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nomoz

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  1. Thank you for your responses. I do have a phone consult with Dr. T this evening. The lyme really has thrown me for a loop, as I am getting literally different info from each doc about it. The info on the Cunningham test is helpful, as I was unaware of OCD/tic like behavior alone NOT having elevation in Cam Kinase levels. I will ask Dr. T if he feels any other docs (in the loop) can help further. He mentioned a Dr. Fallon, who is a lyme specialist. I tried and failed to get hold of him. We live in NE Pennsylvania, and I do often wonder if allergies play a significa
  2. Hello, all. I am continuing to see doctors to try and confirm PANDAS in my 8 year old daughter. So far, evidence of strep/mycoplasma/lyme have all been detected and biaxin has successfully alleviated symptoms (while on it). Currently, on no meds, rage symptoms along with strong verbal obsenities and ocd like symptoms are present. My daughter does attend school and does well in that environment, but getting her there is nothing short of an all out struggle. Dr. T (a neurologist in NJ affiliated with NIH) confirmed a lyme test last year, with IGM's 2 out of 3 bands present, and
  3. My daughter has terrible night fears and anxiety - instead of fearing the blanket, she puts her ENTIRE self underneath it, so nothing can get in! Hope things keep getting better for you!
  4. Is this your first time trying steroids? We just did 5 days of prednisone with my daughter a few months back - and it was not pretty - her rages became more apparent. I've heard this can happen the first time on steroids, and I've also heard sometimes it takes some time to see the effect of the steroid. (Don't know if these are TRUE statements, but I've been told...) I hope things get better for your family. Noelle
  5. Hi, Denise. Hope today is a better day for you. My heart goes out to you. The rages you are describing are IDENTICAL to my 8 year old's. Bone-chilling, isn't it? My daughter bites herself, me, her sister.. she pinches (to the point of bruising me), kicks, slams doors, throws phones, pulls towel racks out of walls.. threatens to kill all of us with a knife (never tried that just says it), hates God, you name it.. We have two dogs.. One of them is so scared, I'm afraid he may actually attack her - they really sense something very wrong is going on.. This can last anywhere from 5 m
  6. Thanks, everyone, for your much valued opinions. My heart goes out to all of you. I'm certainly not saying I wouldn't consider IVIG - my daughter has extreme rage issues when she is symptomatic - but I guess I was just really wondering if anyone saw a REALLY big change post IVIG, and it seems to be the case only some of the time. My daughter tested + for lyme last year, and three months after biaxin, tested -. She also had high mycoplasma levels during this period. She had already had her tonsils out at this time. But I remember well it to be one of her most serious exacerb
  7. My 8 year old daughter currently suffers from PANDAS symptoms. I am extremely hesitant to do anything other than periodic antibiotics and therapy. In doing research regarding IVIG and PEX, I am left to wonder the following - IF these children get better with age (I have an 18 year old niece with PANDAS, and anxiety seems to be her last big symptom - she is doing 100 times better now than in her pre-teen and early teen years), why chance these procedures? And is there anyone who has had 100% effectiveness - a total remission- from either IVIG or PEX? Or do the antibiotics need to co
  8. I read your post and replies with bone-chilling recognition. I have gone through many similar days, and am noticing that the rage episodes spike higher as my daughter gets older. She is now 8. We have done periods of antibiotics, relieving the rage symptom by about 80-90%. In the midst of an episode, as a Mom, I feel so helpless and vulnerable, watching this demon take over my child and my family. The level of stress and arguing in my household is so high, at times I feel like I just want to disappear!! I know your frustration. You are not alone. We all cry, we all lo
  9. Hi.. We just recently had the Cunningham test done as well. Our 8 year old came in at 170, with her anti dopamine levels at 4000 as well. If you look at those levels, you'll see that they are 4 times normal (I believe your results are the same here). This alone is proof that their behavior is related to chemical inbalance in their brain. Your results are positive, as far as I can see. To add to our frustration, once we gave these results to her pediatrician, she dismissed them (along with so much other "proof" we have here - lyme, mycomplasma, strep infections/tonsillectomy.
  10. Hi, everyone. Hope 2011 brings us all much needed relief! My daughter recently did a 5 day trial of steroids (first time trial) and her symptoms of rage seemed to almost worsen. I definitely did not see any signs of improvement. Over the past few months, we did the Cunningham test, resulting in a 170, with anti-dopamine levels at 4 times normal. There are several other indications over the years (along with symptoms peeking around several strep infectins pre-tonsillectomy, mycoplasma and lyme causing a peek in symptoms) to indicate that this is indeed a PANDAS/PITANDS case.
  11. I wonder if something like rifampin would help if given pre-dental work to clear surface bacteria. I never noticed my daughter reacting strange after a cleaning, but she did have an episode at the dentist's from anxiety alone!
  12. Now she developed a 102 fever. Poor kid. We did use this drug before, without harsh side effects. But, you never know.. I think, however, with a fever, a reaction to the drug is unlikely. Seems like she just has a bug. (Which may account for the recent rage epidodes!!) However, it makes me wonder what she picked up while on this. It has to be viral, I'm guessing.
  13. Hi, everyone. My 8 year old daughter started Biaxin last week. She's been on this before (for almost 3 months)at the beginning of the year, with a little stomach discomfort, some loose stools, but overall a good tolerance to it. Also, her PANDAS symptoms decreased significantly on it. She started it again just last week since her symptoms have again worstened, along with the re-appearance of the "classic" red circles under her eyes. She seemed to be doing better after a few days - Monday (almost a week after she started) and Tuesday were severely rough mornings. She made it to
  14. Hi, everyone. I have a few questions. My daughter's tonsils were taken out two years ago. However, when she is symptomatic (with PANDAS), her stomach continually bothers her (even if she is not on antibiotics) and she complains about her teeth. Also, she complains about her vision (she tested fine in school - not sure if that is a tic). I see that stomach problems surround strep in the gut, which can be hard to detect. My daughter tested positive for lyme this past year, and had mycoplasma right around that time. She has all the signs of a classic PANDAS case, her symptoms ran
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