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Penicillan Prophylactically?


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We have a dd9, diagnosed with Pandas at age 8.

 

Have a great pediatrician and we are meeting to discuss the topic of penicillan prophylaxis next week.

Questions for anyone who has used it ( or decided not to, I would like to know why):

 

1)What dosage was your child on ( and how much did he/she weigh? My dd is around 55 lbs)

2) What have been your results? Was it worthwhile?

3) Did you think the, potential, long term effects of a long term antibiotic outweighed the PANDAS issues?

 

Thanks so much. I do not know enough to have an opinion at this point. My daughter does very well on Omnicef.

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We gave my daughter Pen vk from Aug '09 to February '09. It was 200 mg twice a day, she was 6 yrs old and her weight was between 45-50 lbs. She had some strep exposure in school throughout the fall of '09 with no PANDAS exacerbation, but when my other 3 children tested positive for strep she continued to test negative on the rapids and culture even though her symptoms came back. She was just about 50 lbs, and (I think-going strictly by memory) we were going to ask for a dosage increase by the time she hit 50 lbs...but her reluctance to eat caused her to lose about 3 lbs in 2 weeks.

 

Based on symptoms alone, my pediatrician gave us Omnicef 150mg 2x/day, and we saw improvement. Dr. L prescribed a month of prednisolone and continued on the same dose of Omnicef. August of '10, we dropped her to 150mg Omnicef daily as a prophylaxis, and that has prevented another exacerbation. I would say, though, that we can hoover between 99%-100% without OCD....depending on school exposure, allergies and stress. Frankly, having sub-clinical OCD is negligible--my husband & his family, have tendencies toward OCD anyway...so it's our normal.

 

We didn't go back to Pen vk as a prophylaxis for 2 reasons...we did try a week of amoxicillin in March '10 when we saw Dr. L, but my daughter broke out in a rash (she had one a year before in '09 too). So every doctor I have spoken to since said that the penicillin's are not an option for her because of a possible allergy, secondly, I felt that if it didn't protect her when strep came into our home, it was a failure. So I am happy to have her on a different class of antibiotic.

 

Penicillin is a narrow spectrum antibiotic, so essentially, you have minimal risks against your gut flora, but I think probiotics should be given with all antibiotics anyway.

 

For my daughter, the difference is so stark that I feel obligated to protect her from strep, and as long as a doctor will prescribe them, I will give her antibiotic prophylaxis.

 

I also have an uncle who took penicillin for over 20 years because he had rheumatic fever as a child. He told me he never had any side effects from the penicillin.

 

Good Luck.

Edited by Kayanne
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Penicillan was the 1st prophylaxis we tried. It was years ago so I don't remember the dose, but it was lower than treatment dose. It didn't help so we moved on to stronger abx at higher dose. I guess the risk/benefit ratio depends on how debilitating your child's condition is and what are the other options. We have very debilitating symptoms and I think abx is safer than psych meds (which we've not been successful with in any case).

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My son takes pen vk 250 twice a day. For my child, he suffered from 3 full blown strep triggered exacerbations. He was not on proph antibiotic during that time. My son can maintain remission without abx, but I feel because he has experienced so many assaults on his brain already and has experienced a lot of suffering even with starting abx within hours of onset 2 and 3, I owe him every precaution I can.

 

If strep is in our house, we do switch his antibiotic to full strength, treatment dose Omnicef as an added precaution. Then switch him back to pen vk after the 10 days of Omnicef.

Edited by Vickie
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I've had mixed results with varying zith schedules. Zith has a relatively long 1/2 life- but not a whole week! It is taken up by the tissues, so doesn't stay in the blood stream.

 

Initially on zith, we did a 250mg dose daily for 5 days, then took 7 days off to allow it to go out of the system. My daughter repeatedly got strep on the off days.

 

We finally went with 500mg every other day, beginning with a loading dose of 3 days straight. We do sometimes get breakthrough strep, but strange, w/ positives rapids but negative cultures. But that same thing happened after a treatment course of clindamycin. When I tried weaning the zith, saw increase in behaviors, so for now, we are sticking with the every other day dosage.

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We have one d (75 lbs) on 250 azithro every day -- the other on amoxicillan 500 mg twice a day.

Summer of 2010 both girls were exposed to strep (via day long playdate w/ 3 kids, all 3 had strep.) Both daughters flaired (though they never test positive for strep--at least we have not caught it.) -- but OCD/ODD raged.

 

We have them both on the abx (and did a steroid burst for one and IVIG for the other during the past year.) Hope that helps.

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My ds's neurologist recommended azith 250 mg twice in one day, one time per week, so a total of 500 mg once per week, for his prophylactic dose. I believe, but am not positive, this dose comes from the prophylactic dose recommended for rheumatic fever. His ped and I were worried this would not provide enough coverage so he takes 500 mg (250 mg AM and 250 mg PM) two times per week. He has been on this dose since April. He has had two exposures since then, both close and one of them very close, and he did not flare either time. But, he had a flare a couple of weeks ago for an unknown reason. We switched to Augmentin XR for 10 days and he was fine. He is back on his prophylactic azith dose now. This dose seems to work well for him, but there is no standard prophylactic dose so you will find there are many different dosing schedules depending on what works for the particular child. We live in an area where there is a known high strep resistance to azith, but it has been the abx that works the best for ds so far so we keep our fingers crossed.

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