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  1. I've been conversing with a few other families off-line over the last couple of months as we prepared our DS for the transition from high school to college, and I thought I'd drop a note here in the event some others are staring down the barrel of college decision-making. I also wanted to make sure and thank a few of you who tread this ground before us -- most especially Emmalily -- and gave us some great advice! Thanks! So, for quick background, DS was likely "a PANDA" by the age of 3, but we didn't know, nor did we get any help with medical interventions, until he was 12 -- almost 13 -
  2. I don’t post very much because when my twins are home from pre-school the minute I open the iPads they both grab one & jump on ABC Mouse. Background: my son is 3.5 years old he has had PDD-NOS since he was 18months maybe longer. He has a twin brother & they were initially both verbal at 16 months then one progressed verbally & social and the other had terrible diarrhea & stomach problems for many months & he then did not progress, he actually regressed for a year. I see a DAN that was in California but is now in Florida & my son is on Methyl B-12 injections, DMG, Dig
  3. Hi there everyone! I'm so happy to have found this forum. I have an 8 year old son who has had tics on and off since about 3 years old. He doesn't fit into the Tourette's diagnosis and I was always told by his Drs. that he'd grow out of his tics, but they're still here! He's had strep a few times and I'm taking him to the dr. soon to talk more about PANDAS. My question is: He has taken antibiotics a couple of times since the tics started, could it still be PANDAS? I don't know if some antibiotics only target certain areas or if any antibiotics that he's taken should have wiped out th
  4. Hi, I am new here. We think my 8 year old son has had PANDAS/PANS for 5 years. I found out about PANDAS/PANS a year ago but was talked out of it by providers until earlier this summer when he flared again. He is finally being treated at MGH. So my question is what to expect now. So far this summer, he has been on amoxicillin (1.5 weeks, no effect and came down with bronchitis), ceftin (1 week no effect), ceflex (15 days no effect), and augmentin for the past 4-5 weeks (some improvement at first especially with appetite, but not sure). Because we wanted to do everything we could to improve thi
  5. Hi. I was told to post here, so I thought it would be best to just repost what I did in the tic/Tourettes forum. Hope that's okay: Posted Yesterday, 08:48 PM First, I want to thank Sheila and the staff for their amazing web site/forums and incredibly helpful book. I am so glad I found these amazing resources!! Please excuse the long post, but it's been a long story.... But it is: My 8 y.o. son started ticcing when he was 4--mildly, no one really noticed but me. Then, they went away within month or two. When he was 6, they came back. He started ticcing more regularly but still
  6. Last year I attended a conference at Brown on PANDAS. An IVIG study done at NIMH was presented and I am curious if anyone has seen any published information on this study. The results presented were not convincing that IVIG was effective in treating PANDAS. Many families are still paying large amounts of money for IVIG and fighting insurance companies. I'd love more information should anyone have found further information connected to this study.I do have the powerpoint but it is too large to attach. I am happy to share it through email.
  7. My daughter was diagnosed with pandas three years ago after a sudden onset of crippling OCD intrusive thoughts. She had previously had episodic stretches of eye blinking tic, urinary frequency, generalized anxiety, and some OCD tendencies but the thoughts knocked everything out of the ballpark. They came on fast and took over. AFter 5 or 6 months of we found a pans doc who put found that she'd had mono and probable Lyme (equivocal ELISA test but negative WB) and put her on ABX for many months. The thoughts disappeared and we had our daughter back - quicky but totally free of horrible obsesive
  8. My 11 y/o son is homozygous for COMT V158M and H62H, MAO-A and MTRR. He is heterozygous for MTHFR C677T, A1298C, AHCY-01, 19 and CBS C699T/A360A. He is having tons of problems with depression, mood, anxiety, etc. He refused to go to school 4 days last week. He also has Lyme and Pandas. We are working with a functional medicine dr and put him on Prozac last week but now I'm reading that an SSRI with his COMT mutations may not be the right way to go….that maybe an SNRI is a better option. After 3 days on the Prozac he seems more irritable than before. Can anyone help?
  9. Hi All, I'm a newbie here as my physician only recently suspected PANDAS for my son. We've worked so hard over the years to get his gut healthy, but after one week of oral antibiotics I can see he is a positive responder. His negative thoughts are under much better control. Still, I worry about his gut health if we stay the course with antibiotics over a longer term. Has anyone tried IV antibiotics and high doses of probiotics as an alternative? Thanks!
  10. Somebody here made this test and willing to share it over here? (if that is too long for you, then at least post your arabinose results which is elevated with people with autism or similar problems, autism can be also aspergers such as high functioning autism which doesn't seem to be autistic on the outside) also write your background story of problems you have, anxiety, sleep disorders, aspergers, autism, pandas syndrome, etc.. here are my results: http://imgur.com/a/PnJil My problems: Severe social anxiety, schizoid personality disorder or aspergers (socially disabled - can't t
  11. Hello. I am new here. But I really need someone's advice. My daughter is 10 years old. 3 years ago my daughter started having OCD symptoms, she was washing hands a lot, and was worrying about a lot of things, she was tested positive for strep, after antibiotics she got better. Pediatrician thought she probably has Pandas. Now, about 5-6 weeks my daughter started to have anxieties at evening before she would fall asleep. She was saying that she worrying about something and she doesn't know why. Later she started having sexual thoughts about everyone she knows. (She doesn't know what se
  12. Thank you so much to everyone who participates in these forums. I have already found so much comfort and support in reading your words over the past year when our son started having vocal tics out of the blue. I am sharing our story for the first time now because of some recent developments that are causing us great concern. I have tried to provide as much information as possible and apologize for the very long post. I am posting this in the PANDAS forum but am not sure if the Tourette forum fits our son's profile better. Mid-February (2015): Our just-turned-four year old son, “A,” start
  13. Hello, my 8 year old son, mild/controlled pandas for 4 years, on August 6th had 3 pins (like nails) were yanked out of his healing humerus (had broken upper arm bone 3 weeks prior from monkey bars fall) by ped orthopedic surgeon. He was sedated with nitrous oxide and versed. He takes prophylactic augmentin daily and a weekly Zithromax dose for pandas. The next day he began a new and severe flare with food refusal. Working with dr. T. Many labs drawn, changed to cefdinir and Zithromax daily, no help. Now will try valtrex and biaxin. Forcing son to eat/drink, he lost 5 pounds, now 70 pds.
  14. Hello, There is an article in the Fall 2015 issue of the trade magazine "Biosupply Trends" that summarizes PANDAS/PANS/CANS and provides highlights of some small studies that looked at efficacy of tonsil/adenoid removal versus antibiotic treatment. Interesting. Jump to page 48. http://www.bstquarterly.com/emagazine/currentissue/
  15. Does anyone know of a medical center that has all of the specialists needed to treat PANDAS / PANS under one roof? Thanks
  16. 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
  17. Hello, I am very new to the group, my 15 yr. old daughter has been newly diagnosed with PANS after doing the Cunningham Panel along with clinical symptoms. I will share her story another time but I need advice from others; She has been experiencing symptoms for nearly 3 years. I recently found a neurologist that took her symptoms serioiusly and after doing the cunningham panel she immediately started her on Azithromycin 500mg. 1 time per day. A few hours before she started the antibiotic she started to not feel well after starting the antibiotic now 10 days she has progressively gotten wor
  18. Hi our daughter recently had a sudden onset of TIC and OCD behavior. The neurologist would only acknowledge PANDAS/PANS as "theory". All tests for strep at this point are negative. She previously has had strep and her private school routinely had a strep outbreak every few months to the extent school notices went out to alert parents of the symptoms. In researching this, I did find reference to other viruses that have been connected as a trigger for PANDAS however that was only one research institution studying PANDAS. Has anyone familiar with PANDAS found any other triggers, infet
  19. Hello- just reposting. We are trying to get with Dr. L - but given her schedule - do you know of any other neurologist in the East Coast? Happy to travel, if needed. We are trying to get to an IVIG prescription - think its time! Anyone have any good suggestions. Thank you for your help.
  20. Hi, My son who is 3 year 2 months had a positive strep yesterday with absolutely no symptoms. He has been diagnosed with Autism recently, has excessive running and other ADD issues, has shown some regression. One thing I remember, early on when we were concerned he developed vocal tics suddenly, this coincided with him going to a different class, so we were could be stress induced autuistic reaction. His behaviours did seem to come on suddenly, I remember telling a psychologist like some body turned on a switch, he had some behaviours like hyperactivity. But we have lost our kid complete
  21. Hi, Does anyone know if its OK to give the Pneumovax vaccine? Both LLMD and immunologist wants my DS (24) to get this. LLMD because wants him to be protected and immunologist because we're looking into IVIG and wants to see if he responds to this.This immunologist does know about PANDAS, heard she is very well versed in it which is why we went to her. Right now he qualify's for IVIG because of his numbers. Saw neurologist last year who also wanted to do IVIG and didn't mention this, was just going to do IVIG but we weren't convinced then or ready to do it. Running out of option
  22. We finally saw a top neurologist yesterday. He said my ds did not have PANDAS because his dnase titers where not high enough. I KNOW from everything I have read that he can still have PANDAS without elevated titers. My son has every PANDAS symptom except OCD and urinary issues. The doc did confirm he has chorea so I think he fits the PANDAS criteria. It is my understanding that he has to have OCD and or tics/choreiform movements plus some of the other long list of symptoms, but I have not read about any other patients who do not have OCD. Are there any of you out there? My ds does
  23. My 14 year son had his first PANDAS symptoms March 7th. He was put on a 14 day course of Augmentin. He improved significantly. Within 48 hours of stopping the antibiotics his symptoms came back. It took me 5 days to get his pediatrician to give him more Augmentin. She gave him 30 day Rx - 875 mg 2x a day. Can anyone help me with next step after that? Is 30 more days long enough? Should it be longer or should he go on a smaller dose for a while afterwards? I really need help with antibiotic doses and treatment guidelines. I am in Seattle and there are very few doctors who treat PAND
  24. Has anyone dealt with burping, swallowing problems, reflux, spasms, etc.? What was the cause, and did resolving it reduce PANS symptoms? Thanks!
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