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MakeMineTea

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  1. Hi all. I was looking for posts discussing the pros and cons of the flu shots for kids with PANDAS. My son (7 1/2) has NOT been officially dx, but I feel in my gut that is where we are heading...each time I try to search for it - it just says my search criteria words are not long enough...hmmmm. Anyway - can someone share with me about that or point me in the way of a few threads? Many thanks....MMT
  2. He is petrified of the needles....but that's not why the possible pic line. The doc is concerned that putting very strong abx in his stomach after a brief stint with this unknown virus that was so bad he vomited blood (and I don't mean a little), that we are setting him up for worse stomach troubles. Plus...if he has been unable to get well from the prior abx with his sinus inf....possibly we need to look into other options. I wonder, at the end of the day, if having the pic line of abx might be better in terms of helping the PANDAS anyway...hmmm...
  3. I hadn't been posting long....and then fell off the map a few weeks ago. As a very brief reminder...I am in the Atlanta aread and had found an ENT who is open to the idea of PANDAS, and a neuro who will treat it if I say his symptoms correlate with his infections. So far, so good. Jackson had a sinus infection (think that is the last I posted) and was on a 14 (or was it 20) day course of abx (Omnicef I think) for staph infection that was determined from a positive nose culture. To be honest, I was DEVASTATED that the culture didn't return as strep....and a few of you great ladies (and
  4. When I spoke with the docs office earlier - the nurse said his test came back positive for staph, not strep (see other post) and that the swab let them know they already had him on the right abx - because it indicates WHICH abx our ds is CURRENTLY resistant to (this changes over time they said). WHAT???? I didn't know they could tell that from a swab? REally? Have you ever heard of that? Wow! Also...with this being Staph....his 10 days is over tomorrow...would you call and BEG the doc into AT LEAST writing the abx for another 10 days at least? Hmmmmmm..... In the past - the doc (who
  5. Hi everyone.... First off - I feel like such a "taker" on here right now....constantly coming here for help but not having much if anything to offer. I'm not always like that hopefully I'll get around to having some pearls of wisdom of my own to offer some day - but right now, I just need to accept help! We had realllllly bet the farm that Jackson's sinus infection was going to come back Strep. Really, I would have bet money on it. And it would have made sense with the PANDAS. But I got the call today that it was Staph. And I was literally stunned. I had to consciously make the
  6. One of my 7 yo ds's issues (as of late) is obsessional thinking and confessing. On Sept 6, a few weeks into his sinus infection (and unfortunately it correlates with him starting a new school, so I'm not sure how much "normal" nerves played a part)he began to CONFESS obsessively to me. For some reason he remembered that a little girl "made" him kiss her in 1st grade (he is unfortunately VERY easily persuaded)....and when he told me about it (a few weeks ago, he is now in 2nd) he was bawling his eyes out. He said he felt he was going to throw up, he hurt all over just thinking about it...and
  7. Bearing in mind that whether my son has PANDAS or not (I believe he does) is still in the air....I was wondering if there is anything I should know about getting him the flu shot. Does it exacerbate symptoms? Help? What is the feeling here on that... The only think I know for sure is that in the past, his vaccines have seemed to ramp up some of his issues (particularly back when he would rage). Also...I do want to be careful to not start thinking he has everything I read about that is associated with PANDAS...but on the other hand, I don't want to bury my head in the sand and ignore an
  8. I absolutely agree! THANKS to our PANDAS "pioneers"! Only one of the 3 dr.'s I have been to (neuro, internist/pedia/double certified, ENT) had even heard of it - the neuro. Hrmmmph! You know...as I typed "lucky"....I, too, thought what a blessing it really is. I have a lot of battles right now before me on a lot of levels and I'm not sure I would have the strength to battle this one head on w/o this support and faith on my side. Another question for you all: If/when you are trying to inform/educate a physician about PANDAS....is there one single "go to" piece of info you sh
  9. So to catch you up....I took my 7 yo ds to his first neuro appt last week and that went better than I though! My first time of saying "i think my son might have this". She said "when he has strep again, call me, and if he is having symptoms - I'll treat it".....seemed too easy. Well, of course I KNEW something was brewing with him. Took him to the ENT today and sure enough - sinus infection. He immediately swabbed his nose to send it off (he always does this)....but then I had to broach the dreaded subject with the ENT (had no clue if he had even heard of it) - and naturally he had NOT
  10. I'm not advocating purchasing them and/or testing at home....but I did want to let you all know that rapid strep tests CAN be purchased (I think you have to get 24 at a time/costly) online. What do you all think of that? Would that be helpful? Are they that reliable anyway? G
  11. I hope you gals can bear with me on all these posts... My son had his tonsils removed in June of '09. He has not had strep throat since (that is why I'm asking questions about strep in the sinuses and strep in the eye (pink eye)....in other posts. Having said that...I'm wondering if any of you have any experience with this and if any doctors have used that as a "it can't be PANDAS" excuse? Though the neuro we saw last week does believe in and treat PANDAS...she tried to derail me a bit by stating that he "CAN'T" get strep w/o tolsils/adenoids...to which I had to remain calm and point
  12. I felt so inadequately prepared (understandably so) to reply to some of the things that the neuro said to me during our first meeting last week. I am SO happy that she is willing to treat if/when necessary, but still a lingering concern regarding something she said. She pointed out that whereas she belives in PANDAS and will treat PANDAS....she is worried that with so many children being treated for it...could the overuse (whether necessary or not) of antibx used to treat it contribute to antibx resistant superbugs? I suppose it's possible - but what is our option? Has anyone else here
  13. I didn't want this question to get lost in my other post where I was asking if PANDAS is ONLY brought on by strep of the THROAT. A few responded that it is likely that it can be exacerbated by strep in the sinues, etc. So, I'm guessing then that would be the case for strep in the eye (many times conjunctivitis, "pink eye" is due to strep) also? Anyone here with specific examples or KNOW of any studies/articles that substantiate this theory? We will be seeing his ENT tomorrow and I want him to do a nasal swab to check for strep....but I also think he has pink eye (which, again, coul
  14. Hi everyone! I took my son (7) to a pediatric neurologist (a PANDAS "friendly" - as she has treated children with PANDAS) this week - but kind of left with more ?'s than answers and my head was spinning. Her stance was this...she does NOT believe in doing the blood tests as she says "the results do not affect the treatment - if the strep tests come back positive, and the child exhibits the behavior, I treat it as PANDAS." In my head I was thinking "but WAIT....I've heard the tests are VERY helpful....blah blah blah". I knew she was at least receptive to treatment and I didn't want to
  15. My apologies for the accidental double posting...moderators please feel free to merge the two and close one. Oops!
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