jtp Posted May 11, 2012 Report Share Posted May 11, 2012 Hello, I was reading junkyardjeans post and got me thinking/worried. I read over and over that most(not all) Pandas children have an exacerbation first from strep then go on antibiotics and their symptoms subside. We have never had this happen so I'm concerned that I am doing the right thing. My DS first episode 2008 (he was 8) started after taking antibiotics for bronchitis/ear infection (amoxicillan). He was fine on the antibiotics but then several weeks later began the tics and bizarre behavior. His rolling eye tics were the most frightening. Our pedi checked for Lyme and Strep with a blood test and he neither showed up. His tics/behavior lasted about 4mos then subsided. He was diagnosed with transcient tics. Now in between episodes he had colds/fevers etc without antibiotic use and never developed any more tics or bizarre behavior. 2nd episode summer of 2011 (he was 11) after a few months of stuffy sinuses and post nasal drip/cough he developed an ear infection. He was prescribed Zithromyicin 5 days. Infection cleared no problems but two weeks later he went right into eye rolling tic again and a bit more hyper/not listening and focusing. Back to the Pedi same scenario again he was diagnosed with transcient tics. So now I have this connection with tics/behavior and antibiotic use. I have brought this up with the Pediatrician and asked if he had a reaction to antibiotics and she said that antibiotics would not cause this. My husband tells me to stop with this association of the two because I have been told by two doctors that this could not be caused by the antibiotics. I also understand that this is an autoimmune problem so his antibodies could have caused the delayed tics/behavior. Anyway reading junkyardjeans post today made me think, is it possible that my son was herxing after taking the antibiotics? He didn't have any problems with the antibiotics while taking them. We just saw Dr B last week and he prescribed Augmentin but changed it to Zithro because I recalled him getting stomach upset with that when he was younger(before all this). He still has ongoing sinus issues So he was prescribed 200mg in AM and 200mg PM until we see him in June. I will be giving him probiotics as well. He is not having any tics/ or behavior issues right now and I'm just a bit worried that this treatment may bring them back on. He only has a few weeks left of school and it's his last year there so I want him to enjoy it and not struggle with tics and hyper/focusing issues. Sorry for the long story (this is why I don't post often, haha). If anyone has had similar experience, or if this could be herxing from the antibiotics please let me know. Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted May 11, 2012 Report Share Posted May 11, 2012 I can't say definitively, but I know I've read several accounts of "herxing-like" reactions with antibiotics at times, depending upon what the infectious agent is, the abx, etc. I may be wrong, but at least anecdotally, herxing seems to be more common among lyme patients than among strep or myco p. I don't know if that is by virtue of the agent iself, or the way the body's immune system handles the agent and/or the treatment, etc. Likes most things where PANDAS/PANS is concerned, it seems to be very individualistic. My DS did not, at least in my view, "herx" while on antibiotic treatment for strep. However, he did have periods of better behavior and worse, and those weren't always in conjunction with exposures or allergies or other things that I could readily discern to have impacted him (my DH sometimes rolls his eyes at me, too, for trying to "cause and effect" every reaction, however small or fleeting, so I can relate ). I sort of came around to a theory that my DS was contending with some "intracellular strep," or strep hiding away in biofilms in the recesses of his gut and/or his sinuses, and as those biofilms were infiltrated or broken and the strep "released," his body had to step up the antibody production again and that was the "why" behind the flare in behavior, rather than it being the fault of the antibiotic. Don't know if that's right in any way, shape or form, but as we stuck with the antibiotic, those "flares" reduced over time so I wound up feeling sort of validated in my theory. I wonder if you've looked into yeast with your DS, also? I've seen a lot of behavioral increases linked to yeast overgrowth, too, which might require an antifungal or some hefty probiotic response to get it in check, if so. Good luck! Link to comment Share on other sites More sharing options...
LNN Posted May 11, 2012 Report Share Posted May 11, 2012 I think Nancy's suggestion of looking into yeast is a great idea! It's amazing how a yeast infection can cause neuro symptoms, especially in boys where you don't get the tell-tale itching. FWIW, in addition to probiotics, we've seen yeast issues go away by adding garlic pills to our regimen. (also good for the heart). My other thought was maybe the infection or the antibiotic is causing some sort of deficiency. Like maybe the body's need for zinc or magnesium is 100 every day. But when illness comes, the body needs 160 units. So it initially robs from every cell, every place it can find the stuff (like looking for change under the couch cushions). Over a few weeks, there's no more spare change to be found and the body becomes depleted of this mineral/vitamin whatever it is. And that deficiency is leading to tics. Eventually, as the body heals and deficiencies resolve (coins are again lost in the cushions), the tics resolve. I'd look for deficiencies that can cause tics (magnesium is one but I know there are others) and I'd also go after yeast (if yeast, you may see a herx - a worse before better - response for a few days). (Yes, Nancy, the analogies were for your benefit - I know how you love them so ) Link to comment Share on other sites More sharing options...
chase23 Posted May 11, 2012 Report Share Posted May 11, 2012 i think its also possible that the times he has reacted with pandas like symptoms were because you were dealing with strep, i know it can hide in ears and nose etc. perhaps the other colds where he did not react did not involve strep. your son may not mount a defense to strep which is why you wouldn't see a rise in antibodies. my daughter never has it show up in blood work. also that blood work has to be done several weeks apart and done just right. because your son gets tics when antibiotics stop i am guessing you are dealing with pandas. they really need those meds for a long time, the typical 10 day or 5 day course doesn't work Link to comment Share on other sites More sharing options...
Dedee Posted May 11, 2012 Report Share Posted May 11, 2012 Also, please remember that not every PANDAS child will have elevated strep titers. That is why the PANDAS specialist will say that you can't use that as a diagnostic tool. My daughter's strep titers always run just slightly above normal and I have had some doctors tell me that is just normal for her. NOT! This is a hard concept for the average MD to grasp. Dedee Link to comment Share on other sites More sharing options...
Stephanie2 Posted May 12, 2012 Report Share Posted May 12, 2012 I doubt it's herxing b/c I believe you would see that WHILE on abx. My guess is that the abx delayed the onset of pandas symptoms, OR he is developing a gut bug (bacteria or yeast) which is causing the tics. Yeast would be my guess. Link to comment Share on other sites More sharing options...
jtp Posted May 12, 2012 Author Report Share Posted May 12, 2012 Thank you everyone for your replies they are all very helpful. I am giving my son Florastor this time while he's on zithro and will continue when he's done. In the summer I gave him Dan Active when he had antibiotics but maybe that didn't work for him. I heard that Florastor works well from this forum. The yeast theory has always been on my mind because the problems happen after antibiotics but can someone let me know who do you go to for yeast issues? Our pediatrician isn't very helpful and I already switched from a pediatrician who was even less helpful. It's so hard to find a really good doctor these days. How is yeast overgrowth diagnosed? Do you see a Naturopath Dr? I live in North Central Mass if anyone knows of a helpful ND in our area please let me know. I will keep doing what Dr B has prescribed for him, but should a problem arise after the antibiotics or while on them like before I would love to get some advice from a professional that deals with yeast as well. We don't get our results from Dr B until June. He has only been on antibiotics a few times in his lifetime and everytime he has to go on them I get nervous. This time its for an extended period of time and a higher dose. I'm going to hope for the best. Link to comment Share on other sites More sharing options...
LNN Posted May 12, 2012 Report Share Posted May 12, 2012 We use garlic pills in addition to daily probiotics (theralac/truflora alternating during the week). This seems to really help. There's an integrative practice in Northampton. They don't treat Pandas but the docs would be attuned to yeast and using supplements to support the body and they understand how methylation effects health. http://www.northamptonwellness.com/ And...they accept insurance! So it wouldn't replace your Pandas doc but could be a helpful addition. FWIW - I know many swear by florastor and Sacc Boulardis. But my son seems to react to it as if he had a yeast infection. His behavior gets ramped up, hyperactive. He does much better on Theralac. So just something to bear in mind. No science supports my observations, but after three attempts at using it, I've stopped. Link to comment Share on other sites More sharing options...
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