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Rx not working - Penicillin V


kthomas
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After battling PANDAS for nearly a year, in late October DS7 was finally put on Penicillin V (250 mg. 2 x daily.) The first two weeks his hand movements disappeared, his impulsivity decreased, and his tic all but subsided. He then had an episode with the tic waxing for one day almost to the levels where he was when this nightmare all began. HIs tic and hand movements came back and he is again struggling with impulsiveness, and new tics. I am so disappointed and fearful that there is little relief for him. I think I put my faith in the rx working and since it is not I am left a feeling of hopelessness. I remind myself that this is just the first round of penicillin and perhaps he needs a different type of antibiotic. Has anyone had luck with penicillin v, or have suggestions.

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kthoms-

 

I have two daughters with pandas. Both initially remitted from 30 days of zithromax. Further episodes, caused by various illnesses, required immune modulating treatments (steroids, pex, etc).

 

We view the pandas symptoms as an autoimmune reaction to illness. We currently use the appropriate, aggressive antibiotic to treat the illness, but then rely on steroids to halt the autoimmunity.

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Do not dispair...many do not respond to penicillin alone. The fact that you got some relief from an antibiotic is a positive sign. You just need to keep moving forward in finding the appropriate one. Antibiotics are like shoes to PANDAS, you may have to try a few before getting the right fit. I agree with the previous poster, Zith is a good one to try. It covers both strep and myco p. Usually the hardest part is finding a physician who will agree to help you in this process. If you have found one already, you have half the battle conquered. Best of luck.

 

Dedee

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Penicillin didn't work for us, and neither did Zithromax (we had a week long improvement, then a tic appeared again), or Augmentin (which the doc tried given it's success for Sammy). The only thing that seems to help here is cephalexin, or cephidir (sp?). Trial and error, unfortunately.

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Dr. changed rx to azithromycin (200mg 2x per day, one x per week) Thank you to all who responded. Appreciate the information. (DS7 weighs 53 lbs.) What was the dosage for azithromycin that was rx-ed for your children?

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Dr. changed rx to azithromycin (200mg 2x per day, one x per week) Thank you to all who responded. Appreciate the information. (DS7 weighs 53 lbs.) What was the dosage for azithromycin that was rx-ed for your children?

 

If that doesn't help, you may need to increase the Azith. dose to daily. Our dd was on 250mg daily when she was that size.

 

With PANDAS, it usually doesn't pay to be conservative with antibiotic dosing. To get improvement with antibiotics, it's important to use the "right" antibiotic (which can be trial and error, as some kids repond better to Azith, others Augmentin, etc) as well as a high enough dose.

 

You may eventually experiment with a lower dose but at least initially, the low doses often aren't effective.

 

IMO, PANDAS kids don't have a "good immune system against strep" which may be one reason lower doses don't seem to do much for them.

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  • 5 months later...

Dr. changed rx to azithromycin (200mg 2x per day, one x per week) Thank you to all who responded. Appreciate the information. (DS7 weighs 53 lbs.) What was the dosage for azithromycin that was rx-ed for your children?

 

If that doesn't help, you may need to increase the Azith. dose to daily. Our dd was on 250mg daily when she was that size.

 

With PANDAS, it usually doesn't pay to be conservative with antibiotic dosing. To get improvement with antibiotics, it's important to use the "right" antibiotic (which can be trial and error, as some kids repond better to Azith, others Augmentin, etc) as well as a high enough dose.

 

You may eventually experiment with a lower dose but at least initially, the low doses often aren't effective.

 

IMO, PANDAS kids don't have a "good immune system against strep" which may be one reason lower doses don't seem to do much for them.

 

This is an update from my prior posting in March. DS8 had seen remarkable results with the lower dosage - all tics gone and OCD behavior gone, but socialization is still a big issue. HIs impulsiveness and ADHD behaviors have improved some, but continue to be a problem in the classroom. He is also verbally unkind to others to the point that he is loosing his best friend because of the hurtful comments he continues to make. Has anyone else seen that the tics and OCD behaviors improve before the behaviors. Do the behaviors eventually improve?

We went to a new doctor last week that was listed under treating physicians on pandas network.org. Dr. Bruce Russel in Port Aransas, TX. He was fantastic. The doctor increased the rx to 250 mg. of azithromycin daily instead of 500mg once per week. I am hoping that this will help with ADHD/impulsiveness behaviors.

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