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My 8 year old daughter woke up Thursday 12-22-2011 with textbook PANDAS symptoms. Subsequent lab results showed 12/26/2011 ASO-770, 12/28/2011 ASO-691. She began Augmentin ES on 12/28 but we have yet to see any relief as of 1/2/2012. We have heard that Augmentin XR is supposed to have better results in PANDAS and our Dr. is open but unsure of the dosage for a 55 pound child. Any help would be greatly appreciated!

 

She also showed elevations in DNaseB, EBV (just below positive level), and HSV. Does anyone know how these relate to PANDAS?

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10 days ago at this time, I had never heard of PANDAS. Now, I feel it is all I know. My 8.5 year old daughter went to bed last Wednesday (12-21-2011) night the most sweet-hearted, happy-go-lucky kid you have ever seen. She was social, smart, and outgoing. Thursday morning she woke up with unbearable intrusive thoughts. Her thoughts basically terrorize her and have been ever since. She confesses all day long about thoughts of violent attacks on her, her family, and God. She also has bizarre thoughts that are involving sexual taboos. A couple days prior to this she developed a minor URI/cold. Several of her friends have also had strep in the past 10 days.

 

Her ASO on 12-26-2011 was 770 and on 12-28 she had several more labs drawn. Those results showed ASO 770, Anti-DNase B over 1000, high HSV and slightly high EBV. We have been on Aumentin for 5 days and have not seen improvement.

 

Our Dr. is open to prescribing Augmentin XR but was unsure of the dose for a 55 year old child. I was wondering if anyone had any suggestions as we are up against the clock getting it called in before they close for the day.

 

Thanks in advance-Dean

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Hi Dean

sorry it took a while to get your posts visible, due to our anti-spam procedures. I merged the 2 posts into one thread for you.

 

The members who have PANDAS knowledge will be along soon to answer your questions.

 

all the best to you

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We are switching to Augmentin XR (generic) . We haven't gotten it yet but it shows::  QTY: 5  Amox/clav Er Tab 40 1000/62.5   1000MG

 

My ds is around 60 pounds. The XR comes in 40 packs. This is a 90 day script. So the best I can cypher is he will be getting 1000mg twice a day with this script. Getting frustrated though, as our doc sent the script in to our mail order on Dec 15 to save $ and they haven't filled it yet.

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My son was diagnosed 18 mo ago and he probably weighed around 45-50 lbs. We started on 1800 mgs of augmentin ES which is just the liquid form of XR. He now weighs around 59 lbs and regularly takes 1000mg daily of the pill form (augmentin xr) but I will push him up to treatment dose when I see issues cropping up....that's about 2000 mgs. There are certainly people who use higher doses ...these are regular treatment doses that our pediatrician would prescribe. Some people believe in high dose antibiotics .. Not sure what dosage that would be. Don't give up hope though. It does sometimes take some time. My best advice would be to get to a PANDAS doc if possible.

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I am so sorry to hear about your daughter. I know this is an agonizing, frightening time for your family. Stay strong, you are in the right place and it sounds like you at least have a Doctor who is open and willing to listen. Your ASO & AntiDnase B levels do indicate strep but I am also concerned about the cough that you say she had. If she has Myco p. in addition to strep then the Augmentin will not help. You may consider switching to Zithromax and also getting IgG and IgM titers for Mycoplasma pneumonia. Zithromax often works when other antibiotics don’t. Also, it will cover both strep and myco p. The next thing you need to do is to make an appointment with one of the PANDAS specialist right away. I don’t know where you live but there is a list of physicians on the pinned thread. It is not unusual to have to travel to find a well respected PANDAS expert, but I can assure you it is worth the effort. It isn’t worth wasting your time with other specialist unless they have experience treating PANDAS / PANS patients. We have personally traveled 13 hours to see one of the PANDAS experts. Many on this board have traveled to get the treatment their children so desperately needed. There are some excellent physicians out there who can help you and keep you moving in the right direction. BUT, you have to be pro-active and seek out the appropriate Doctor and always be your daughter’s advocate. You know her better than anyone so always go with what your Mother instinct tells you. Welcome to the board. Please keep us updated on your daughter’s progress. Best of luck.

 

Dedee

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First, it can take time for behaviors to subside even after the start of antibiotic treatment. Second, because your daughter may be dealing with a current virus as well, which will not be effected by antibiotics, you may have additional hurdles that will take time to clear. It's frustrating for parents who see an overnight "on switch" because there isn't necessarily the same "off switch" that has an immediate reversal of symptoms. We're so used to antibiotics taking care of everything in the matter of days. But for PANS, the off switch can often be more like a dimmer switch, where it takes quite some time for things to de-escalate.

 

Second, in terms of the EBV and HSV...50% of kindergartners have antibodies to EBV. 95% of the adult population has had it. Most of us never even know it, because we think it's a mild case of the flu. But sometimes a person gets hit hard and EBV can take months to fight. My daughter contracted it in October and is still struggling with fatigue, sore throat, headache, stiff neck...some days, she feels fine for a good portion of the day. Other days, she can barely get off the couch. We waited a month after her first symptoms because it can take time for the antibodies to show up in the blood work. You may want to re-check the EBV numbers as well as the ASO/Anti DNase in a few weeks. It's the movement of these numbers up or down that are more telling than the actual values. If still high, you may want to discuss an anti-viral medication. There are also natural anti-virals if that is your preference.

 

As for augmentin XR - the pill has a coating which makes it an extended release formula. The pill is 1000 mg/augmentin. When my son was 60#, he could not take 1000mg at one dose, so we were told to split the pill. We later found out that breaking the pill defeated the time release aspect. He still got 1000mg/day, but lost the benefit of the XR. You may be better off with the ES.

 

For the immediate, you may want to get the book What To Do When Your Brain Gets Stuck or What To Do When You Worry Too Much - both are written for school age kids to help them understand OCD and how to regain a sense of control. If you post additional details of her OCD issues (it sounds like her type of OCD is scrupulosity and intrusive thought OCD), there are several parents on the forum who may have excellent coping strategies for you.

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I concur with Dedee...

 

I have two pandas kids. Both initially remitted after a month of daily (250 mg) of zithromax.

 

IMHO when dealing with pandas, you need (at least one) pandas doc. Unfortunately, most have to travel.

 

You need to develop a plan. It is often trial and error, and initially, you probably need to try one new thing, and give it a month, not changing any other variables to see if it is effective.

 

(In my opinion a plan would be: try Augmentin for one month, if not enough improvement, move to zithromax daily for one month, then add a month long prednisone burst, then re evaluate).

 

We have also seen situations where my kids get "healthy", but they hang onto some (not all) of the ocd. At this point we need good erp therapy, to come around to 100%.

 

This is all extremely overwhelming to start; know that you are not alone. You will feel better when you have an experienced doc (or two), a therapist, and a plan.

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Dean --

 

Here's the thing. Augmentin XR carries with it a treatment dose (for sinus infections, etc.) of 4,000 mg./day for adults! That's two of those 1,000 mg. horse pills daily for anyone 90 pounds or over.

 

Meanwhile, the traditional, "Saving Sammy" XR dose for PANDAS has been 2,000 mg./day (one 1,000 mg. pill, twice a day). Now, both Sammy and my son were older (12) and a bit heavier than your child when starting that dose, though I believe that Sammy was very thin for his age (somewhere around 70 pounds) at the time because of all the eating and lack-of-sleep issues associated with his illness.

 

At any rate, given the adult dosage, it seems to me that the 1,000 mg. pill, twice daily, is an acceptable "child-sized" dose, but only your doctor(s) can gauge that accurately. I do believe that some younger/smaller children here on the forum have successfully taken that dose, and I also believe that at least one of the PANDAS docs prescribes this dosage even for younger children.

 

However, the remaining issues may be size (the pill is huge, so swallowing it could be a problem for some kids) and gastro side effects, though we found less gastro distress with the XR than we did with the regular 875 mg. Augmentin, presumably because of the time-release coating and the fact that XR actually has a lower clavulanic acid ratio than does regular Augmentin.

 

Good luck to you! Hang in there!

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Dean --

 

Here's the thing. Augmentin XR carries with it a treatment dose (for sinus infections, etc.) of 4,000 mg./day for adults! That's two of those 1,000 mg. horse pills daily for anyone 90 pounds or over.

 

Meanwhile, the traditional, "Saving Sammy" XR dose for PANDAS has been 2,000 mg./day (one 1,000 mg. pill, twice a day). Now, both Sammy and my son were older (12) and a bit heavier than your child when starting that dose, though I believe that Sammy was very thin for his age (somewhere around 70 pounds) at the time because of all the eating and lack-of-sleep issues associated with his illness.

 

At any rate, given the adult dosage, it seems to me that the 1,000 mg. pill, twice daily, is an acceptable "child-sized" dose, but only your doctor(s) can gauge that accurately. I do believe that some younger/smaller children here on the forum have successfully taken that dose, and I also believe that at least one of the PANDAS docs prescribes this dosage even for younger children.

 

However, the remaining issues may be size (the pill is huge, so swallowing it could be a problem for some kids) and gastro side effects, though we found less gastro distress with the XR than we did with the regular 875 mg. Augmentin, presumably because of the time-release coating and the fact that XR actually has a lower clavulanic acid ratio than does regular Augmentin.

 

Good luck to you! Hang in there!

 

My Dr. called in the one pill twice daily. I hope and pray that it works.

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