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Everything posted by C_deangelis

  1. Hi guys! So I was diagnosed at 7, and I’m 25 now. Side note if anyone has any questions or needs support or advice I’m always here to lend a perspective about what your kiddos might be going through. I remember it all very vividly. I was wondering if I could get some recommendations for supplements/treatments. I recently started having a bad flare up of OCD symptoms, hasn’t happened in a very long time. My previous DBT training and therapist are a huge help- I can manage it. But I’d like to reduce the symptoms as much as possible. I work in an OR and it’s difficult to manage intrusive OCD thoughts when you’re trying to help with surgeries haha. Also, love to all of you. It’s been really nice reading this forum and seeing how much you all care about your children. You’re rockstars never forget it ❤️
  2. Diagnosed at 7, 25 now and CFS has bee part of my life for what seems like forever. There’s pictures of me from my childhood and there is such a distinct change in me right after I went through treatments. From them on I was pale, bags under my eyes like crazy, and insomnia issues. As of now that’s all still true, I’m chronically anemic and I keep testing with high inflammation (although it could be my meds). I’ve also recently started having some autonomic dysfunction issues. If you don’t mind me asking what are yours? And what anti inflammatory / energy supplements or treatments have you tried? I’m getting desperate as I’m always exhausted and focus is an issue. ADHD meds are the only thing that help but I don’t want to be on them forever if possible.
  3. 25 now, diagnosed at 7. Talk therapy is the biggest thing I can advise. Once the brain knows of certain thoughts and behaviors, It can repeat them. Mine did. And antibiotics can just keep wiping out the gut bacteria that helps with mental health and many of them cross the blood brain barrier causing their own effects. I was reminded of this recently when I took metronidazole/doxycycline and had an awful reaction. Other than that my thoughts are, check your probiotics. Personally some made me feel really weird and I finally realized I needed ones that jived with my body (no histamine, no d lactate) Also maybe just regular baths for a bit, epsom salt can help with electrolytes but as an adult now the only medication I take is lamotrigine and it sort of regulates electrolyte channels. Too much vitamin c makes me jittery also. Maybe give the body a little to find its baseline and go from there. But also- I admire everything you’re doing for your child ❤️ and there’s no right or wrong answer only trial and error with sickness.
  4. Hi there! I’m 25 now but was diagnosed at 7. I had intrusive sexual thoughts, thoughts of hurting others (these were rare and mainly about the people who took my blood because I was entered into a testing program since PANDAS was new-ish), intrusive thoughts about my parents dying (I think this is where a lot of the separation anxiety comes from for PANDAS kids because I was afraid to say the stuff out-loud in case it came true, I didn’t want them to get hurt I was afraid of losing them every moment of everyday), intrusive thoughts about really bad things happening to my dog (I remember fighting an OCD urge to make a symmetrical mark on my paper in first grade and suddenly I heard a yelp (I had hallucinations as well) and my brain kept telling me she was dead, intrusive thoughts about people coming to hurt me or take me away in the night. If you have any other questions I’d be happy to answer any of them. And if it helps at all, I’m a functioning adult (I work in an OR and i’m pursuing being a physicians assistant). I know it’s terrifying but I promise you, you and your kiddo are strong and will make it through this ❤️
  5. 25 years old now, diagnosed with PANDAS at 7 (maybe even a little younger) but I had intense intrusive sexual thoughts, everything you described sounds like PANDAS. Just want to validate!
  6. Oh wow, life suddenly makes much more sense me. I’m 25 now- diagnosed with PANDAS at 7 (was part of one the first studies in Boston) but I always used to have issues in the summer. I LOVED swimming but was always confused by my own behavior. I’d be a fairly social kid most of the time but was struck harder with my OCD, antisocial, severe anxiety symptoms (not all of them but I wonder if chlorine was a trigger for these more than others) during the summers. If it’s any consolation, now I swim at the Y (heavily chlorinated haha) and often feel extremely calm after (I think just the mindfulness for swimming) so I think maybe chlorine makes it worse when the immune system is already freaking out or less developed (childhood, antibiotics). I still get PANDAS symptoms and am trying to work on finding triggers but chlorine isn’t one anymore. But thank you for helping me connect some more of the dots!
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