eljomom

ugh---just posted a long reply to you nicklemama, but in a nutshell i can relate to the joke being on me. I ran my first 3 kids to the doctor every fever, strep, ear infxn, and antibiotics so much they each developed an allergy to certain abx....then my 4th (panda-child), sick all the time too, abx a ton, then finally decided to let things run their course. so stopped taking to doctor---for a few years, only for well-checks. fevers, sore throats, etc....motrin and time...and she always got well......or so I thought. now this---i have so many regrets from this, and now I am living in fear of making another mistake and messing her up more. I have wondered the same. It is possible the Flu Mist was a red herring that just happened to be given when he was brewing strep or it made things worse than they might have been. I doubted myself many, many times while pursuing PANDAS for my DS7. It kept me from being more aggressive and letting it go on for so long. He's always been so healthy and rarely sick. However, looking at his sudden onset and symptoms, he was classic for PANDAS, if you can overlook the lack of confirmed strep. My friend's kids were/are sick all the time. Its always something....coughing, runny nose, fever, etc... My son would not get sick even w/ exposure to their sick kids. The jokes on me since he has turned out to be the "sickest" one of them all. Cindy

When I read her papers, this is what I gather from it....that it tests antibodies specific to strep. However, in speaking directly to Dr. Cunningham, she said other things can cause the CamK to be elevated, like lyme or other bacteria. This is confusing---so cam K can be elevated from lyme, etc., but cam k only responds to strep? I am reading and re-reading, and trying to understand this. So does CAm K NOT measure the antibodies then?? What measures the antibodies?? Where does PITAND fit into all of this? If my child is NOT a strep carrier, nor has recently had strep, nor did strep cause the major upheaval....thanks for any info.

This is my question---what do you do if virus/pitand is the issue??? Abx won't help in that case....then what???

I wonder why, then, all the studies seem to be aimed at PANDAS---the strep connection?? It seems like if you can't link symptoms to strep, you are sort of in the "hmmmm...." category. Also, to me, this explains why antibiotics are not helping my daughter at this point in the game. edit: and if this is the case, PITAND...what do you do???

This is likely NOT to treat strep. I believe whole-heartedly that there is NO lurking strep anywhere. She makes good pneumococcal titers, and Dr. T says that means she'd mount a response. No titers. She is PITANDS. So I truly believe this is a (futile?) attempt by Dr. Latimer to try to get something other than abx properties out of the zith, and maybe more of the anti-inflammatory benefits. This is for 1-2 months trial.

Link: http://www.drshrader.com/autoimmune_diseases.htm

My dd7 was on Augmentin for a month, now on Zithromax. Dose is 3 cc of 200/5 ml ( a little over 100 mg) a day. Not seeing any improvement. Again, we are hitting this fairly late in the pandas/pitands game, with symptoms likely first starting a few years ago with ocd/hyper....then explosion of tics and sep. anxiety this summer after fever, impetigo, etc....that was 6 months ago. Anyhow, just started abx treatment, but thinking we are likely free of bacteria,virus, etc. and also likely starting to late for abx to have a huge impact at this point. and now I'm just hoping that the abx will give some immuno-mod. or antiinflam. help. Wondering if this dose seems okay? She weighs about 45 pounds. Thanks

My link

Who is Dr. MDK??

Buster--one more--probably a "didn't we already cover that?" question, but when you say "who improve on antibiotics or other immuno-modulating therapies"-- are you talking about steroids, IVIG, PEX??? when you say "other immuno-modulating therapies?" As always, thanks Buster for all the information. I would like to respond to this quote because I feel it is necessary for parents to know that the kids do not, in order to be considered PANDAS/PITANDS, need to have OCD, etc. I understand there is much debate with the docs over this. However, there is much debate about the existance of PANDAS and we all know it exists. (regardless of what some docs may say)

Buster--we are the ocd, hyper, sep. anxiety that---followed by adding a coulple tics, to a sudden explosion of tics....but it's been 6 months since the explosion with no lessening of tics. Does this mean not likely pandas/pitands? because no lessening? or that perhaps whatever started it is still going wacky auto-immune wise? Her CamK was done over 3 months after it started, and it was 168. As always, thanks Buster for all the information. I would like to respond to this quote because I feel it is necessary for parents to know that the kids do not, in order to be considered PANDAS/PITANDS, need to have OCD, etc. I understand there is much debate with the docs over this. However, there is much debate about the existance of PANDAS and we all know it exists. (regardless of what some docs may say)

P.Mom---thank you for validating what we see!! I wish I'd had my daughter tested/treated when it all started (well, wish I'd known about pandas/pitands when it all started!) so maybe we could have seen the benefit from quick treatment. Who is your pandas doc again?? There is considerable debate from certain neurologists at Johns Hopkins (and somewhat at Yale) whether kids with tics must also have sudden onset and debilitating OCD to be considered part of the "syndrome". As always, thanks Buster for all the information. I would like to respond to this quote because I feel it is necessary for parents to know that the kids do not, in order to be considered PANDAS/PITANDS, need to have OCD, etc. I understand there is much debate with the docs over this. However, there is much debate about the existance of PANDAS and we all know it exists. (regardless of what some docs may say) As a Mom who witnessed it first hand...yes, you for sure can have a child who only presents with tics be part of the PANDAS/PITANDS syndrome. Both my sons presented after the same, documented strep infection.(both from zero to 10 in a day) Two very different presentations..younger with ocd, tics, anxiety etc....the older with just sudden onset multiple motor tics, no OCD. He was treated rapidly with antibiotics (within 3 days of onset)...and his tics went from 10 to zero (well, lets say 10 to 1) in 48 hrs. There is no doctor on the face of the planet that can tell me my ticcer PANDAS/PITANDS son is not such. I am sure you know...when you witness it first hand...there is no debate. Whay can't I work the "quote" thing right?

kimballot---tried to PM you but you are "full"

Thanks again for the info---I'm glad my questions aren't totally "off", and that others have had them too. I am not understanding what "complement" is? Also, as for allergy being autoimmune, would that also go for "sensitivities" (not IgE mediated, but IgG, etc.?)

Thanks Buster and kimballot for all the insight, and patient explanations. Of course, I now have some more questions:) Hope that's okay.... I thought the BBB didn't stay open for long periods of time---just during illness (fevers), extreme stress, etc. but then it closes back up. So if infection has been eradicated, I assume it is now closed again? I wonder if those of us who were clueless about PANDAS and did NOT treat strep over the years -- thus insult after insult--even after strep has cleared (my ped. says strep will clear on it's own, but abx shorten the duration and lessen possibility of RF), there has been cumulative damage? Or that the immune system is just out of whack? But then why would my dd have normal IgG, etc.? Also, my father in lawa had Rheumatic Fever as a child, which damaged his heart in the long term. He had a massive heart attack at 41, was then disabled, and had another, which killed him, at 44. So, I do wonder if, since this pandas is very similar in mechanism to RF (which causes long term damage), maybe we are just looking at irreparable damage to the basal ganglion, rather than the heart???? One more ? --- do abx and Motrin cross the BBB? Because isn't the inflammation across the BBB in the basal ganglion? If that's the case, and abx and motrin don't cross BBB, then are they really helping with inflammation in the b.g.????

I can't remember what article I saw it in, but think it was the one by Leckman, Murphy,etc about Beta-lactams and penicillin (ceftriaxone) being used for glutamate modulation? What class are all the above drugs in??

I just feel like trying all these abx--none of which seem to be helping, for a case that has been going on for likely a few years, with the really horrible tics starting this summer (not after strep) likely from a virus or staph, not strep....like maybe we're chasing down the wrong villian here in all this??? Maybe it's NOT the bacteria "lurking" anymore, but the autoimmune issue going on. Maybe with pandas, if you've eradicated the bacteria and still aren't improving, it's because the autoantibodies are attacking the basal ganglion (like our 4000 antiD1) that an antibiotic isn't going to touch. How do we get rid of those bad boys---which are across the blood brain barrier, if I understand correctly? I admit, I truly don't know much about autoimmune diseases, especially ones that only zero in on the brain, but I "thought" that they didn't just "right themselves" and go away with eradication of the disease that caused it???? I'm sort of thinking aloud, asking, anything here. Just very very confused, after having a very pandas-literate doc say that it's unlikely pandas if abx arent working. Maybe if it weren't "pandas" but pitand, we could say abx aren't really diagnostic like that. Ugh...sigh..

It's been a downer day for me. Put Christmas stuff away, and am faced with the reality of life again. Choosing what to do next for my daughter---pandas, rule out lyme, etc. In my reading, I am wondering if the LLMD's take seriously (and more importantly, test for to rule out) cross-reactivity that can cause false positives on Western Blots? From looking at some of the pandas posts with Lyme results, it seems sooooo many have 41+, 58+, 31+ . All of which I am now wondering if they are cross reactive with something that is making our kids have pandas symptoms, and maybe not really Lyme? Igenex ran the 30-31 epitope on IgG (which was 31-) and IgM (which was 31 ++). BOTH were negative, which he said meant that the 31++ was really negative, and that it likely was from cross-reacting with another bacteria or virus. So now, daughter's results are (only posting bands that weren't negative): IgM 41 IND (was + on Quest taken prior) 58 + 66 + 83-93 IND IgG 30 + 34 IND 41 ++ 58 + Finally, I would like any and all feedback (you can PM me if you'd rather)---positive or negative---about any of these docs for Lyme....do they check for all things that could cause positives other than Lyme? Maybe versed in autoimmune issues (pandas)...not over-the-top with herbals? Dr. Elizabeth Lucas Dr. Letitia Short Dr. Vinitsky Dr. Warren Levin Dr. Stewart (in Leesburg, VA) Dr. Beals Dr. Debbie McCabe Dr. Robert Duca (Dr. of Chiropractic) Thanks so much.

WE are looking at possibly doing a steroid taper for dd (just turned 7), who has done a month of augmentin and now about 2 1/2 weeks on zithromax, with not much help. Many, many tics that started in June after a high fever (not strep) followed by 3 months of exposure and 2 illnesses with staph impetigo. Also, more hyper, super strong sep. anxiety, and ocd more prevalent. Before that, a few tics this spring after walking pneumonia. Before that, ocd a couple years ago (still going on).....numerous respiratory illnesses, pneumonia, fevers, etc.....never took in for strep (my older 3 kids had it all the time). Anyhow, I worried about the taper---in light of what I read about steroids causing BOTH Th1 and Th2 (?) to be supressed, thus causing any underlying virus/bacteria to strengthen, etc. Plus, still not 100% sold it's not TS. Dr. Latimer says pandas. Dr. Leckman, just in an e-mail, said that since she's not improving on antibiotics, it's less likely to be pandas. That really struck me as odd, given so many of these kids get progressively worse, especially if treatment is delayed so long like it has been with us. Can you shed any light on this assumption? Also, any explanation why steroid taper would be good or bad idea, if abx aren't helping? One other thing---still not understanding, and is the fact that if PANDAS is autoimmune, how can it be stopped dead in its tracks for some people JUST with antibiotics??? Also, if this is a longer-term autoimmune issue, then is it simply ridding the child of the bacteria or virus that caused it, or do we now have to deal with a "garden-variety"--well, not really, more of a BBB autoimmune issue, more important than just giving abx?? Does this make sense? Thanks for any details. Brain is a-humming!

Buster, this is interesting, as i just read something (and even posted it) about how steroids can be detrimental because they do something to BOTH Th1 and Th2????? I think...... WE are looking at possibly doing a steroid taper for dd (just turned 7), who has done a month of augmentin and now about 2 1/2 weeks on zithromax, with not much help. Many, many tics that started in June after a high fever (not strep) followed by 3 months of exposure and 2 illnesses with staph impetigo. Before that, a few tics this spring after walking pneumonia. Before that, ocd a couple years ago (still going on).....numerous respiratory illnesses, pneumonia, fevers, etc.....never took in for strep (my older 3 kids had it all the time).

Just copying this from a Lyme forum I just poked around on---wonder if this might be what is happening when people try a steroid taper, and initially do better, then regress?? Thoughts? Oh, sorry for all the posts today---it's a Pandas-thinking-day. " The main thing always overlooked that is most important - corticosteroids release dormant viruses (we ALL have dormant viruses residing in our spine) especially if IV, trigger point injections or facet joint injections are done near the spine. Mine were in the shoulder blade area. Viruses released as well and spread everywhere in my body 4 in all, they can make pain much worse and mixed w/Ld a nightmare. We have all been exposed to viruses in our lifetime through saliva, contact with others infected or even airborne, for instance Chicken Pox reactivated can be something entirely different, shingles, shingles can be localized or systemic (internally and body wide) Mono from the Epstein Barr virus reactivated can cause pain and neuropathy just as an example. You have dormant viruses, it is fact. Once released they can be dangerous. If you have had corticosteroids at all, especially if you have pain that is not manageable, insist upon viral testing. Know how to read a viral report, if either the IgG or IgM show out range you ARE infected w/viruses, many doctor's only look at the IgM (meaning active - IgG meaning past exposure) and may be wrong. There is much argument in the medical community as to the meaning of IgG...IgM is clearly active, IgG positive tests, the line blurs as to whethr you are actively infected or not. "

I have thought about him---but just not sure he is versed in the neurological symptoms (tics/ocd) and the ability to really be able to separate out the difference in a situation where there are no positive titers (pitands), no benefit from antibiotics, etc. Anyone know?

Just wonder if this could be linked---my daughter hardly eats a bite of food since starting the zithromax 2 weeks ago. Started right away. She will say she's starving, but then hardly take a bite. any thoughts?

Just out of curiosity, if these docs are skilled in figuring out all these infections, etc. it seems they would be able to show (via MORE bloodwork---maybe immune stuff) that antibody response being weak would be plausible, versus just another reason the negative results weren't really negative? does this make sense? I don't mean to be such a devil's advocate, but I really, really just don't get the whole Lyme thing. I mean, people who don't live near ticks and never had a tick bite AND have negative Lyme tests are STILL being treated for Lyme. I spoke with a ped. infectious disease office today--just the office manager, but still....as die hard as LLMD's are about treating lYme, with numerous negative tests, the ID docs are just as die-hard about people being treated for lyme when they DON"T really have lyme. I know there's the whole insurance thing, etc. I get that, and the fear these docs have of getting in trouble for giving more than the standard dose of antibiotics. But even the guys who "know LYme"--and to be honest, i really believe that infectious disease docs do know Lyme (even though they are hogtied into following CDC guidelines)---they don't look at Igenex results for some reason. Maybe it's the "sensitivity" of the tests causing positive bands do to cross-reactivity. From what I keep seeing on people's results who are posting here is that most of us who are sitting on the fence, with negative Igenex testing, but still not sure, have VERY VERY similar results, with band 30, 41, and 58 showing up a bunch. Dr. Harris even said there is a cross-reactivity with many of these bands with viruses and other bacteria. I do still feel uneasy about just dropping it all at this point---still haven't tested co-infections, etc.

I just wish antibiotics were helping right now---if they were and I couldn't find a dr. to prescribe, I'd mail order them!!! But were just not seeing much from them. From any doc I've called, the front end always says "you can schedule an apt.---they wont talk with you without seeing your child"---and any i've actually found e-mails for just don't reply:( Keep me posted.