed. So, I had behavior problems as a kid, and as an adult, it took me longer than some to find my way to a place of maturity, stability, coping with my anxiety in acceptable ways instead of acting out, etc. Now as my son enters adulthood, I'm grateful that he 1) has had an earlier diagnosis than myself, even if it was still significantly delayed, and 2) thus has been given coaching and tools for confronting remaining behaviors.

 

What I don't know is if he -- or I -- will ever be anything other than what we are now, despite treatment. I don't know if the delay in treatment resulted in the brain forging these pathways that are either impossible or very difficult to undo, or if healing continues for years, once you find those things that support it, and thus we'll both be "better" as the years go by, though we've both reached healthy, functional and happy -- even peaceful -- as of today.

 

What I do know, however, is that there are resources and research via the PANDAS family that helped my son grow into an amazing young adult, and I'll forever be immensely grateful. You sound like a very intelligent, articulate guy, so my guess is that you'll find the resources and tools that "speak" to you . . . that feel right, supportive, and effective. Wishing you all the best!