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Dr. Schulman's Zithro protocol- is it working for anyone?


Sequin
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Have a son age 7 who had overnight onset of TICs back in January- we were told just TICs don't focus on it and it will go away. Wasn't until he broke out in complete rash in August all over his body that my husband thought it looked like auto immune disorder and requested a Strep test- came back positive with ASO titer of 506. He was put on amox for 10 days all symptoms cleared and back to normal then week later tics back again although no longer positve for Strep.

 

I convinced his doctor to do 21 day trial of zithro based on Dr. Schulmans video on DrMDK.com- and low and behold all tic issues went away again. Problem is we are on the 20th day and his physician won't continue the zithro because he is afraid to and knows nothing about the disease.

 

I now have an appt set up for him with Dr. Theinemann in Palo Alto for the end of the month but am curious to hear if anyone is finding this zithro protocol that she has written up to be a working option????

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Have a son age 7 who had overnight onset of TICs back in January- we were told just TICs don't focus on it and it will go away. Wasn't until he broke out in complete rash in August all over his body that my husband thought it looked like auto immune disorder and requested a Strep test- came back positive with ASO titer of 506. He was put on amox for 10 days all symptoms cleared and back to normal then week later tics back again although no longer positve for Strep.

 

I convinced his doctor to do 21 day trial of zithro based on Dr. Schulmans video on DrMDK.com- and low and behold all tic issues went away again. Problem is we are on the 20th day and his physician won't continue the zithro because he is afraid to and knows nothing about the disease.

 

I now have an appt set up for him with Dr. Theinemann in Palo Alto for the end of the month but am curious to hear if anyone is finding this zithro protocol that she has written up to be a working option????

 

We did high dose Azithro (500 mg daily) last Spring for 90 days with Dr Shulman's protocol and my son's tics improved greatly. I have not kept him on it long term. It was a working option for us.

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Have a son age 7 who had overnight onset of TICs back in January- we were told just TICs don't focus on it and it will go away. Wasn't until he broke out in complete rash in August all over his body that my husband thought it looked like auto immune disorder and requested a Strep test- came back positive with ASO titer of 506. He was put on amox for 10 days all symptoms cleared and back to normal then week later tics back again although no longer positve for Strep.

 

I convinced his doctor to do 21 day trial of zithro based on Dr. Schulmans video on DrMDK.com- and low and behold all tic issues went away again. Problem is we are on the 20th day and his physician won't continue the zithro because he is afraid to and knows nothing about the disease.

 

I now have an appt set up for him with Dr. Theinemann in Palo Alto for the end of the month but am curious to hear if anyone is finding this zithro protocol that she has written up to be a working option????

 

That's great that your son's tics responded so quickly to the Azith. I don't know if we count as following Dr. S.'s protocol...but my PANDAS dd has been on abs (mainly 250mg Azith. once daily) since 2008 (she was 7 at the time now 11). Azith. was the 4th antibiotic we tried, and that's the one that really did the trick for us...although not a cure (we also ended up doing IVIG 3 different times b/c of flares from viral infections...). But, Azith. has been a mainstay, seems to do a great job of preventing strep (for us at least, we're also in N. CA), and may have some other anti-PANDAS properties (anti-inflammatory, immune modulating, gets mycoplasma, gets intracellular strep...). Azith. was also the ab that worked the best in clearing our non-pandas younger dd (our PANDAS dd reacts when sister is strep positive) who is an assymptomatic carrier. Augmentin failed to clear her.

 

Do you have other children? Be sure to get throat cultures on them (and you and your hubbie) to make sure nobody else in the household is carrying strep.

Edited by EAMom
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Thank you for your info. Since you are in No. Ca- can you comment on any doctors that you have been to that have helped. I tried to search your posts but saw only that you commented on one in NY. We are based in the Sacramento area and having to travel to the Bay- would love to know if anyone out there knows of any doctors in the area? UC Davis doesn't seem to have any that we can locate.

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Thank you for your info. Since you are in No. Ca- can you comment on any doctors that you have been to that have helped. I tried to search your posts but saw only that you commented on one in NY. We are based in the Sacramento area and having to travel to the Bay- would love to know if anyone out there knows of any doctors in the area? UC Davis doesn't seem to have any that we can locate.

 

Yes, Margo is super nice...I don't know if she will rx antibiotics(but she would talk to your ped). I'm guessing she's the doc in the Bay Area who knows the most about PANDAS.

 

Dr. Sean McGhee...pediatric immunologist at LPCH (Stanford). He's a good person to see if you are thinking of IVIG. Also, in general immunologists are less fearful of long term antibiotics, so he may be a good person to see if you are trying to get the "okay" on longer term antibiotics. (There is also a Dr. David Lewis at LPCH, also a pediatric immunologist, who believes in PANDAS, but isn't really interested in seeing PANDAS kids...so stick with Dr. McGhee.)

 

We've also seen Dr. Sarah Cheyette (ped. neurologist)... that was early on, in 2008. She wasn't particularly knowledgeable re PANDAS (she said we were only the 2nd case that she'd seen that she felt was truly PANDAS, my dd had severe OCD/eating disorder/mild tics)...but she did agree that we should continue antibiotics which helped our case with our ped (who like your ped, was leary about long term abs). That said, our dd's PANDAS was severe (she was hospitalised for the eating disorder) so any theoretic risk of long term abs was far outweighed by the potential benefits (avoiding/treating eating disorder).

 

In general, most peds are fearful of long term antibiotics, so what you need to do is find a specialist (or 2 or 3) to say "yes". A ped is unlikely to fight you on the antibiotics if you have recommendations from a "higher authority" (the specialists) that you should continue.

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PS was you son tic only, or did he have any OCD (or other symptoms? tantrums, anxiety, urinary frequency?). How bad were the tics? Did you get videos of them?

 

One concern I have with undertreatment of PANDAS... symptoms may morph (new ones appear), they may become more severe, and his "baseline" may change.

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Just adding my two cents--

 

DD6 sudden onset of eye tic forehead scrunch and severe emotional lability DEC 2010. Took to ped put on 10 day Amox due to + titer level although low.--did not see any improvement till days 8-10. 4-5 days off right back to same tics. Put on 30 day penicillin within 3-4 days tics nearly gone. Put on prophylaxis penicillin until end of school year---happy with results. Sept of 2011 + strep for child babysat in home in conjunction with slight head bob/nod and few and far between eye/eyebrow tic.

 

DD8 in June of 2011 +strep culture, not notified for week, put on amox with no problems. 2-4 weeks post ABX(amox) severe anxiety ensued. Severe separation anxiety. Took all three dd's to new ped. All cultures negative. However glands still swollen, put on Zithromax for 5 days. Both dd 7&8 yrs tics and anxiety better.

 

Question, should I request 30 days Penicillin for both? or only the one who developed the tic????? New ped is more open than old ped.

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Also, has anyone heard that Amoxicillin is the "standard protocol" ---first choice????? I have not been happy with it thus far. Any other input would help.

 

lots of peds like to use amoxcillin as their first choice for strep throat b/c that is what their little red book says to use.

 

However, there is lots of failure of amoxicillin (or pen) to erradicate strep (ie, maybe the red book needs to be updated). Here's an article. http://www.urmc.rochester.edu/news/story/index.cfm?id=981

 

As far as PANDAS symptoms (whether strep has been definitively identified or not), if amoxcillin (or pen) works well for you, that is great. However, many PANDAS parents find stronger antibiotics (azithromycin, augmentin) to be more clinically effective. Maybe part of the reason is that PANDAS kids don't have a good immune system against strep. Or maybe the stronger antibiotics have other properties (immune modulation, glutamate modulation, getting other bugs like mycoplasma, getting intracellular strep) that regular pen does not.

Edited by EAMom
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Also, has anyone heard that Amoxicillin is the "standard protocol" ---first choice????? I have not been happy with it thus far. Any other input would help.

 

lots of peds like to use amoxcillin as their first choice for strep throat b/c that is what their little red book says to use.

 

However, there is lots of failure of amoxicillin (or pen) to erradicate strep (ie, maybe the red book needs to be updated). Here's an article. http://www.urmc.rochester.edu/news/story/index.cfm?id=981

 

As far as PANDAS symptoms (whether strep has been definitively identified or not), if amoxcillin (or pen) works well for you, that is great. However, many PANDAS parents find stronger antibiotics (azithromycin, augmentin) to be more clinically effective. Maybe part of the reason is that PANDAS kids don't have a good immune system against strep. Or maybe the stronger antibiotics have other properties (immune modulation, glutamate modulation, getting other bugs like mycoplasma, getting intracellular strep) that regular pen does not.

 

Many of our ER docs report/see Strep treatment failure with Penicillin or PEN VK, Amoxicilin is OK (later generation that Pen), Augmentin is better (treatment of choice) and Azithro is only prescribed for those with that are Penicillin allergic or fail Amoxil. Severe treatment resistant get Clindamycin. Cephalosporins are alternative to Azithro for those allergic to PEN. Should be later generation than Keflex- either Ceftin, Cefzil or Omnicef.

 

Just FYI,

911RN

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We did azith as our first treatment - for close to 9 months. It got us back to 85%, with just residual OCD left over, but whenever we dropped to a prophylactic dose, he immediately caught strep again.

 

We were switched to Cefdinir (Omnicef) by Murphy and that's what we use now. It provides results, but personally I liked the azith better. When we were on full strength azith, we would see improvement in about 2 weeks, and reach our plateau (85%) in about 4 weeks. We would have weeks long periods where we were primarily "symptom free", dealing only with very mild residual OCD (which seemed more like habit at that time considering his age). But when symptoms came back on the azith - whoa momma! They came back with a vengence...it was rough.

 

On the Cefdinir, we haven't really seen those prolonged "symptom free" periods like we did with the azith, but, while his symptom flares are more often, they are FAR less severe than when he was on the azith.

 

So for us, it was sort of 6 of one, half dozen of the other. They both worked, but in different ways. Did we want longer happy times followed by several ###### days, or less severe and manageable symptoms more frequently.

 

We've now been on a new rx of Cefdir since August for a strep infection, and I can honestly say, this is the first time it doesn't seem to be working. We're not getting any better, he's still pretty bad. He had to be carried to the bus stop kicking and screaming this morning and peeled out of my arms screaming by his bus aide...not a pretty sight. We have an appointment at Murphy's office today, we'll see what they say.

Edited by airial95
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PS was you son tic only, or did he have any OCD (or other symptoms? tantrums, anxiety, urinary frequency?). How bad were the tics? Did you get videos of them?

 

One concern I have with undertreatment of PANDAS... symptoms may morph (new ones appear), they may become more severe, and his "baseline" may change.

 

 

Sorry EAMom- finally getting back to you on your questions? My DS is primarily TIC only- when he is having an exacerbation though he has more difficulty focusing and isn't nearly as fast in math skills etc. Usually a very good student though so it isn't terribly noticeable. He is almost distant like- I have asked him about it and he says he gets preoccupied with focusing on the need to TIC. The other thing that I notice is the crazy sense of smell- he just goes crazy- kind of out of the blue about certain smells. I can usually just barely even smell what he is referring too.

 

I did notice that the throat clearing completely went away when we put him on flonase- he always said his throat was itching and he was trying to scratch it.

 

So here is the update on his case. As you may remember we were going outside of UC Davis Medical Group (because they have no PANDAS doctors) to see Dr. Margo Thienemann. We were all set to do that when suddenly the Pediatrics Chair got involved and must have sent an email thru their system about my DS PANDAS case. Another doctor replied to his email that there is some validity to the PANDAS disease and they shouldn't just write it off. So as you can see it has gotten a little political at the moment. IMHO it may be a little embarrassing that the M.I.N.D. institute isn't doing any research on this subject. We are going to see their doctor (the one who responded) now before we see Dr. T. because that way if they can't provide any answers it should make a better case for them to pay out of network costs. So in any event we have postponed our appt with Dr. T for one week. Will let you know how that turns out.

 

 

His Zithro ran out last Monday and the TICs were back again by Wednesday (shoulder jerking)- as I mentioned before he gets a crazy rash that usually appears in conjunction with his TICs on arms and chest sometimes just a little patch even but usually there. So now am wondering about the histamine threads here and possible over production of the histamine in his body. If the Flonase was effective at clearing the vocal TIC by 98% maybe Allegra can help with the motor side?? Not sure but going to give that a try since he is off the abx until we find doctor to work with. One thing is for sure when on abx the TICs go away- that isn't coincidence.

 

Let me know if you have any thoughts? At this point it is like throwing darts in the dark!

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Sorry EAMom- finally getting back to you on your questions? My DS is primarily TIC only- when he is having an exacerbation though he has more difficulty focusing and isn't nearly as fast in math skills etc. Usually a very good student though so it isn't terribly noticeable. He is almost distant like- I have asked him about it and he says he gets preoccupied with focusing on the need to TIC. The other thing that I notice is the crazy sense of smell- he just goes crazy- kind of out of the blue about certain smells. I can usually just barely even smell what he is referring too.

 

I did notice that the throat clearing completely went away when we put him on flonase- he always said his throat was itching and he was trying to scratch it.

 

So here is the update on his case. As you may remember we were going outside of UC Davis Medical Group (because they have no PANDAS doctors) to see Dr. Margo Thienemann. We were all set to do that when suddenly the Pediatrics Chair got involved and must have sent an email thru their system about my DS PANDAS case. Another doctor replied to his email that there is some validity to the PANDAS disease and they shouldn't just write it off. So as you can see it has gotten a little political at the moment. IMHO it may be a little embarrassing that the M.I.N.D. institute isn't doing any research on this subject. We are going to see their doctor (the one who responded) now before we see Dr. T. because that way if they can't provide any answers it should make a better case for them to pay out of network costs. So in any event we have postponed our appt with Dr. T for one week. Will let you know how that turns out.

 

 

His Zithro ran out last Monday and the TICs were back again by Wednesday (shoulder jerking)- as I mentioned before he gets a crazy rash that usually appears in conjunction with his TICs on arms and chest sometimes just a little patch even but usually there. So now am wondering about the histamine threads here and possible over production of the histamine in his body. If the Flonase was effective at clearing the vocal TIC by 98% maybe Allegra can help with the motor side?? Not sure but going to give that a try since he is off the abx until we find doctor to work with. One thing is for sure when on abx the TICs go away- that isn't coincidence.

 

Let me know if you have any thoughts? At this point it is like throwing darts in the dark!

 

Oh, I forgot about the M.I.N.D. Institute! Have you seen this video? Sue Swedo spoke there in 2006:

Clinical Clues to Environmental Triggers: Lessons from the PANDAS Subgroup

http://www.ucdmc.ucdavis.edu/mindinstitute/videos/video_tox.html

 

There are various threads about PANDAS kids having high or low histamine levels, and also various anti-histamines. My PANDAS dd gets a chlortrimeton anti-histamine on most days due to exercise urticaria (she can get itchy when she runs). I think this is unrelated to PANDAS. I have the same condition.

 

 

 

That's good that your son's tics go away on Azith. For us, tics have been a milder symptom (not a big deal compared to the OCD) but they are the slowest to go away (least responsive to treatment). When we first "discovered" Azith, mood started to improve in 5 days, OCD in 2 weeks, tics took 4-6 weeks. But, for other kids, tics go away more easiliy. Did I already ask you about advil? Sometimes that helps PANDAS symptoms.

 

Yes, it would be defintely be better to be treated locally! Let us know how UC Davis does. I wonder what they are going to say about the rash as well. Take pictures of that too.

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