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eljomom's Achievements

  1. Sounds like Dr. J might feel like he is not a lyme kid...just pandas? He is supposed to be the best pediatric lyme doctor, so I would think that if he isn't thinking it's lyme, then it's probably not???
  2. T.Anna- I am sorry for your frustration...I totally get it! I am wondering if you would mind sharing with me what brand home strep kit you ordered?? I have one that has never shown positive, yet kids have been positive at doctor. Also, it will go to positive if it sits too long......anyhow, I really need to order a new kit, as our insurance deductible is $6000 and I am paying over $100 each time I take one of my 4 kids in for strep tests!! Sorry to jump in on this post......I really do "get it" as we have had VERY similar situations. Thanks!
  3. I was told by 2 neurologists (Pandas-knowledgeable), and a doc at NIH, that tics are tics. They are caused by dopamine issues. What causes the dopamine signaling to be a mess is the issue....be it autoimmune/inflammation/neuro-imbalance due to "tourette's"---Cunningham test looks at anti-dopamine 1 and 2....Steroids have potential to makes tics worse be it pandas OR tourette's. Whether it will or not seems to be up to chance.
  4. My dd is a ticcer....we have not tried steroids due to the fact that they can make tics worse. This was told to us by 2 neurologists. I hear numerous reports here of them making tics BETTER, so hopefully you will seem them lesson as you taper. We were just to afraid to do anything to make them worse.
  5. I know they thought it was bacterial. I asked how she knew just by listening to lungs...she said viral is usually both lungs, while bacterial is usually one. She heard crackling in her left lung...loud and clear. But my pandas dd is the one with strep Hoping the biaxin works.
  6. Yah....she rx'd once per day ped today (different one) switched her to biaxin....thoughts????
  7. Thanks Karen! That makes me feel better. But she took 1 1/2 tsp. of Keflex....now is about on same dose of Omnicef....one time a day as well??? Maybe it's stronger so don't need a higher dose??? Oh jeeze...now I'm worrying:( So afraid she will tank again... I am opposed to Clindamycin. I know I see a lot of docs using it here, but I took it one time years ago and by the second day, my diarrhea was so bad I said I'd rather stay sick than stay on it. Also, my mom took it for a dental issue, and fought c-difficile for over a year from it!!! My oldest had c-diff as a 2 year old...not something I EVER want to deal with again.
  8. Hi everyone- I have not posted in quite a while, but do read posts and pray for you guys and your kids. My dd8 has Pandas (Pitand) and has for a few years. She is never 100%....always some variant of tics, but not always flare-like (not aways frequent and as numerous, OCD, sep anxiety, night terrors, adhd, etc..) So we have just kept her on a prophylactic antibiotic (Keflex) for the past year and a half. Last night she said her throat hurt a little, and she had a little fever (like 100-101). Not acting sick (which I notice she always seems more "normal" and pleasant WHILE she is sick with a fever.....it's the aftermath). One of her sisters has had croup for a few days, and spiked a fever last night. I don't take them in often, but did today. Older sister has pneumonia!!! DD8 has strep. Even while on Keflex. The doctor (didn't see our regular ped....this one didn't know much about treating...) said she wanted us to stop the Keflex for 10 days and do ammoxicillan. I said I thought amox wasn't great for strep, and she said we could try Omnicef (which is what she put my older dd on for the pnuemonia). I asked about Zithromax, but she said it's her "third line" treatment. Our regular doc (and Dr. L) don't like Zithromax at all for strep (we live in Virginia.....maybe resistant strep??). Just wondering if Omnicef is likely to work? It's a cephalosporin, just like Keflex, which she was on prophylactically, and still got strep. I sure hope so. Thanks
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