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Posted

The local doctors agree that my son has PANDAS, I am just having trouble coming up with a reasonable treatment plan. He is allergic to all cephalosporins, in addition to augmentin and amoxicillin. When strep is confirmed they will treat with 2 rounds of zithromax. Last time we saw a different doc in the pediatricians office and she put him on Clindamycin. My ped was appalled as she was saving the Clindamycin for when we "really" need it. She is afraid he will develop more allergies and we will no longer have any antibiotics he can tolerate.

 

Does anyone else have a similar problem with allergies to antibiotics and how are you treating the PANDAS? I hate to put my son through IVIG if he is just going to get strep again and go right back to where he is. I really think a longer term does of antibiotics might get him back to baseline. We also have not tried the steriod burst yet.

 

At this point we are contemplating flying to a PANDAS expert over spring break - still not sure which one. I know we have a doctor here in Colorado that will do the IVIG if that is the way we decide to go. I just feel like we need a treatment plan from an expert. I know my pediatrician will follow the plan if it comes from an "expert".

Posted

Hi Family of 4-

 

I have two dd's. One is clearly pandas, the other questionable. We have allergy issues with the non pandas (?) dd. If you haven't, the first step is to see an allergist. We did to get a listing on preferred antibiotics, and directives to doctors on how to treat with them. Some rash-type reactions can be side affects, and not life threatening allergies.

 

Zithromax is actually the antibiotic of choice for many on this board. It has the ability to get intracellular, and may have some immune modulating effects. During first episode, pandas dd improved to about 90% after 20 days of full strenght zithromax. Both of my girls are currently on daily treatment dose. Steroids have been very beneficial to pandas dd, as well.

Posted

I know Diana Pohlman's son is allergic to penicillin so he's been on Azith. long term.

 

Dr. Trifiletti (on this board--in NJ) has rx'd both Azith. and Clindamycin.

 

Are your docs considering long term abs? If they won't go for that I do agree you should consider consulting with an expert (like Dr. Trifiletti). Is this the Co. doc you were going to go to for IVIG? http://www.latitudes.org/forums/index.php?showtopic=6346 Have you contacted KeithandElizabeth or momtocole1...maybe he would be also able to give you a long term treatment plan (vs. just IVIG) as well.

 

I hate to put my son through IVIG if he is just going to get strep again and go right back to where he is. I really think a longer term does of antibiotics might get him back to baseline.

 

I completely agree that longer term abs might get your son back to baseline (and would be needed post-IVIG anyway). My dd had IVIG Aug. 09....we're on Azith. long term (250mg/day and she's 54 pounds). We may try to lower that about 1 year post IVIG. We'll repeat the Cunningham values sometime in the next few months as well.

 

Also, has your son had a workup by an immunlogist? Some PANDAS kids are found to have immune deficiencies so monthly IVIG is part of the long term plan.

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