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  1. Found great article with the help of many. Fluorescent immunohistochemistry demonstrated specific binding to large striatal neurons. Antistreptococcal serologies (both ASO and ant- DNAse also were significantly elevated in the subjects. MRI showed hyperintense lesions on unenhanced T2 scans. (T1 sequences were normal.)Eight of 10 children had lesions of basal ganglia,including caudate, putamen, and globus pallidus. Other deep gray structures, as well as supratentorial white matter, brainstem, cerebellum, and cord were involved in some cases (Dale et al., 2001). Although they were quite ill, 8 of the 10 children recovered completely – some after relapses – though one was left with chronic obsessive-compulsive symptoms. Infantile bilateral striatal necrosis, a disorder characterized by abnormal movements and basal ganglia abnormalities, has also been reported to occur subsequent to GAS infection (Dale et al., 2002). A positive outlook until we get more information confirmed. Source: intramural.nimh.nih.gov/pdn/pubs/pub-13.pdf
  2. Hello! I have to add that diet AND nutrition are key for our immune system. My sister who is over 40 has had PANS/PANDAS but never knew it. She lives a life of high fructose sodas, crackers (because she also has IBS) and very little sleep due to here OCD rituals around sleeping. Her mood swings lead to many people, including myself, to shun her because we thought the doctors/traditional meds should have sorted her out. And she just didn't care about herself. Yes, shame on me. I did not know any better at the time, but I could not handle to drama. Alas, fast forward 30 years, our DS14 started to have the same meltdowns with onset of puberty (we found out he has low D, zinc, B because of Pyrroles) which added to his decreased immunity to any bacteria, virus, or stress. He also has gene mutation for under myth-elation. So what does all of this mean? Found this site! Read through every post. Without a doctors visit, went to private Lab Corp. and order strep titer (my son or sister never has had strep throat). It came back off the charts. First clue confirmed. Found an on-line doctor, sent copy of lab work, with $80 had a script for Zithro. Only 7 days, but wow what a difference. He went back to the tics and meltdowns after the course finished. Second clue confirmed. Next step, started son on b6, D, and evening primrose oil while waiting for an appointment with a PANDAS doctor. Created an extremely healthy detox immune booster diet for him. (MY grandmother would be proud) Ordered a pyrroles test kit for $75. Confirmed, he has pyrroles disorder, too. I did not have money for the test or meds for my sister, but bought the vitamins and supplements for her. She previously had pancreatic disease (very painful) and has never drank alcohol. With just the supplements her symptoms are starting to wane. She does not have insurance, because she could not keep a job very long do to panic, anxiety, low stress tolerance, etc. At one point she was homeless. I am trying to get her to see someone for an antibiotic, but she is very untrusting of doctors now. My 2 cents: Any untreated, underlying vitamin or mineral or hormone deficiency adds to the susceptibility of the PANDAS/PANS (or any other chronic illness to include cancer). Every person's metabolic system is unique to them. Some people can't handle MSG or red food coloring or sugars. Our diet and immune health can change the outcome or at least aid in recovery.
  3. Thank you very much. First, as another post suggested I/Dr. Lewis tested him for Lyme. It was negative. If the lesion is simply scarring (or other and not cancerous) then I guess I have proof that he actually has/had/will have PANDAS/PANS. Sounds odd to say that, but may need to prove my case for future treatment from traditional local doctor when we are unable to travel to Columbus. I have to explain this to him, friends, family, doctors, social workers, future teachers (he is home schooled at the moment), coaches, and most importantly future partner (and their family). I am trying to make sense of it myself. If 50% have this residual lesion at exactly the basal ganglia, then future 'outlook' should be something predictable. If ever mainstream doctors needed MORE than just 'symptoms' this is it.
  4. What are the implications of a lesion on the basal ganglia? This is where I am starting from. What ARE the implications? If I found out anything, I will be sure to follow up (after we rule out TB or other). New to the forum. Sorry about the reply in the wrong place.
  5. Dr. Lewis Columbus, Ohio. Great mid-west Integrative pediatrician. A team player (with PC who doesn't believe in PANDAS) and a great communicator. Quick responses to emails and inquiries. 2 hour first appointment. Ordered labs same day. Easy patient portal on lab results. Sells supplements on sight. My DS14 couldn't handle capsule 'smell' and was given advice to put cinnamon in the bottles. http://www.integrativepediatricsofohio.com/
  6. First off, I don't want to frighten anyone. My DS14 had an MRI referral when a traditional doc didn't know what to do(except wanted to mask symptoms with meds)when I told her of his symptoms- ocd, depression, tics, loss of math skills, emotional upset, and on. In the meantime, found a fabulous doctor in Columbus, Dr. Lewis, and started treating his infection(s), plus adding supplements for under-methylation (gene mutation), low D, Pyrroles, etc. He has had great results so far. I still had the MRI scheduled (took 8 weeks)and thought what the heck, let's see what the MRI shows...a 7mm lesion on his basal ganglia. We are beside ourselves. There is little, if any, research about long term damage caused by PANDAS/PANS. Anyone have any similar findings? Know of any new research? We are taking this one day at a time. The Neurologist is stumped, his behavioral psych is stumped, his PC doc is clueless, and I am waiting patiently for follow-up with Dr. Lewis. BTW, thru all of this the Neurologist had his Q10 levels tested and they were low. Started on a chain store brand (not the most potent, but are quite expensive) and we have seen a 3 fold improvement in all symptoms. Of the 29 blood, gene, urine, and stool tests given by Dr. Lewis, Q10 was not one of them. I wall ask on next visit why not- maybe another factor-key in the PANDAS/PANS protocol....or may just be an increase in his immune system. To everyone who replied: Thank you so very much! Obviously, I haven't figured out to respond to individual posts. I WILL figure it out! In the mean time, I will look into all the great information and links suggested. I will also update with any new findings (positive or negative). Just know, without this website and your support my DS14 would be on multi anti-psychotic meds or institutionalized or worse- would have killed himself. Yes, it was that bad. Without the resources here, I would have never found out about PANDAS/PANS or Dr. Lewis (who was on the collective list). From August, when he couldn't make eye contact and needed a mouth guard to today, where he wants to paint his room and plan a vacation to Florida. There is hope and I thank this forum for that!
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