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


Sequin

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We are still using zithro prophylactically. The first time she was on it, symptoms resolved almost entirely, but came back even worse when she stopped it.

 

Couldn't use amoxicillin due to allergy, then we later discovered she was also allergic to augmentin. Also used clindamycin in combination with a steroid burst, which completely resolved symptoms during the 2nd episode.

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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.

 

 

 

Funny how things seem to be intertwined- I was just reading the post on the Texas symposium trying to gain some insight on it when I noticed that Dr. Thienemann was measuring anti-inflammatory in her patients- hadn't considered that as an option. Have you tried it even for the milder tics? If so when do you give and how much? I know it can be problematic on the stomach if taken long term.

 

Thank you for the video link- I did see it when I happened to link UC Davis and PANDAS and thought how ironic that she was here speaking on it several years ago and they have done nothing to further their understanding of it...

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We are still using zithro prophylactically. The first time she was on it, symptoms resolved almost entirely, but came back even worse when she stopped it.

 

Couldn't use amoxicillin due to allergy, then we later discovered she was also allergic to augmentin. Also used clindamycin in combination with a steroid burst, which completely resolved symptoms during the 2nd episode.

 

Interesting that you say symptoms came back worse after abx we had same response. Can you tell me how much and when she is taking the zithro now prophylactically? Was your steroid burst prednisone?

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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.

 

 

 

Funny how things seem to be intertwined- I was just reading the post on the Texas symposium trying to gain some insight on it when I noticed that Dr. Thienemann was measuring anti-inflammatory in her patients- hadn't considered that as an option. Have you tried it even for the milder tics? If so when do you give and how much? I know it can be problematic on the stomach if taken long term.

 

Thank you for the video link- I did see it when I happened to link UC Davis and PANDAS and thought how ironic that she was here speaking on it several years ago and they have done nothing to further their understanding of it...

 

We often give 1 200mg/advil/day (dd is about 70 pounds). Since dd's not full blown right now, sometimes we don't do the advil. The first immunologist (Dr. Lewis) we saw at LPCH felt that 200mg/day was a safe long term dose. But, short term (several days--to see if it helps), I wouldn't have a problem with dosing (give regular dose for their size, give with some food) up to 4x daily.

 

I don't think it did much for tics for us, but when she was really sick with anorexia it helped her mood and she would eat about 40minutes after the advil.

 

It would sure be great if UC Davis gets on the ball with treating PANDAS. I never thought about how political medicine (and the medical community is) is until having a child with PANDAS!

Edited by EAMom
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When she was really bad during the 2nd exacerbation, we started with zithro, but the tics progressed into severe chorea, so then we used clindamycin. she was on (I think, can't totally remember) 500 mg/day, and what seemed like massive doses of prednisone. I remember picking up these gigantic bottles from the pharmacy (liquid prednisolone)I think it started around 60, and then tapered down, maybe 50 for 10 days etc. over the course of a little over a month. The prednisone made her pretty speedy.....but she could walk again within two days. Then she started alphabetizing the bookcases, cleaning everything, etc.

 

She is now supposed to be on zithro 250 twice weekly, prophylactically. It's getting really hard to get her to take it though because she get diarrhea, stomach cramps/gas etc. Sometimes I'm lucky if I get her to take it once a week, but I don't dare let her stop because there's no way either of us could go through that all again.

Edited by oivay
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  • 7 months later...

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.

 

Just curious if you have been able to find a treating dr in the sacramento area. I am new to the forum and are from Sac as well and looking for any advice or referrals. We have UC Davis Med group as our primary.

 

Thanks!

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