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Everything posted by P_Mom

  1. Abx., t/a removal, steroids twice for younger son (which were amazing) That is it. I'd give them a multi vitamin, fish oil and probiotics a few times a week too.
  2. HI! I have been gone from this forum for years, but, received an email notification that I was sent a pm! Imagine my surprise. So I browsed a bit and found this. I will just briefly say that I have (had ) two PANDAS boys. Onsets age 4 (severe) and 7 (mild/moderate). This happened after they both had strep in August 2007..... onsets were weeks apart. Our world was turned upside down....to put it lightly. Fast forward 7 years. Ages 11 and 14 now and BOTH sons are absolutely thriving......not even the most seasoned PANDAS parent would ever guess in a zillion years either of my sons eve
  3. Wow...IGM is also very negative. Only 41 showing which is very common in general population, largely due to "normal" oral flora. You have negative labs for Lyme...both IGG and IGM. This is not a test for Bart....was there other testing done?
  4. Trintiybella, That is a negative test result. Doesn't it say negative on the report? You are giving IGG results...there should be another one, an IGM one. But, anyway, the asteriks are marking the more Lyme "specific" bands, however some are not specific to Lyme, such as 41. The plus or minus next to the band is indicating if it was positive or negative. One plus is a low intensity result.....then it goes up from there.....2 pluses indicates a more intense response, and so on....it goes up to 4 pluses. You have two positive bands, low intensity...both non-specific for Lyme....that i
  5. Yes, it absolutely can be wrong. The test result reports themselves indicate that a chance of a false positive IGM result is high in individuals with symptoms lasting more than 4 weeks or so...(even IGENEX states that) IGM easily fluctuates between positive and negative due to cross-reactivity. Mine does that.....one month positice (IGM only by CDC)...the next negative...and so on...never positive IGG though. If you have been treating a positive IGM, and that is what you are referring to being positive and then negative, I would suggest seeking further opinions outside of LLMD's. A positive
  6. Well, I need Dr. L for the same type of care as you, nothing major, just abx and follow-up and to be there if things went south. I paid almost $1000 for initial visit (2 kids)...and follow-ups have been $500 and we go once a year. Hope that helps. (and remember this is for 2 kids...so divide it)
  7. Hi JPDad, This is the first one. I guess time will tell if it continues or not. I am not the organizer of the event....just the messenger. Too bad you can't make it...but, I will be sure to let you know if there is another one.
  8. Friday, Oct. 26 at 7:30 at the Panera Bread in Robinson. 295 Settlers Ridge, Groveton, Pa Hope to see those from the 'Burg there!
  9. Philly....do you or your husband get migranes or alot of headaches? My younger son gets them....myself or older son do not. Dr. L pushed on a part of my sons head in the back and made him cry in her office. It is always behind his eye or left forehead. She said one of the nerves is inflamed. Husband gets migranes a lot so she said it can be hereditary. He does not have them constantly though and advil does the trick when he does. I always thought it was because of his BAV, maybe, maybe not.
  10. Philly...but didn't he also test positive for strep? Anyway....my vote is no.
  11. UGH! I have a ticcer PANDAS son. (who had ADHD symptoms as well at initial onset) This makes me angry ....what is going to happen to the ticcer kids?? Ignored? Undiagnosed? Left to suffer? I also have a PANDAS son who presented with the works...OCD, tics, anxiety, hallucination, etc. If it weren't for his presentation, my olders son may have likely never received proper diagnosis and treatment. Both presented 2 weeks apart from same strep infection. Neurologists at CHP told me they were on path of Tourettes and come back in 4 months and we can medicate. Hummmm..BOTH boys suddenly dev
  12. Both my sons had titers for Pertussis run...they certaintly do exist! I would find a different doc.
  13. That is exactly what I think too, LLM.
  14. If someone has an active strep infection, or even a treated infection but still has elevated antibodies, and then donates for IVIG, could the donor antibodies in the IVIG be enough to cause a flair in a PANDAS child? Or, would it be so diluted and overcome by healthy antibodies that it wouldn't make a difference?
  15. I read it. I tend to believe it was PANDAS....sudden onset..woke up shaking his head one day/ocd. Tried all meds, everything and nothing worked. I do not recall a mention of it thought. The great part is it that it spontaneously resolved one day! (I think he was around 17)
  16. Well, I can say with pretty good certaintly that IVIG is not "the magic bullet that will fix everything." If it were, all of our kids would be well. IVIG is a miracle for some, helps others, and doesn't do a thing for some. There is no way to tell beforehand. I would weigh my childs state of functioning and if it is just bad, and I had given the other treatments a fair shake, I am sure I would give it a try.....knowing that I may come out with no improvement for my child. But I would be hopeful. I was in that place of what to do at one point with my younger son....I understand it is a di
  17. That is the thing. Some articles state .5 as protective...others go all the way up to 2.0 If you research it, you will find they really don't know. Many kids, for whatever reason, just don't "take" to the vaccine well. Failure of the vaccine or the child? I don't think they know that either. I just recently read an article stating how children generally have low titers to this and as they age...their numbers significantly increase. it can just be a matter of time or immune maturity. Remember, this vaccine did not exist when we were kids....just came about in the late 1990's...I think a
  18. Our daughter is currently being treated with azithromycin. She has been on a prophylactic dose every M/W/F during the school year for the last couple of years. We noticed a return of mild symptoms this spring and had titers run again. Her mycoplasma titer should be between 0 and 99. It was 727. Therefore, she is being treated for a chronic mycoplasma infection which requires, in her case, azithromycin daily for 60 days. Azithromycin can be a drug used for our PANDAS kids. There are quite a few PANDAS kids in our support group who are on a prophylactic dose of azith. I'm hoping that it
  19. I am confused as to why this is not posted under the Lyme forum? Zith is generally used at much higher doses for treating Lyme. Nothing new http://www.qtdrugs.org/ Even Pepcid and Benedryl have this risk. It is a commonly recognized risk that has been around a long time and is associated with MANY meds.....I think it may just be new to zith. I wouldn't stop the med or get overly concerned. If you want to be sure everything is okay....ask for a simple EKG.
  20. Yes! We took younger sons tonsils and adenoids out strictly for PANDAS/strep reduction. This was last year....4 years after PANDAS onset. By then, he had no signs of strep, hadn't had strep in years, and titers were well in normal range. The ENT said, on office examination, that his tonsils "looked good." Small, not infected, no recurrent strep....no real basis for the removal but he did it for us anyway based on what I told him. (great doc ) Much to our surprise, after removal, doc came in to recovery room and told us his tonsils were "very infected with pus in areas." I had to pick
  21. EAMom... Both my boys got Pertussis a few summers back despite being fully vaxed. So, in my opinion, what is the point of the vaccine? A few docs seem to think the vaccine is not so great....proved to be the case for my boys. One son did not flair from the illness, the other started to, but, I quickly dosed a steroid burst because it started with the potential to be a decent flair. With the combo of zith and steroids, the flair was stopped in its tracks and the illness ran its course with no incident in either child. Not worth the risk....vaccinating. (just my opinion) They both did
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