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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 gentlemen?) reminded me that there is supportive literature to incriminate other infections, not just strep). I really still can't wrap my head around that, but I'm trying to just let it sink in. So...he finishes the abx and then 7 days later wakes up at 2:45 a.m. throwing up and HORRIBLE diarrhea (sorry TMI)....it was just terrible, can't describe it. WAY worse than any stomach virus my children have had in any recent memory. By 7:30 a.m. I was at his dr.'s office (they do iv's, but that is ANOTHER LOOOOOONG story for another post)....and he began throwing up blood. ALOT of blood. We went directly to Children's Healthcare of Atlanta and he was admitted, they tested him for a few specifics (rotavirus, salmonella, etc.) but those came back negative....docs said "we can't check for EVERY virus...." - and I guess I couldn't argue with that - or could I? I was too exhausted to argue. So he was admitted and was there for 4 days!!! *I promise I'm getting to a point!* LOL He has been out of the hospital since the 21st, and his sinus infection is back with a vengence.....and I don't see HOW he could take abx on his stomach! And the ENT agrees and suggests I come in to them for a swab, and make an appt with a pediatric infectious disease specialist for the end of next week. They told me that for kids that can't take an abx - they suggest a pic line!!! OMGoodness - this just seems like this merry go round is spinning way to fast....really? Has it come to this? Do any of you have anything to offer here? Ideas? Has this happened to you? What in the world would we do with no abx for him IF in fact he does have PANDAS (haven't been down this road long enough yet to be able to say for certain)? I need shoulders to cry on and people who can think straight to weigh in here....HELP!
  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 is NOT familiar with PANDAS but receptive to the idea) has had NOT problem with having our ds on abx for extended periods to make sure all the infection was gone (and that was before he ever even HEARD of PANDAS). Egads. Thanks in advance, GH
  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 choice to not think about it at all or I think I would have slipped into despair. I am having to try and be soooo careful to not fall into a weird thinking that I WANT this to be PANDAS - but part of me does. It would fit. Make sense. Be a reason. Now I know that doesn't mean it's easy - I know it's not. But somehow KNOWING would help and I just want there to be a REASON for all this odd behavioir. I'm sure that is not coming off exactly how I mean it and hope I'm not offending... Now, I know that someone (or someones) on here has indicated that there are new thoughts on this that it isn't JUST Strep that exacerbates the symptoms. And off the bat - I tend to think that makes TOTAL sense. But again, I want to make sure it doesn't make sense because I WANT it to. Is there any literature that anyone can point me to that indicates that this is a new "hypothesis"? It's hard enough dealing with Dr.'s that either don't believe and/or think it's over diagnosed...now to have to share with them that it's NOT "just" strep - when all the literature points in that direction? I'm exhausted just thinking about it....Somebody PLEASE help. And while I'm on thsi subject....as I read some of the other posts and see what others with FAR more extreme cases then ours are going through - my mind also wants to play a trick on me that that must mean MY child can't have it. BEcause I GUESS if I could "label" his degree of PANDAS (if indeed it is PANDAS)...I would have to classify it as moderate (from mild, moderate, severe). And at the low/medium end of the "moderate". So how do I process that thought? Thanks in advance....GH
  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 went on to describe that it made him sick because she had nasty, green "boogies" under her nose (his OCD is germ based/hand washing). He just could NOT stop that image from coming to him. But after he told me that, he continued to "imagine" that he was kissing everything/everybody around him (kids, adults, trees, you name it) - even inanimate objects. And every time the thought would pop in his head he would "confess" it tearfully. My attempts to allay his worries by telling him it is all normal and natural and that I had had a crush on a boy when I was in 1st grade, didn't seem to stop that unavoidable obsessional thought. In an attempt to "play it down" I told him he has a wonderful imagination and not to let it worry him....so now he says "my imagination is thinking (fill in the blank)". But it's so sad because he seems tormented more or less. This SEEMS to have slowed a bit in the last 2 days - but I'm knocking on wood as I say that. He has been on abx for about a week now....hmmmm.... Is obsessional thinking part of PANDAS for some? The majority? Am I grasping at straws here? Anythink you can offer would be great.
  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 anything. It's that "balance" I'm sure we are all always seeking....but here is my point... The only thing he does that I think would fall under the category of a "tic" is when he flips his hand. The best way to describe it is he flips is very fast as if trying to flick off a booger (yes, I know that's gross! but the best explanation! LOL). I believe it is always restricted to his right hand only....and this behavior waxes and wanes. He has not done that, now, in several weeks. Partly due to the fact that "confessing" everything has become his primary symptom. But when I took him to the dr and described the hand flick - she immediately referred to it as a "tic" - and I guess just having someone else recognize it as such kind of took me aback (a moment of reality). Would the hand flick alone be considered "TS"...I would think that would be part of a bigger picture. GH
  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 share with them? You know, if you took just ONE print out or document or journal - what would it be? I am going to email my 7 yo ds's ENT some ifno about it since he was so receptive (or do you think that it might be pushing it since he is already receptive to the idea)....and wanted to share some valuable info. My first thoughts - a link to the NIMH website's latest info on PANDAS.
  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. So....I described it to him, essentially sounding off my rocker...BUT (drumroll) he did not seem phased one bit. Said why would he think that was crazy - when look how many illnesses we know are caused by viruses and bacteria (even gave an example or two). He said we would talk more when the results came back and prescribed him antibiotics. Something odd happened though....the pharmacy called me and said the strength was very unusual and were calling the doc. I didn't think at the time anything about it - just thought it was a boo boo. But, maybe he did it on purpose. I don't know...but when the pharmacy called him, he changed it. Omnicef. After the test comes back I'll contact the neuro and I expect she will change or up the dose significantly. So....what have I not thought of? What am I forgetting? Could I REALLY have gotten this lucky and hit the jackpot with these docs? I'm afraid to ask in a way after reading such stories.... Thoughts? GH
  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 out that I had been told otherwise by his ENT...and she recanted her statement a bit. Any advice on how to broach that one with docs? Also...anyone here whose child also had them removed and continue to have strep infections and PANDAS? Anyone else here have their child tested for strep by swabbing the sinuses? Or any other swab and/or test other than blood tests? Thanks! G
  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 been presented with that concern by a physician? G
  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, could be strep). He had pink eye week before last and I treated it at home with leftover prescription eyedrops for a few days and it went away - and foolishly I stopped the treatment and "it" is back. Now I want you all to know that if this were an oral antibx I would NEVER have treated my son myself (and we always finish our antibx so I would not have had any left anyway). I just felt that perhaps it wasn't as bad since it is an eyedrop...but perhaps I was wrong. Jackson's syptoms, right now, seem to be mostly hyperactivity (more than usual, and he has NOT been dx with ADHD) and obsessing (he basically can't turn off his "imagination" and comes up with some pretty out there stuff) about things. His hand washing is relatively under control at the moment. And one more VERY important question. I do not know if the ENT he is seeing tomorrow is a "friendly" (PANDAS believer), but when you go and aren't sure....is there one specific article that you take with you to explain it in a more "formal" and "official" way....so s/he doesn't think you are making it up if they haven't heard of it? : ) Thanks!
  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 p her off so I just let it go (for now). So I asked her what do I do the next time my son exhibits these behaviors? She said take him to his ENT, have his cultured, and if the symptoms correlate - call her and she will treat with an extended round of antibx. But help me ladies....doesn't that seem too simplistic? Based on what I have read....IF he DOES indeed have PANDAS...it would likely be considered mild-moderate (nothing like Sammy's story)....but it is still affecting his life significantly! She does NOT, by the way, believe in the IVIG treatment or steroid treatments, etc. Hmmmmm? My next question is.....is PANDAS only affected by THROAT strep? Or can it be any strep? Meaning - my son has had strep in his sinuses on multiple occasions....but did not have it in his throat. Wouldn't this still cause the same PANDAS symptoms? I would have to think so....Thoughts? Also, what about kids who always have some degree/level of OCD/anxiety....are they going to be looked over about the possibility of PANDAS because they already exhibited symptoms anyway? Hope that makes sense.... I guess I'm thinking...what IF my son has straight-up OCD (he has not been diagnosed)? I know for a fact that when he is sick - those symptoms go off the chart...but are always there to some degree, just more manageable when he isn't sick..... My son has started to obsess about things......to the point of tears and stomach upset? His obsessional thinking is just awful....like he constantly confesses stuff to me - as if what he is telling me he did/thought was/is wrong....and I'll reassure him and tell him "it's ok, that is NORMAL, do not feel bad..." but he just keeps it up. He basically can't stop his racing thoughts at times. I thought I was going to lose my mind this morning as we were on our way home to do Friday work (he schools at home on Fridays, which is how his private school is set up). Redirecting him to other thoughts does not help.... Thanks for listening....and I will be so happy to check back later and see what you all had to offer about the dr.'s stance AND strep/sinuses. Many thanks...G
  15. My apologies for the accidental double posting...moderators please feel free to merge the two and close one. Oops!
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