Treatment Protocol

[lfran]

Greetings.

 

Just wondering if there is a treatment protocol for treating PANDAS with antibiotics.

 

I would like to have information to give to my pediatrician about dosage and length of time for zithromax and/or Augmentin.

 

Thank you.

[T_Mom]

Greetings.

 

Just wondering if there is a treatment protocol for treating PANDAS with antibiotics.

 

I would like to have information to give to my pediatrician about dosage and length of time for zithromax and/or Augmentin.

 

Thank you.

 

Hi Lfran--

The effectiveness of antibiotic use seems to be different in in different children, and you may need to change the type and/or dose amount over time. (For example, we have used 3 different antibiotics over time, to see which was most effective.) For us the key has been using a full-strength (at least) dose for an extended period of time.

 

In our experience a month of full strength antibiotics was a first step to SEE if a child reacts to it, if OCD goes away, if ticcing is diminished.

 

I would see the Pandas info. websites online (such as www.pandasnetwork.org and others) for reference to research articles. Provide your pediatrician with some of the "Helpful threads" posts located at the top of the Pandas forum, authored by Buster--these are excellent and provide an informed resource. This information is certainly representative of our collective knowledge/experience w/ Pandas. If your doctor has questions request that she gives one of the doctors currently seeing (and having success) with Pandas children a call--to discuss what has worked.

 

We certainly found antibiotics to be worth a try--and a relatively benign treatment. (We give probiotics as well to balance the intestinal issues--)

 

edit:

oops--I see now that this same info, is already posted on another thread. Good info. all--

Edited April 29, 2010 by T.Mom

[thereishope]

Have you seen the artcile about the failure of amox and pen in erradicting strep? May be good to bring along in case he gives you the speech about penicillin will always erradicate strep and tries to give you a script for that.

 

Amoxicillin Failure in Sterp

http://www.entrepreneur.com/tradejournals/.../169459644.html

Edited April 29, 2010 by Vickie

[nevergiveup]

Have your doctor call Tanya Murphy, she is on the board for Got Strep? Pandas Foundation. She is an amazing expert in Pandas and has a study on both cefdinir and augmentin. She can report dosage to your pediatrician. She recommended to us augmentin, says it appears better for tics. Still not done with cefdinir study. She is located in Saint Petersburg Florida. She really knows her stuff about the immune system and may also be able to direct your ped on immune testing. Dosage and length of abx are important, and most pediatricians don't have any guidance on this. Once her studies are finished and published, pediatricians will have more info. I am not sure how she feels about zithromax, your pediatrician can ask. Good luck. My dd was on penicillin vk and this was not strong enough to prevent relapse so I do think having the right abx is important to prevent future relapse.

[trggirl]

Nevergiveup,

 

I have not heard that Augmentin was better for tics. Do you know where Dr. Murphy got that information? Was it her own observations or a study? That would be good information to have.

[T_Mom]

Have you seen the artcile about the failure of amox and pen in erradicting strep? May be good to bring along in case he gives you the speech about penicillin will always erradicate strep and tries to give you a script for that.

 

Amoxicillin Failure in Sterp

http://www.entrepreneur.com/tradejournals/.../169459644.html

 

 

Just a word about Amoxicillan. My daughter had a very severe Pandas exacerbation and good ol' Amoxicillan worked wonders for her--during 3 different exacerbations of illness that triggered severe OCD and tics we saw an obvious diminishing of OCD/tics within 48 hours once full strength Amoxicillan was started.

 

Given my choice, at the time, I would have started with something stronger, but in retrospect I am glad I can say that Amoxicillan may work if you want to try it as a first defense, realizing you may need to move to something stronger. Other families have had good results as well with Amoxicillan long term. Our d has been on full strength Amoxicillan for 14 months, and will continue God willing nothing else is required!

Edited April 30, 2010 by T.Mom

[lfran]

Thank you, everyone!

[thereishope]

I'm curious, T Mom....my son actually recovered on amoxicillin as well....if someone were to ask us how long they should try amox for before throwing in the towel (knowing that it often doesn't work), what would you say? For me, we worsened at first then it took 3-5 days to see any improvement. I wouldn't suggest the month trial like others do for other meds. Considering the failure rate of amox in the PANDAS community, I say give it only a week then change abx if no improvment at all is occuring. What do you think?

 

 

 

 

 

Have you seen the artcile about the failure of amox and pen in erradicting strep? May be good to bring along in case he gives you the speech about penicillin will always erradicate strep and tries to give you a script for that.

 

Amoxicillin Failure in Sterp

http://www.entrepreneur.com/tradejournals/.../169459644.html

 

 

Just a word about Amoxicillan. My daughter had a very severe Pandas exacerbation and good ol' Amoxicillan worked wonders for her--during 3 different exacerbations of illness that triggered severe OCD and tics we saw an obvious diminishing of OCD/tics within 48 hours once full strength Amoxicillan was started.

 

Given my choice, at the time, I would have started with something stronger, but in retrospect I am glad I can say that Amoxicillan may work if you want to try it as a first defense, realizing you may need to move to something stronger. Other families have had good results as well with Amoxicillan long term. Our d has been on full strength Amoxicillan for 14 months, and will continue God willing nothing else is required!

Edited April 30, 2010 by Vickie

[P_Mom]

Amox. worked for my older son like a miracle when he manifest with sudden onset motor tics/adhd behavior one day after strep.

[thereishope]

Then I'll throw the question to you too...how long do you think people should give amox for before they move onto something else? Did your son worsen for a few days on amox before any improvement?

 

 

Amox. worked for my older son like a miracle when he manifest with sudden onset motor tics/adhd behavior one day after strep.

[lfran]

Thanks!

 

I checked out the Got Strep site, but didn't see a contact for Dr. Murphy. Do you have one? And does she tend to be willing to talk to doctors?

 

I have an appointment next Monday.

 

Thanks!

 

 

Have your doctor call Tanya Murphy, she is on the board for Got Strep? Pandas Foundation. She is an amazing expert in Pandas and has a study on both cefdinir and augmentin. She can report dosage to your pediatrician. She recommended to us augmentin, says it appears better for tics. Still not done with cefdinir study. She is located in Saint Petersburg Florida. She really knows her stuff about the immune system and may also be able to direct your ped on immune testing. Dosage and length of abx are important, and most pediatricians don't have any guidance on this. Once her studies are finished and published, pediatricians will have more info. I am not sure how she feels about zithromax, your pediatrician can ask. Good luck. My dd was on penicillin vk and this was not strong enough to prevent relapse so I do think having the right abx is important to prevent future relapse.