eljomom

No, I'm in Virginia. I'm with you all....simple and easy would be nice. I would LOVE to see Dr. J. However, He is way to far for family of 5 to travel to get better multiple times a year. But the best LLMD is always worth it in the end. I personally went to the only 2 that are within a 2 state radius for me and I live in texas . There is no one here. But I wanted to see both to decide who was the best to treat my kids. They have already been through so much. I did not want to take them to some wierdo place in the middle of No where America. I was happy I did. And zeroed in on the one that works best for our family. I chose not to go the route of taking 20 different pills a day for my kids. We try to keep things simple antibiotics, probiotics, eat healthy and clean. So far it has worked. I'm sorry - my response was to eljomom. I think she lives near CT. I could be wrong -- terrible memory .

no...never even talked about ruling it out. I did mention my father-in-law. Wonder what symptoms are. I asked because you said symptoms developed after a fever. Did he at the same time have any joint/bone pain? Our son has had a similar pattern, been diagnosed with PANDAS, but the possibilty of rheumatic fever has been mentioned and he is going to see a cardiologist just to check out his heart. Did a doctor rule out rheumatic fever?

I'm on forum overload today, if you haven't noticed. So dd7 had a positive rapid about 4-5 weeks ago. Pandas doc and ped. said no need to test titers...they aren't really helpful, etc. ENT ran them anyway, which was about 3 weeks after positive rapid. Her ASO was "6." When we first tested her ASO back last fall, her ASO was....."6." EXACT same number, which I find just a little weird. DD has had pneumonia 4 times. The last time was in March 2010. She had had a cough and fever, seemed to get a little better (well, fever did), but then tanked again about a week later, with another high fever with the cough. Records say "myco p ?" I will have to look back and see if we x-rayed for that one. Nonetheless, she took abx and got better really quick. Maybe it wasn't mcyo p, but strep instead with the second fever? That's irrelevant. And maybe the other pneumonia's were viral (but I remember one of the docs saying the way the x-ray looked it was likely bacterial) or from something other than strep. Tested myco p IgG and IgM in November, and it was negative. To boot, dd's immune panel was "normal." How can this be? You don't mount an antibody response to strep (thus no titers)....doesn't this sound like some sort of immune issue in and of itself? Just curious...again...

we tested her myco p igg and igm (dr. t ordered it after a phone consult). both were negative. when i looked back at her records and saw all the pneumonia, then saw people posting about myco p... i thought we'd figured it out.

If only there was one nearby, who was middle of the road in diagnosing/treating Lyme. This is another area I am a bit skeptical of.

Just posted in Lyme forum, but thought since there are more people hanging out here who have pandas/lyme, I would post here too. Curious what Dr. B orders, and any other docs who are working on this. Have been waiting for pandas doc to send orders for Igenex testing for over a month. Now, it turns out, I will be filling out the form and sending to them, so doctor can check test boxes and sign, then send back. So I want to maybe attach a note, as I'm guessing dr. won't remember what we talked about ordering (i sure don't), and maybe I can ask for certain tests. DD7 was tested in November, and was "negative" on the basic lyme panel. But there were IND's on lyme specific bands, and some ='s too. Was told to leave it alone, it's negative. DD is still not well. STILL ticcing all the time, with periods of horrible ticcing, still some ocd, etc. I'm not sold on lyme, but before proceeding further with anything else immune-modulating, I want to try to rule it out. We have not yet tested for co-infections, and that bothers me. Now pandas doc says we should test co-infections, etc... So can anyone tell me which tests would be best to run (assuming I haven't robbed any banks lately)? Definitely want to rule out Bartonella, etc. Is it 5090 (Complete co-infection panel) or 5095 (NEW complete co-infection panel)? Also, she was on low doze zithromax for 8 months, then switched to Keflex for strep infection a little over a month ago...still on Keflex. Is it a problem to test for these while on anbibiotics? Is there any point in doing the 188,189 (IgG & IgM Western Blot) again? Her Igenex CD 57 was really high. Her IFA was equivocal (?) Thanks.

Wow--that sounds just like the Lyme symptoms list! Interesting. Is there anything they left off? I don't mean to sound sarcastic, but I just go back and forth on this one too..

Have been waiting for pandas doc to send orders for Igenex testing for over a month. Now, it turns out, I will be filling out the form and sending to them, so doctor can check test boxes and sign, then send back. DD7 was tested in November, and was "negative" on the basic lyme panel. But there were IND's on lyme specific bands, and some ='s too. Was told to leave it alone, it's negative. DD is still not well. STILL ticcing all the time, with periods of horrible ticcing, still some ocd, etc. I'm not sold on lyme, but before proceeding further with anything else immune-modulating, I want to try to rule it out. We have not yet tested for co-infections, and that bothers me. So can anyone tell me which tests would be best to run (assuming I haven't robbed any banks lately)? Definitely want to rule out Bartonella, etc. Is it 5090 (Complete co-infection panel) or 5095 (NEW complete co-infection panel)? Also, she was on low doze zithromax for 8 months, then switched to Keflex for strep infection a little over a month ago...still on Keflex. Is it a problem to test for these while on anbibiotics? Is there any point in doing the 188,189 (IgG & IgM Western Blot) again? Her Igenex CD 57 was really high. Her IFA was equivocal (?) Thanks.

thanks lynn...I trust tried-and-true anecdotal just fine!! Has anything helped him?

P.Mom---you are NOT hounding me. I appreciate your insight....always have! See, with my dd, I don't think the germ ocd ever went away. Then again, she was almost CONSTANTLY SICK from 3 years of age (interesting that her immune panel was normal....has had pneumonia 4 times too!). URI/ear infection/cough...pretty much monthly for years. So maybe never a shot to "heal" or "remit" once it started (the ocd). So when you say 2 years since onset, you mean onset, then remission of symptoms until explosion, right? So when it hit 2 years later, you got right on it, right? I'm talking NO REMITTANCE in over 3 years. Did you go see Dr. K? I thought I knew who your pandas doc was......

wickedmania....Nope. Curious why you ask? I have wondered that myself, especially since my father-in-law had it as a child, and died very young of a second heart attack.... Did a doctor rule out rheumatic fever?

P.Mom---thanks. Had your ticcers been ticcing for long when you tried the steroids? It does make me feel better hearing from a big ticcer who had steroids work. My brother has Tourette's (had chronic strep as a kid!!!), and father in law had rheumatic fever (died of second heart attack at 44), so something's predisposing my dd (well, a couple of my other kids too!). Who knows, my brother could have been pandas. But my mom swears his Tourette's was not like my dd's. The dramatic onset, and so many tics, etc. But I think that's why I do have TS on the back burner. He also has ocd. Tonsils out...I agree totally ---NOT off-the-wall, unless the child has no known strep infections (she wanted it done before dd's first strep we know of, a month ago ...and she didn't raise titers with it), not enlarged tonsils, etc. My ped. said NO ENT is going to pull tonsils in her situation unless they are working with a pandas doc, etc.. Can you tell me about short course of steroids not being less invasive than IVIG?

Not to belabor this whole steroids thing, but has anyone done steroids for a child (especially one with many tics in addition to some ocd), but after about 3 years of symptoms? Is it too late? Are steroids best only when caught in exacerbation early? From those who have been posting about the success of steroids, it seems like those who get them right away, pretty quickly after exacerbation, have success. Wondering if the ones who DON'T have success are the ones who waited years to get treatment? WE went about 2 years with some germ ocd---thinging dd was just a quirky pain in the patooty, to aabout 3 tics shortly after pneumonia (they weren't constant, and again, didn't alarm us, since many kids get transient tics....and NEVER knew about linking to illness), then the big explosion after the fever...head to toe tics, separation anxiety, more ocd, etc....but it has not stopped. It's been 14 months since then. So I do wonder if steroids would even help now?

All well-taken....I know from those posting to my topic, that your hearts are all in the right place. I can take it, and I appreciate it. Honestly, it's like a family in some ways here, and sometimes we don't see the forest through the trees until someone we car about points it out to us. I have thought of most of the things you all said....doing nothing gets us nowhere, etc.... We just DON'T have clear cut strep to be our "known trigger." My dd also tics mostly, and I'm not sure if kayanne, P.Mom or dcmom....if your kids tic ALOT?? But if I were only dealing with OCD I would have tried steroids by now. Dr. L only brought them up at the one appointment, and after I asked about Lyme, it hasn't come up since. She reads the notes. She knows what we have done/not done. She isn't shy about suggesting some off-the-wall treatment (like pulling tonsils of a kid with no known strep, no titers, small tonsils, etc.). In her mind, during the 2 minutes she sees my dd at appointments (we don't bring her back for the rehashing of it all), dd sits still, hardly speaking, moving, breathing, probably fearing the needle or swab coming out at any time. Dr. L sees that and says "she seems happy." So I think that is a HUGE part in whether a child is offered certain treatments. I truly think if steroids were the "preferred treatment" for pandas, NIH would be doing a research trial on just that....steroid tapers for pandas. It would be a heck of a lot cheaper and quicker. but they are not...they are trialing IVIG. And part of me thinks they are trialing IVIG b/c it is "less invasive" (ie., people are more likely to do something like IVIG,where they might go through the procedure and only get placebo, than PEX), and because it is "cheaper." But back to steroids and tics....steroids increase dopamine, dopamine increases tics. That is a known fact. Even the ENT at Georgetown we saw, when he mentioned that during surgery they give a bolus of steroid, and I mentioned my concern...he said "You know what, that is a really good point. I really need to rethink that for my pandas patients who tic. In fact, it's even been shown that steroids can cause psychosis in young children." I do appreciate everyone's input here, and am open to hearing any more from anyone who would like to send it.

So what is more of a possible "cure"? PeX or Ivig? OR none?

Thanks dcmom. Not harsh at all, and nothing you have said surprises me. I am tired of being the medical director. That's why I'm paying thousands of dollars to the pandas specialist. THAT is who is supposed to be directing . WE HAVE done everything she suggested. The augmentin for a month. The low dose zithromax. Ignore the tics. Go to infectious disease. No, we have not pulled tonsils. No we didn't do the steroid taper, because when she mentioned it, I asked if we should test for lyme first, and she said "yes." I'm SICK if having to think this hard. Just because antibiotics doesn't work, to me, that does NOT mean it's NOT pandas. If antibiotics worked for all pandas kids, then surely there would not be this forum. We would all be sailing away blissfully with our antibiotics. Nope, no titers. Nope, no cultured strep. Nope, didn't take her to the doctor for sick visits for over 2 years, during which time the germ ocd started, which I attributed to an annoying, quirky phase from a difficult, strong-willed child. The baby of 4. Who survives days of 104 fevers unscathed. Or so I thought. So sudden? Well, if your child used to eat anything given to them, and then one day the won't eat anything that anyone has touched or breathed near, is that sudden? If your child didn't have tics, then got 3 tics that could also have been attributed to "quirky stuff"---smelling fingers, rubbing hair and scrunching nose, is that sudden? If your child had a high fever for a day, then within a week, developed over a dozen tics, separation anxiety, over the course of a week or two, is that sudden enough? Nope, no titers. Is pandas just strep? Not from what I've read. I'm sorry if I sound harsh....I truly appreciate everyone's efforts to help. I am just not the type that thinks it's just no big deal to put a kid on steroids for a month. Not everyone has had the success you have had with steroids, in fact, from what I have read here, you are the minority. Maybe it's because this forum is filled with people who are really NOT having immediate success with treatment. I don't know. My husband sees her as happy, so he fight against any type of treatment anyways. He (and I) don't want to lose that....her happiness, by trying something that may make her worse. She is pretty happy now, but when the teasing starts, when she gets older, it won't be cute anymore.

Hmmm....just googled and immediately got many hits: "Another possible complication to coming off steroids is steroid withdrawal syndrome, or rebound effect, which is the body's exaggerated response to removal of the drug."

After hearing SO MANY people post that their child did wonderfully with steroid burst or taper, then shortly thereafter relapsed, and often with WORSE symptoms than at start point, I wonder if maybe there is a "rebound effect" taking place? Inflammation is temporarily forced with steroids, then when they are stopped, the body works hard again, causing inflammation to return, even worse? Anyone ever thought of this or asked a doctor?

Thanks PowWow. I agree....I have gotten some amazingly useful info. here, but I have also heard the horror stories, negative responses to steroids, ivig, etc., rabbit trails, and I sometimes wonder where we'd be if I hadn't heard that stuff, and had just bitten the bullet and done steroids almost a year ago. Maybe better. Maybe worse. Who knows. I guess for me, we are not a "clear cut" case, so I do have doubts about doing many of the big interventions. At the same time, doing nothing leaves us with strong Tourette's and some ocd. I suppose you are right about trusting the doc. I guess I truly have lost trust with our pandas doc. I don't believe there is any sort of plan, just stuff being thrown at us, and stuff that is 180 degrees different from another visit. I just truly don't know who I will trust. I pretty much know if I go see dr. K, we are going to be told we need ivig. period. dr. b will run a zillion tests, maybe try some abx combos, then will rx repeated ivig. we've been told not to pay attention to the tics as symptoms....they are the "last to go." Well, they are our MAIN symptoms. So in some way I feel like I've had my pandas holiday. We did low, non-treatment dose zithromax for 8 months. No change. I tried to convince myself that tics might go later. I have been sent to Inf. Disease. ENT for NO strep, and small tonsils. It is just frustrating and makes no sense. Trying to trust my doctor when the things we are told is tough. "Pandas kids don't have issues with yeast." "100 mg zith. should be enough." "Let go of the lyme issue......(another visit)....oh, she had some positive bands for lyme...why didn't we retest?" MUST remove tonsils. Hey, helllooooooooo....isn't it pretty common knowledge now that PANS is not just caused by strep. I am sorry to badmouth our doctor. I know this doctor has done amazing things for some people here, and that is awesome. We don't fit neatly in a "exacerbation from strep.....remission from abx.....exacerbation from strep....remission" package, so we're not getting help. So here is that tone I was talking about, yet I can't help myself right now. I'm just being mentally pounded that if we do nothing, we are left with tourette's and ocd. But we are not being offered anything but useless antibiotics for treatment. Once offered steroids, but declined. Have heard too many multiple times that steroids are just a VERY temporary fix, with symptoms coming back, sometimes worse. Wondering if it's a "rebound effect."

Not that my child is "debilitated" enough to be offered PEX, but just wondering, if PEX filters out the autoantibodies, isn't it filtering out ALL antibodies? What kind of immune system does that leave your child with? ARe all the antibodies they have to previous illnesses (the good ones) and immunizations filtered out too?

Maybe I don't even know what a 5 day burst is.....I thought that meant 5 days of steroids? Are steroids for pandas given in the same doses as, say, for severe poison ivy??

I want to apologize to the group, especially to people who are posting in order to find relief, compassion, hope, etc. I feel convicted that I need to apologize for the tone of my recent posts/replies to posts. I am in a bad place right now. A feeling of damned if I do, damned if I don't. A feeling of being alone in a battle field. Marriage is tanking because of pandas. Child is ticcing NONSTOP and it is breaking my heart to watch helplessly, as our only pandas doc has not helped us really. But I digress. I truly do apologize for just being plain old negative, grumpy, maybe even rude. I probably should have just kept my mouth shut and NOT responded at times. Please don't in any way take it personally. I would not be functioning today if I hadn't found this group. Thanks, and blessings, Wendy

Well, I suppose we have TS too....must be both?? Tics have not remitted even for a day, or an hour, in over 17 months I believe. Did the steroids help at all? I've heard mixed things about steroids with tics. Boy, your dad's an immunologist...how awesome! Well, he was diagnosed with TS after having tics for over a year, that started in first grade. The problem is, I don't remember him having strep anytime right before then. Anyway, I brought him to a neurologist who diagnosed with the TS, but it was fairly mild at that point and would come and go. Pandas will still very new, so my Pediatrician did suggest ABX, but he was only on them for about 10 days. It did not do anything to help. My father is an immunologist and a friend of his told him about the Pandas. That is when I found Dr. B. We are lucky to live only about 1/2 hour away and after my son had blood work done, the strep titers were through the roof. The neurologist still calls it TS and Dr. B says it is not TS. His tics never go away completely - so I am not sure what to think. It is kind of a guessing game as far as I am concerned. We did try Tenex, but it did not work, so we decided not to go the route of medication for right now and see what happens. He is still on ABX, and we are going to see Dr. B in a couple weeks - so hopefully he can give us some more suggestions.

Who is ordering the EEG's? Interesting...that seems to be a new one here.

"damaged by the cytokine flood "-----"strep infection can damage the developing brain"----DAMAGE sounds permanent to me.