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Everything posted by momcap

  1. I "knew" when DS took a 10 day course of amoxicillin for an ear infection and from days 3-10 he was a completely different person. He was so calm, pleasant, happy, and flexible. I didn't know about PANDAS yet, but that was the moment that made me start searching. After reading about PANDAS I was pretty sure this was it, but it was the Cunningham panel that gave me confidence.
  2. To download raw data: Once you have signed in, on the top right corner of the screen you will see your name with a down arrow beside it. Click the down arrow, and a menu drops down. From the menu, click on browse raw data. Now just below your name (a little to the right) you will see the download button.
  3. Just an FYI on 23andme - they don't analyze your entire genetic code, but specific parts of it, including MTHFR. Here's their explanation: https://www.23andme.com/more/genotyping/ Hope this helps!
  4. My DS picked a spot completely bald on the back of his head. It was about 1.5 inches in diameter, and it took about a year to grow back in. I don't recall noticing anything different about his hair, like it coming out easier.
  5. In our experience, antibiotics only worked when we hit hard and heavy with high doses, but psychotrophics should be approached very conservatively!
  6. My heart goes out to you! My son has been in the hospital (not helpful at all), and just spent 13 weeks (July, August, Sept, and part of Oct) in a residential intensive services unit for observation and medication review. Surprisingly they had heard of PANDAS, but they only had a very basic awareness of what they considered a new "controversial" diagnosis. That wasn't very helpful. They insisted Prozac was worth a try for his OCD, which resulted in him going manic and running away. They even had to call Police and Search and Rescue, who eventually found him in a forested area beside a riv
  7. Wow, can I ever relate to your post! My DS10 also cycles, and on top of the cycling he has a brutal October flare every year. He was also a nightmare on Augmentin - so bad that he should have been hospitilized. We saw die off reactions with other abx, where he would get flu-like symptoms along with behaviour regression for a few days up to 2 weeks, followed by huge improvements. But his augmentin reaction was NOT a herx (IMO). It was all behavioural (mostly rage, aggression, and panic) with no relief for a month straight, and no later improvements. He had a similarly brutal reaction to B
  8. This might be a dumb question, but does anyone know to determine if there is a SUOX mutation from the 23andme data? I ran it through Genetic Genie and there is no mention of SUOX. When I did a search for SUOX on the 23andme raw data I get this : (oops, I tried to copy the result, but it came up a mess when I posted it here. It gives 3 SNPs and kiddo's genotypes.) Can I figure anything out from this raw data? I'm stumped. Here are PANDAS DS's mutations: Homozygous: COMT V158M COMT H62H Heterozygous: VDR Bsm VDR Taq MTRR H595Y MTRR K350A MTRR A664A BHMT-02 BHMT-04 BHMT-0
  9. My 3 boys took plaquenil for several months. Our LLMD said it was a cyst buster. When I googled that I found mixed opinions, so I'm not sure, but we decided to go ahead based on the anti-inflammatory properties anyway, since we were also dealing with PANDAS and severe joint pains with swelling. I do know that my oldest DS, the one with PANDAS, had a great improvement in phsycial and behavioural symptoms when we added plaquenil in. He had been on combo abx for months before we added it. I was very concerned about the retina side effect, but I've only heard of damage in longer term use, so
  10. I don't have an advice, just wanted to commiserate. DS had 2 short bouts with Trichotillomania. The second time he actually picked a bald patch in the back of his head while he was lying in bed. I was horrified. It took a year to grow back! I agree, this one for some reason is so disturbing. Sure he chews his nails so badly they are permanently damaged, but that bald spot was just so horrifying and such a constant and obvious reminder. Hopefully the mino and/or steroids will do the trick before it gets out of hand for your DS.
  11. I believe I had PANDAS (onset early teens). I ended up with a bipolar diagnosis. In my late teens I went on tetracycline for 2+ years for acne. My "bipolar disorder" disappeared while I was on abx. I struggled with moodiness and mild OCD after that for a few more years, but it was manageable without meds. By my early 20s it all just went away. I'm 35 now, and finally living life without looking over my shoulder wondering when and if "it" is coming back. So if I really did have PANDAS I suppose I outgrew it - not with puberty, but with adulthood.
  12. I was able to get disability benefits for my PANDAS DS. It doesn't replace MY missed income, but it helps a lot with medical expenses, travel, medications, supplements, etc. I'm in Canada, so I'm not sure if you have something similar in the U.S. Perhaps others can chime in on that.
  13. I want to chime in on the "bipolar" question. Warning, this is just my opinion. My DS10 is diagnosed with "mood disorder-NOS" which is a polite way to say he's bipolar, but too young to say so outright. I am really cynical about this and about the pysch profession in general. Psychiatry has distanced itself from medicine and I believe that is a tragedy. Pdocs look at a collection of symptoms, label it, and try to medicate the symptoms. There is no thought as to the underlying triggers, and the factors that actually CAUSED these symptoms. I wouldn't get too hung up on a psych label, unle
  14. I'm 35 with a 9 y/o PANDAS DS. I don't think it's an age thing.
  15. I'm interested in doing this 23andme testing too. I checked their website, but I don't see any place to order particular tests. Is this genetic mutation testing all part of the $99 kit?
  16. My DS raged non-stop the entire 30 days that he was on Augmentin. Total nightmare! I don't think it was a herx. He herxed badly on Rifampin, but it was flu-like along with psych and we pushed through it and he had a major breakthrough with huge reduction of symptoms after a couple of weeks. Augmentin was pure rage, no physical herxing, and no let-up at all. Check out this article, particularly the section on Clavulanic acid (Augmentin = amoxicillin + clavulanic acid). It talks about clavulanic acid increasing dopamine release, and possible effects on glutamate transmission. VERY interes
  17. I found the blog post timely and encouraging. Exactly what I needed to read just now. Thank you Laura!
  18. I take phosphatidyl choline (part of the B vitamin family) when I have racing thoughts. If you google choline and racing thoughts you'll find lots of stuff. It is also anti-inflammatory, which is a bonus. http://myfunhealthylife.hubpages.com/hub/Choline-for-a-Healthy-Brain
  19. I completely agree with your own thoughts that she should have a psych exam, and that you don't want her near a hospital. My thoughts - if possible pursue her PANDAS more aggressively and/or rule out other infections if you haven't already. Meanwhile a psych evaluation and GOOD psych help may go a long ways. Emphasis of course on GOOD. My DS9 started with suicidal talk when he was only 5!!! We were shocked, confused, and overwhelmed. He wasn't even old enough to understand death, but he knew he didn't want to be alive. He would say things like, "I'm going to stand in the highway unti
  20. I'm not sure what their current prices are, but a few years ago I spent $600 on the complete lyme panel for myself, and when it came back positive (CDC positive too) I took my whole family to a LLMD. The LLMD ordered the western blot IgM & IgG only for $200. They all came back positive. So I feel like the complete $600 test was overkill in my situation and I wasted some money.
  21. Interesting about the fright/stress trigger, and about the BBB. Like Sammy, our PANDAS journey began with moving. I've also wondered about lyme being another possible cause of a BBB breach. Since it has a corkscrew shape and can "drill" through tissue, I've wondered if it literally puts holes where they shouldn't be.
  22. Okay, I deleted a bunch of old stuff. I think my PM should work now!
  23. I think I can invite you to the FB group, but it would have to be approved by the admins. I would need your facebook contact to do this. I was going to say PM me if you want me to try this, but it sounds like PM might not be working. If we can get through on PM I would love to know the name of the EP in Toronto.
  24. Weird. I haven't used the PM since the changes on the forum, but I used it quite a bit before. Do I have to do something or set something to allow you to PM me? IDK?
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