Immunologist/Rhematologist/ID Specialist

[KeithandElizabeth]

I am still so confused about the antibiotics. Our 7 year old son will be having IVIG next week. He is currently not on antibiotics. I am thinking, based on this forum, that we should ask for 2 months of azithro. to clear out possible intracellular strep and then to maybe go to augmentin for the rest of the year so he does not develop a resistance to the higher dose antibiotic. What do you all think?

 

I also plan to add in 300 billion units of probiotics a day as well as colloidal silver and olive leaf extract to prevent further illnesses.

 

elizabeth

[EAMom]

Yes, your son should definitely be on antibiotics. If he gets the IVIG and then gets another strep infection would likely put him back to square one. (I also honestly don't know if IVIG is less effective if there is some intracellular strep hiding out in body somewhere, before, during, after IVIG? Nobody has really studied that....but the theory seems reasonable to me.)

 

Even the kids in the 1999 Swedo PEX/IVIG study were on prophylactic antibiotics (Pen). There were a few kids in the study that had to have IVIG or PEX repeated due to exposure to strep post IVIG/PEX. If they weren't on abs, I would imagine you would even more failures (esp with kids actually getting strep, not just exposed). Colleenrn even said she knew that at least one of the swedo families put ALL 4 children on pen after their PANDAS child had PEX...to keep strep out of the household.

 

At 1 year after treatment, 17 children initially assigned

active treatment were reassessed (plasma exchange, eight;

IVIG, nine). Three children had had a second course of

immunomodulatory therapy in the intervening months.

One child in the plasma-exchange group was retreated with

plasma exchange for a symptom exacerbation 10 weeks

after initial treatment, one was treated with IVIG at 4

months, and one in the IVIG group had a second IVIG

treatment at 2 months. At the time of their symptom

exacerbations, all three children had a history of

streptococcal exposure and increased antistreptococcal

titres despite prescription of oral penicillin prophylaxis.

[EAMom]

Hi Elizabeth...

 

Me again. I actually have a concern that doing the IVIG without antibiotics will be a big waste. Exposing your son to all the risks of IVIG without sustained benefits. (I hate to push it off on Diana Pohlman...but she is pretty well connected to many of the experts in the PANDAS field....you might consider calling her or sending her an e-mail.) Were you the one who had doctors who admitted that they are not pandas experts? Then it would seem reasonable that they should heed the advice of Dr. Kovacevic, Dr. Swedo (NIMH), Dr. James Leckman (Yale), and Dr. Latimer (DC) all of whom I know routinely use antibiotics (although there seems to be debate on which ones they feel are best) both pre and post-IVIG. I understand that Dr. Leckman has helped others get antibiotics in the past, so that is one avenue to explore. Also, since he is from Yale (big name) you have a chance that your doctors might actually listen to him.

[Kayanne]

Colleen,

 

Thank you for all of the great info...I cannot thank everyone on this forum enough.

 

I think we are at a point now to try to back down from the azith...I am crossing my fingers hoping like ###### that all of the strep has cleared from her body, but I will not hesitate to go back to azith if needed.

 

I am concerned about missed doses, but I would never do the injection.

 

I'm not really sure what antibiotic Dr. Latimer is going to recommend, however in a very brief email she echoed my sentiments that I would like to put dd6 on a more benign antibiotic. We have a phone consult scheduled soon.

 

I am concerned because she had a "side effects rash" from amoxicillin...does that mean she can't use any penicillian? She was taking it for a strep throat, so Dr. Latimer felt that maybe her pediatrician misdiagnosed it and it was really a strep rash....when that rash happened, we were told to continue taking the amoxicillian....and she didn't really have any other issuses.

 

I've been trying to read about anibiotics in general...can anyone recommend a website that has good info on them?

 

 

Kayanne,

I agree that there is no in vetro resistance of strep with PCN (in a dish), BUT it is much different in the body. There are two reasons why PCN may not work on strep. One is that if the strep is intracellular, PCN is ineffective.

 

The second reason is that in the body, with certain other common pathogens (Streptococcus pyogenes and Moraxella catarrhalis), these pathogens cause the strep to adhere to the epithelial cells (coaggregation).

 

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

 

I think it is always best to use the "least potent" antibiotic, but these two reasons are why penicillin/amoxicillin do not work sometimes. It was my experience with using thes two antibiotics with my oldest child and not seeing a positive response, that I switched to Augmentin, then a cephalosporin, and finally Zithromax. I am worried that possibly one day the Zith won't be effective, but fingers crossed and lots of prayers, it seems to be working now.

 

DCmom-

It is imperative with PCN that no doses are missed or you will not have coverage. B/c Zith has a long 1/2 life, this is not the case. If you are using PCN, try to give it on a very regular schedule. I too wonder if after using Zith for a long time, would it be best to switch to Augmentin??

 

Dee45-

If PCN is working well for you I would stick with it, but have a low threshold as to symptoms and think about switching if you think it is not working (intracellular strep or coaggreagation). You could always switch to Zith or a cephalosporin, then return to PCN. I definitely disagree with not testing unless you are prepared to treat b/c PANDAS is such a "mystery" that I feel any piece to this puzzle would be helpful.

 

 

Debbie-

What testing did yo ask your Ped about that he declined??

 

Colleen