WorriedDADNMOM

Just like questions in a court of law can be leading. My take on her answers was she was leading while staying above the fray/controversy. Answering literally, she, I think, strengthens the case for Pandas,SC,RF------the whole untreated strep case is bolstered by her answers. The fact that it is being talked about is good enough for me at this point.

Abbe--------The understanding I have with why azithromycin is more commonly used 1) High failure rates of amoxicillin which is a derivative of penicillin. 2) Allergy to penicillin. 3) Broader spectrum of antigens it is effective against. 4) Supposed immune modulating properties. Hope this helps.

Hi Abbe-----our dd's have both been on amoxicillin. 1 time for impetigo and I do not believe it eradicated the impetigo. She came down a year later with an asymptomatic strep infection leading to 1st severe tic and amoxicillin did nothing for it. We changed after 10 days amoxicillin and 2-3 days post amox to penicillin. It took care of the tic. Have since found mycoplasma and have been doing azithromycin for it and strep. She has had one or two exacerbations. Tic cleared fairly fast with azithromycin. Doing better and also on supplements and lt abx. Other dd8 developed severe sep anxiety/anxiety after bout with normal typical symptomatic strep caught pretty early. 10 days amox I again DO NOT BELIEVE it eradicated the strep. Her tonsils and glands stayed very large and anxiety started about 3-4 weeks post infection. Large glands, cyclical vomiting and anxiety remained for several months. Changed ped and got azithromycin. Anxiety was gone almost immediately. Subequent visit to pandas ped, more abx, supplements, dd is back her I would say 95-98% of where she was. She was perfectly healthy prior to strep infection. So, My only suggestion would be is go with your gut and try to get to a Pandas knowledgeable ped. Also, testing for aso titer for strep may not show elevated titer. This does not mean strep was not previously present.

Yes, you need to discard is what we have been told. We only have them mix 10 days worth at a time. If you have questions, the pharmacy should be able to help.

As I sit here and read this, I am in shock. I have had two docs---1 ped and 1 Infectious disease doc ask me point blank if my dd had bad reaction to a vaccine. I can only wonder as I am not sure. Have not done too much backtracking since trying to get our dd's well. As for future vaccines, it is a definite no. Thanks for this info.

Our Integrative pedi does 10 days during exacerbation then MWF 200ml or mg. We tried for 2 weeks then had severe outbreak of fever and tics. Did another course and are going to do MWF for longer term. This in conjunction with a whole bunch of supplements. Probiotics are key with LT abx. Hope this helps.

Missbusy, yes get to a Pandas/Pitand/Pans doc literate/believing doc right away. I am convinced that with our dd8 who had the anxiety post strep has gone full circle back to pretty close to who she was. However the tics in our dd7 whom we know has been infected for a longer period is having more difficult time with more recent infections(other than strep). She is still struggling to get back to close to "baseline"------- if we can even figure out what that is. But our DD8 is doing better. Our thoughts and prayers are with you. Some things to research would be supplements for mood, immune booster, anti inflammatory and other stuff. Would share our info if needed.

I would add to look or Google Integrative medicine or Pediatricians in your area in addition to DAN docs. Depending on your local, there is a list of docs on Facebook Saving Sammy page and on this Forum somewhere. You should be able to search for it. Hope this helps

How do you get tested for pyrrole disorder? Are there specific symptoms to look for? I keep hearing about this and wonder if I should dig deeper. Is that a specific test? Or is it one that would be in the general round of bloodwork they do for PANDAS? How does it show up on the bloodwork? I have not seen the test results myself so I am not totally sure. From my understanding, it is a urinalysis test checking vitamins b an zinc for sure. Specific symptoms that the doc looks for is white spots on nails. Others are on this link: http://www.nutritional-healing.com.au/content/articles-content.php?heading=Pyroluria Hope this helps!!!

In addition, our dd's were diagnosed with pyrrole disorder along with Pandas which made them suspectible to pandas and weakens the immune system. We are on Enhansa, but we are also on Cod liver Oil, prescription multivitamin, vitamin d, vitamin b, primrose oil, and middle dd who has been infected longer is on abx and probiotics. We have liked the whole integrative path much more. The first 6 weeks, we saw very good improvement. So for us, it would be hard to say for sure if the Enhansa is working alone or in tandem with other supplements.

Question for all------ My wife and dd's have been dealing with Pandas for a year--- 13 months or so in NW Ohio. Just got diagnosed for both dd's Been very upset with the whole thing. Found out in Sept 2011 when school started (9months later) that a girl in my dd7's class had strep and bad reaction too last Dec at same time as my dd. Funny thing is we had the same ped. Anyway, in light of all this and the Leroy case----------------------WOULD YOU GO TO THE MEDIA?????? Would like to hear from those of you that have already. Positives or Negatives------ Or those of you that have considered it-----why or why not. Feel compelled to do it but not sure I want the attention Right now NW OH has no representation----YET????

Are they sudden onset recently?? They can do a aso titer to determine if previous strep infection was present. My dd6 now 7 had very low, albeit positive titer for strep. Amoxicillin did nothing to alleviate the tic. Penicillin then long term penicillin did help. She also was asymptomatic. This was 13 months ago. Have had some worse issues since but addressing them now. If you suspect pandas then go to a pandas literate doctor.

Feed here is a link with a local doc to you. http://www.10tv.com/content/stories/2011/11/22/columbus-unusual-strep-throat-reaction.html

HI JV83-----I cannot speak to your exact case without any history. But there are videos with answers to your question about azithromycin and pandas on the following link. http://www.thedoctorsvideos.com/search/?search_id=pandas&search_type=search_videos&submit=+ All I can tell you is that you are in the right spot. When our dd came down with tics last Dec 2010, I googled what causes tics in kids and found Pandas right from the get go, which has been a tremendous help to start learning about it. Reading these post, and I recommend going back thru older posts, has been invaluable along with your own research. It will help you feel validated that you are doing the right thing and mitigate the feeling that your all alone. As for the treatment protocol, I can only assume your seeing a pandas literate doc. If not, get to one. We got nowhere in the regular medical world regarding our situation. As for our treatment protocol, my dd's were not as bad as some on this forum. DD7 been battling this for at least 1-2 years prior to first tic. DD8 since June 2011. Our Integrative Pediatrician has prescribed Azithromycin for 10 days, Cod liver Oil with vitamin D, Multivitamin called Foundation, Probiotics while on the abx, vitamin b6, primrose oil, and a natural anti-inflammatory called Enhansa which is big in the Autism world from what I have heard. So far so good. We did have a setback a couple weeks back where day fever of 100 degrees and the emotional lability and tics came back with a vengeance, worse than ever. Then started Azithromycin......with very fast remission of tic and lability. Some minor tic and lability still remain. DD7 has been sick so long, we really don't know what her perfect baseline would be. If you need or want any other info, just Private message me and I can supply all the supplements and help in any way.

Here is my theory on why the silence from the medical community regarding the Leroy 12 and resistance to Pandas and just the overall "Antibiotics are used too much campaign" you hear about all the time. My dd's ped said strep untreated can "sometimes" cause tics in a very passive manner then later stated after we requested long term penicillin that she would "probably" have a placebo effect from it as if trying to convince us to get off the Pandas train. Then went on to say Pandas is very controversial and says she doesn't subscribe to it. A kind of acknowledgement then retraction???? What are your thoughts???? I think this is trying to manage mass "hysteria" or shape the strep policy and "the end justifies the means". Since the introduction of abx the last couple generations, we have not seen Sydenhams Chorea, Scarlet Fever etc.....developed country......BUT the medical community knows about this and really does know Pandas is true, BUT there just aren't enough patients with these issues. With all that we know about SC,SF, RF and other infectious agents, we know they are dangerous. BUT-----There are too many other drugs that are now available to treat symptoms,(anti depressants/anxiety, ssri etc) and with abx resistance, we don't want to open a Pandora's box by acknowledging the whole strep thing. If the acknowledgment of Strep causes these issues of mental disease in kids, think of the implications. People will clamor for abx first. Will upend the drug makers and the list goes on. Maybe I am naive or way off base. I am curious as to WHY the skepticism....... Your theories please!!!!!

My only addition would be our dd7 diagnosed with Pandas had little "eruptions" on her face. Not sure what they were. Assumed lingering impetigo from year earlier. Integrative ped has seen that in many Pandas kids. I do know that immune issues can cause this stuff. IE----herpes on lips when immunity is strained. My 3 dd's all had milk allergy as babies. One had severe eczema, one projectile vomiting and one colic. Same thing, just presented differently. Did not figure it out unitl #3 colic was so bad. Hope this helps. Doing any abx or supplements??????

I can remember my oldest dd wigging out when the whole neighborhood kids and parents watching as she cried and ran back in the house, not wanting to get on the bus and go to school, due to very high anxiety and separation anxiety post strep and amox abx. Then my dd ticcing post strep. The embarassment in my mind is gone thanks to the denial of the docs and nurses. Just makes me more determined and has changed my own attitude. I don't give a.................(pick an expletive). As a dad and mom, we will fight and keep talking about this stuff till the day someone walks on the sun. This denial in the medical community is starting to crack. In just the year we have been dealing with this, more and more stuff is coming out and getting into the media. Thinking of the twelve girls in NY with tourettes like illness. Our doc subtly told us that tics can be from untreated strep, did blood work which confirmed strep then later said the long term penicillin that took care of the tics, could have a "placebo" effect. Why the change???? Any thoughts???? Sorry for the soapbox.

I would concur with Blakes mom as my dds 6 developed eye tic and amoxicillin did nothing to fix tic but penicillin did. Then tics came back with latest fever. I would strongly suggest complete bloodwork for strep and mycoplasma to start with and aggressively treat with abx if infection is found. Strep from previous infection can lead to this even with neg strep culture, but elevated aso titer can confirm previous strep. De-bulk the infection then the b vitamins, omega and vitamin d is also on the right track as this is what our doc has done.

I would add Amox did "clear" skin strep----Impetigo In our dd5 at the time but I still thought for the last 2 years something was still up. Same DD6 developed tics after asymptomatic strep (confirmed titer) Amox did nothing for the tic but Peniclillin did take care of tic. Then high temp for one week with flu later in spring confirmed chronic infection when dd was much better after high temp. Then re-affirmed my suspicions with amox after oldest dd8 developed severe anxiety and separation anxiety 3-4 weeks post abx. So two dd's with neuro-psych issues post strep and abx(amox) with not so swift results. Don't give up and keep pressing if you have a ped on board. If not, dump em and go DAN or Integrative Ped or someone that knows Pandas. Hope this helps!!!

Dean, I concurr on zithromax. It is exactly one year ago we started battling this. We are on zithromax and several vitamins and supplements. With this it can be tough getting them to take a larger pill. We use spoonfuls of apple sauce, yogurt or have been teaching them about putting pill in and big gulp or guzzle what ever liquid. Has been harder than apple sauce in the short term but are getting easier as we teach them to get over fear of choking. I recommend getting to pandas/pans literate doc. Abx are good but in our case getting healthy has included many vitamins and minerals. Enhansa has been one. Pm me if you need anything else. This early part is very hard be encouraged and don't give up.

Dean, I concurr on zithromax. It is exactly one year ago we started battling this. We are on zithromax and several vitamins and supplements. With this it can be tough getting them to take a larger pill. We use spoonfuls of apple sauce, yogurt or have been teaching them about putting pill in and big gulp or guzzle what ever liquid. Has been harder than apple sauce in the short term but are getting easier as we teach them to get over fear of choking. I recommend getting to pandas/pans literate doc. Abx are good but in our case getting healthy has included many vitamins and minerals. Enhansa has been one. Pm me if you need anything else. This early part is very hard be encouraged and don't give up.

All, I agree that for us ID was a waste of time and money, which I am refusing to pay at this point. We have abandoned the normal medical route about getting ID and neurology on board and not really treat whatever has been going on. Too much rime and money to keep on that route. Our girls were both diagnosed with Pandas/pans. And pyroluria at an integrativeauto ped. We are doing a cocktail of various vitamins and abx for the dd that has been battling longer. Whatever you choose as a path to recovery that is best for you and you are comfortable with then follow your gut. I just think the medical community is slow to be educated and your living it and you are your chimes best advocate. Just thought I would throw my two cents in. Hope it helps. Good luck and God bless!!!!

Emmalily, I am sorry to hear this about you. You sound like you are older and have dealt with Pandas. Can I ask your age??? I am totally not the best person to ask but figure I might learn something and a least try to help. My dd7 has dealt with first exacerbation post +aso titer was a eye blink/eyebrow/forehead scrunch/eye roll tic. Then subsequent flares we have learned info about mycoplasma. She has tested twice positive for high current infection for Mycoplasma and has had some improvement on zithromax. Her more recent battles have only been slight ticcing of her forehead/eyebrow, but more so, the head bob and "chicken dance" flapping of her arms and squeezing of her thumbs in her fists to try to restrain the movement. She has even had some head roll stuff too. So, to answer your question, I think if there is infection it can come and go. So many of our issues have strep, mycoplasma, EBV, Mold, etc.......There are so many possible external triggers. Questions I thought of: 1) Have you or your doc looked at other bacterial co-infections that might be going on????? Treated with different/stronger abx???? 2) Have you ever looked at other Viral infections???? Treated with anti viral meds. DD had, I believe, Strep in conjunction with EBV(Epstein Barr) which is mono. I know EBV can flare much later than initial infection since it is in the herpes family. I have done alot of reading on encephalitis, encephalopathy and other brain and infection stuff just to try to understand what is going on with my dd's. I look forward to hearing from you. Good luck and God Bless!!!

I will say that my dd7 on Aug 30 tested+ for high IgM titer for Mycoplasma---5.9 H-meaning high.Former ped did not tell us, which is why she is a FORMER. Anyway----- In October, did 5 days Zith with some good improvement but right back to some exacerbation. Then I asked Ped to retest for ASO and Myco again. ASO was neg but still IgM of 3.5 or something close to that. Ped at his own decision did 6 more days of Zith. Much more improvident with it and post abx for about 5 days then comes a low grade fever again with lability. Took her into different Ped in the same group and I asked for 30 days. They pretty much thought I must be a nut. They refused and said she looks normal. Now about 10-12 days post abx, head bob(precursor to the chorea form movements) is coming back. Now going to Pandas literate Ped in early Dec. Won't mess with regular peds until this infection is cleared. I am also getting my myco titer checked as well. Will update if anyone cares. So no, 5 days is not long enough IMHO. Also, a former ped told me last night that she had severe Myco infection in her lungs and her titers always were negative. She said they did a bronchioscope(sp) I think and cultured the tissue or sputum and it was very high in mycoplasma. Keep pushing and keep your spirits up!!!!!!!!

Anyone with any experience with Dr. Allen T. Lewis at Integrative Pediatrics in Columbus,OH. He is one one of the videos posted last week before Thanksgiving regarding "More Pandas in the News" I think. http://www.10tv.com/content/stories/2011/11/22/columbus-unusual-strep-throat-reaction.html Any input is appreciated.