Antibiotic Therapiesfor PANDAS

[KaraM]

I would like to start with Augmentin discussion, since that seems to be where many kids (including mine) end up after many trials of "other." My child is 7, cannot swallow pills, so no Augmentin XS like "Sammy." He is on AMOX-CLAV ES 1200 mg per day divided into two doses, AM/PM. On day 6 1/2 of this med after explosion of symtoms and postive strep culture, rising DNAase ONE MONTH after T & A 6/16/10, which we hoped would HELP!! (oh well).

 

Would like to ask for feedback on any ABxs used, strength, duration of use, positive and negative effects on your child. Esp if you use AMOX-CLAV ES or if your child is on the "young" side. We are sticking w/ it for 6 weeks then re-evluate.

 

Also helpful is child's weight (mine - 53 lbs). Got strep 6th time in 7 months, last time tested positive Monday, 7/12/10 - I brought him in after a "behavior spike" w/ no medical symptoms (ie sore thraot, headache, etc). Blew my mind. Aside, gettig whole family tested again, so far I am negative on throat and nasal area. Even going to test dog. (Strange, has anyone done THAT and where the heck do they swab a dog?)

 

In any case, all feedback appreciated.........

 

Thanks. Many thanks. Chris in Phoenix, AZ

[KaraM]

Hi,

 

My 8 year old duaghter is about 60 lbs. She is allergic to amoxicillan, so can not take Augmentin.

At then end of March, our pediatrician presecribed 350mg of Zithromax for 5 days, then dropped it to 175 until we could see a specialist in early June.

This dose helped her significantly - so she was about 80% better.

When we finally saw Dr. B. in June, he increased her to 350mg again for a month. She improved some more - now she is about 90 - 95% better.

He reduced to 200mg and thinks she will need to stay on that through the winter - unless of course she has an exacerbation..

 

Kara

[AmySLP]

CLEOCIN generic for Clindamycin can actually taste GOOD if flavored with grape-lemonade flavor. A Target pharmacist told me this and she was right! My daughter took it twice over a year period & loved it better that the current Augmentin ES she is taking (we've tried all the possible flavors for it & she still doesn't like it)

 

Anyhow, my then 4 year old daughter was treated with clindamycin after strep was not irradicated after months of ammox & Augmentin at typical doses (we hadn't even heard of PANDAS at that time). Anyhow after 7 months of strep and positive tests continuing following the completion of each ABX, a covering doc put her on Clindamycin, saying that it was indicated at this point as the other ABX had been failures. HE said it was more likely to get rid of strep that had become intercellular. It worked for her getting rid of the strep & all PANDAS symptoms which at that time was facial tics, vocal tics, emotional lability, mild OCD. Then she went to kindergarten 6 months later & then come December there was chronic strep in her classroom. She was doing well, I did not have her on a prophylaxis ABX & she did well until MArch of this year when her sister got a strep infection on the skin. This was the kick-off for where we are currently. Her doctor did a round of Clindamycin again (I can't recall the dose) but this time it did test her negative for strep but did not take away all the PANDAS symptoms. Witrhin a few weeks, more strep in her classroom and she came home one day with obvious choreiform movements. I asked the ped. to start her on Azithromycin knowing it had been successful with kids here (If I recall the dose was 200mg). This worked getting rid of maybe 75% of the syptoms, particularly the choreiform movements, but she had alot of hand tics at that time. We then saw Dr B for the first time. He switched her to Augmentin ES 600 mg twice daily (same as your son. SHe's nearly 6, 50 lbs. She's been on that dose since June 10th. She is 95% better. Dr. B suggested keeping her on it another month & then we'll re-evaluate for reductionof the dose longer term. Anyhow, I think the key is that every child responds different to ABX so it may be about trying a different one. I did learn my lesson though, my daughter will stay on a prophylaxis ABX for some time. I wil not allow her to go through another resurgence of PANDAS. I only pray that the ABX will be enough for her in the long term. At this point IVIG is not needed, but I hope that it stays that way.

[cab40]

CLEOCIN generic for Clindamycin can actually taste GOOD if flavored with grape-lemonade flavor. A Target pharmacist told me this and she was right! My daughter took it twice over a year period & loved it better that the current Augmentin ES she is taking (we've tried all the possible flavors for it & she still doesn't like it)

 

Anyhow, my then 4 year old daughter was treated with clindamycin after strep was not irradicated after months of ammox & Augmentin at typical doses (we hadn't even heard of PANDAS at that time). Anyhow after 7 months of strep and positive tests continuing following the completion of each ABX, a covering doc put her on Clindamycin, saying that it was indicated at this point as the other ABX had been failures. HE said it was more likely to get rid of strep that had become intercellular. It worked for her getting rid of the strep & all PANDAS symptoms which at that time was facial tics, vocal tics, emotional lability, mild OCD. Then she went to kindergarten 6 months later & then come December there was chronic strep in her classroom. She was doing well, I did not have her on a prophylaxis ABX & she did well until MArch of this year when her sister got a strep infection on the skin. This was the kick-off for where we are currently. Her doctor did a round of Clindamycin again (I can't recall the dose) but this time it did test her negative for strep but did not take away all the PANDAS symptoms. Witrhin a few weeks, more strep in her classroom and she came home one day with obvious choreiform movements. I asked the ped. to start her on Azithromycin knowing it had been successful with kids here (If I recall the dose was 200mg). This worked getting rid of maybe 75% of the syptoms, particularly the choreiform movements, but she had alot of hand tics at that time. We then saw Dr B for the first time. He switched her to Augmentin ES 600 mg twice daily (same as your son. SHe's nearly 6, 50 lbs. She's been on that dose since June 10th. She is 95% better. Dr. B suggested keeping her on it another month & then we'll re-evaluate for reductionof the dose longer term. Anyhow, I think the key is that every child responds different to ABX so it may be about trying a different one. I did learn my lesson though, my daughter will stay on a prophylaxis ABX for some time. I wil not allow her to go through another resurgence of PANDAS. I only pray that the ABX will be enough for her in the long term. At this point IVIG is not needed, but I hope that it stays that way.

Edited March 23, 2012 by cab40

[cab40]

Thank you for this bit of humor on spiders!!

Edited March 23, 2012 by cab40

[cab40]

CLEOCIN generic for Clindamycin can actually taste GOOD if flavored with grape-lemonade flavor. A Target pharmacist told me this and she was right! My daughter took it twice over a year period & loved it better that the current Augmentin ES she is taking (we've tried all the possible flavors for it & she still doesn't like it)

 

Anyhow, my then 4 year old daughter was treated with clindamycin after strep was not irradicated after months of ammox & Augmentin at typical doses (we hadn't even heard of PANDAS at that time). Anyhow after 7 months of strep and positive tests continuing following the completion of each ABX, a covering doc put her on Clindamycin, saying that it was indicated at this point as the other ABX had been failures. HE said it was more likely to get rid of strep that had become intercellular. It worked for her getting rid of the strep & all PANDAS symptoms which at that time was facial tics, vocal tics, emotional lability, mild OCD. Then she went to kindergarten 6 months later & then come December there was chronic strep in her classroom. She was doing well, I did not have her on a prophylaxis ABX & she did well until MArch of this year when her sister got a strep infection on the skin. This was the kick-off for where we are currently. Her doctor did a round of Clindamycin again (I can't recall the dose) but this time it did test her negative for strep but did not take away all the PANDAS symptoms. Witrhin a few weeks, more strep in her classroom and she came home one day with obvious choreiform movements. I asked the ped. to start her on Azithromycin knowing it had been successful with kids here (If I recall the dose was 200mg). This worked getting rid of maybe 75% of the syptoms, particularly the choreiform movements, but she had alot of hand tics at that time. We then saw Dr B for the first time. He switched her to Augmentin ES 600 mg twice daily (same as your son. SHe's nearly 6, 50 lbs. She's been on that dose since June 10th. She is 95% better. Dr. B suggested keeping her on it another month & then we'll re-evaluate for reductionof the dose longer term. Anyhow, I think the key is that every child responds different to ABX so it may be about trying a different one. I did learn my lesson though, my daughter will stay on a prophylaxis ABX for some time. I wil not allow her to go through another resurgence of PANDAS. I only pray that the ABX will be enough for her in the long term. At this point IVIG is not needed, but I hope that it stays that way.

Edited March 23, 2012 by cab40

[cab40]

Welcome!

 

Here's a recent thread on Augmentin ES vs XR http://www.latitudes.org/forums/index.php?showtopic=8984&start=0&p=74841&hl="augmentin%20es"&fromsearch=1entry74841

 

Azithromycin was a better antibiotic for us (than Augmentin--but that was over 2 years ago, and we didn't do the high Saving Sammy doses). My dd has been on Azith. 250mg/day for over 2 years (started when she was 43 pounds, now is 62). Last year, when we tried to go down to 125mg/day we noticed symptoms increasing. So, whatever antibiotic is used, dose is also important.

 

The most popular abs on this forum are Augmentin (usually xr) and Azithromycin.

 

Re dogs: many find it easier/cheaper to just put the dogs on antibiotics (vs. testing).

 

 

thank you for the GREAT links!! Chris in AZ

Edited March 23, 2012 by cab40