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Young adult w/ OCD and history of childhood Strep and sudden onset


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I have read that adults cannot have PANDAS, as it is a pediatric disease, but I am wondering if I could not have had PANDAS as a child that went untreated. I am currently in my mid-20s and have been treated for OCD for some time now.

 

My parents report that I was bubbly, carefree, and joyful until the age of 4, when overnight, I became unconsolably anxious and irritable. My parents also recall that this was in fact after a strep infection. My mother was concerned about this sudden change in temperament, which included tantrums, obsessive fear of upsetting others, extreme internalization of others' commentary/criticism, an inability to handle the anticipation of events, sensory overstimulation (hating the feeling of tights and certain fabrics to the point that I could not get dressed, being unable to handle loud noises (if people raised their voices or a room was too full, I would feel as if the world was spinning and cover my ears and cower), extreme perfectionism, and general fear/panic. The pediatrician assured her that the tantrums were a normal phase of child development and that I'd outgrow the other behaviors. Unfortunately, the symptoms did not go away. I had strep multiple times, and because of a high pain tolerance, rarely let on that I was really sick until it had progressed. Once, around the age of 7, my strep throat had progressed into scarlet fever before I started any antibiotics.

 

It wasn't until I reached my teens that I was diagnosed with OCD. Then years later, someone mentioned PANDAS, and I shrugged it off. Now, I'm wondering if I had this as a chid and unfortunately didn't catch it in time to prevent damage to the basal ganglia. If this is possible, is it worth trying to see an expert? Is there anything I should/can do?

 

Thank you so much.

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Hi, and welcome to the forum.

 

I, too, believe that I had PANDAs as a kid that went undiagnosed; I've contended with anxiety issues all my life, though, for the most part, my OCD has remained sub-clinical. But I've definitely developed certain coping techniques that, had I not, I expect my OCD could have gotten more difficult to control. PANDAs as a diagnosis didn't come into my life until my son was diagnosed with OCD at age 6; the OCD came and went until he reached 12, at which point his world inexplicably completely blew apart and the anxiety and OCD became completely debilitating. Finally, a PANDAs diagnosis and treatment, and a turn-around for him. He is fully functional and generally happy and well-adjusted these days, though he continues to contend with some OCD, especially when stressed (he's 20 now and living away at college).

 

Honestly, I don't know that PANDAs or the autoimmune issues permanently damage the basal ganglia, and I don't think the researchers know that for sure, either, at this point. Because I went all my life without PANDAs treatment, and my son went for 6 years before we could convince anyone that his OCD was related to a strep infection and therefore treat him for it accordingly, what I do think can happen is that 1) over time, your brain chemistry (particularly with respect to neurotransmitters) may be altered by the PANDAs experience and/or living with anxiety and OCD itself, and "reprogramming" that may be a lengthy and tedious undertaking, and 2) because the OCD coping behaviors are essentially pervasive, strong habits, eliminating all of those at a more advanced age, after years of engaging in them, can be a tall order.

 

In terms of seeking PANDAs treatment, specifically, at this point in your life, I would consider the following. Do you have any other indications of autoimmune dysfunction, like IBS, eczema, allergies, etc.? If so, then it might be worth testing to see if you have elevated titers (antibodies) that might be settled down via abx or IVIG. Do you have chronic sinusitis or other upper respiratory issues? If so, know that there have been several anecdotal accounts of PANDAs suffers with no discernible, active infection who, via sinus scoping and/or other testing, are found to be harboring strep bacteria within biofilms in their sinuses. We did not go through the scoping with our DS, but because his titers were so high, we were able to secure long-term abx for him and, over time, the sinus issues he'd had for years resolved and have not returned since, convincing us that this was likely part of his condition. At any rate, if either of these situations resonate for you, I would think pursing some basic immune testing, if for no other reason than to rule it out, may be worthwhile.

 

In terms of PANDAs treatment at this point to 100% eradicate your OCD? I would never say "never," but based on our experience, again, that may be a lengthy road, if at all possible. Not necessarily because of damage, per se, but because of altered brain chemistry and/or learned/ingrained habits, as I mentioned before.

 

In the end, I guess I would follow my gut and do what I could to rule out any potential treatments that might help me be my best, happiest, most functional self.

 

Good luck to you!

 

Nancy

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I think people mean that there is no such thing as adult "ONSET" PANDAS. Clearly there are adults with PANS/PANDAS that were missed. My husband among them. It continually got slowly worse and by his mid-50s presented as early onset Alzheimers...totally reversed with PANDAS treatment once ours kids were also diagnosed. He's 63. His coping mechanisms were horrendous...one reason to treat early. I'll keep it at that...

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I think about this issue from time to time. My OCD has improved (lessened) after working w/a Functional Medicine MD to address Babesia and inflammatory autoimmune symptoms, including EBV flare-ups. Prior to that, I was already working with a CBT therapist, and taking NAC.

 

I was hospitalized as a 6 yr. old with Haemophilus b (now vaccinated against) caused epiglotittis and my OCD started shortly after I came home. Granted, as an adult my therapists thought the OCD was brought on by the trauma of the early hospitalization and surgery, and I agree that that might've worsened it besides the infection. I have a lot of other autoimmune health issues as well and my IgG level is on the low end. I didn't have other PANS symptoms as a child though.

 

Good luck.

Edited by tj21
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  • 1 month later...

YES YES YES.  Please search my old posts for my story.  From my OWN experience, I know that it continues into adulthood.  Doctors need to start listening to patients' stories.  This thing ruined my childhood and young adult life.

PIK

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