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We are headed to our doctor this afternoon. After reading Saving Sammy I am determined to have his doctor run a blood test and give him a round of antibiotics to see if it has any effect. I emailed Dr. K with our case history and he felt pretty sure it is PANDAS. Now I just have to convince his doctor.

 

I've been sure he's had PANDAS since he started showing symptoms but neither his doctor or I knew much about it. In His symptoms have waxed and waned. I noticed in September everything was much worse when his brother had strep but I didn't have him tested. I mentioned this to our doctor in October, when his symptoms had already gotten much better. No surprise his throat culture came back negative. Looking back I realize that the only time he has been completely asymptomatic was while he was on antibiotics after he had his tonsils out a year ago. We thought it was just the tonsil removal. The symptoms came back again within a month.

 

Anyway, I'm so hopeful and nervous all at the same time.

 

I'll let you all know how it turns out!

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Welcome.

 

When was the last time you had a rapid and culture done on him? If it's been awhile, do that too. If either come back +, it's good to have that in his records and you will get antibiotics faster and easier and don't forget to do simple things like changing a toothbrush after being on abx for 24 hours.

 

What antibiotic did he improve on?

 

Best of luck at the doctor's!

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Thanks Vicki. I didn't think of the toothbrush!

 

We did have a throat culture done earlier this week. It came back negative. I had my other son and myself tested as well. Both negative. I didn't expect it to be positive because he isn't in one of his bad periods, just his normal everyday tics and OCD.

 

We went to the doctor today because I finished reading Saving Sammy and wanted to talk to his doctor about it. He's had OCD/TS for 2 years now and the only time he has been totally asymptomatic was during the holidays in 2009 immediately following his tonsillectomy and a round of antibiotics both before and after his operation. By February he was as bad as ever and we started him on Zoloft to see if it helped (not so much). After reviewing my journals I realized that things ease up quite a bit during the summer and then get worse as he heads back to school. This school year his brother had strep within a week and I noticed my PANDAS son's symptoms were the worst ever. Within a month he was back to not so bad. His doctor did a throat culture in October (when he was already much better) and it was negative. I don't think he's catching the strep now that his tonsils are out. I just think his antibodies go nuts around others with strep. I emailed Dr. K to see what he thought and he agreed that PANDAS was likely.

 

Fast forward to this afternoon. His doctor was very open and more than willing to admit that parents these days are more knowledgeable about this stuff because they have the resources and motivation to research things themselves. He did some quick research himself, told me that long-term antibiotic use wasn't recommended by the NIMH, which I told him I knew. I explained that several doctors are seeing success though and that I want to see what a round would do. He had his blood drawn for the tests and gave us a 10 day round of Augmentin 875mg 2x day. He said he couldn't find an XR version at that dose. We'll meet back in two weeks to discuss the results of the tests as well as what I record in my journal.

 

I recall hearing that the XR version is easier on the stomach. Is that correct? I plan to have him take it with food and milk and take a Culturelle right after school. Is that enough, or are we in for a round of stomach problems? His doctor felt better about the Augmentin than he did Zithromax.

 

I'm hoping to see a difference quickly to confirm what I think I'm seeing.

 

I'm so glad his doctor is willing to entertain the idea that this might work! He even said he was excited to see what he could learn. I hope he continues to be so open!

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With my son's last incapacitating exacerbation in mid October his throat culture came back pos. for non group A strep but his ASO titer was 1,014. He has had negative cultures before with elevated ASO titers. I decided I'm not giving the culture too much weight. I think Strep can harbor anywhere in the body. I think Beth Maloney mentions that too in "Saving Sammy". Before my son's T&A in mid Dec. he was on Augmentin 2000XR for 7 weeks without any improvement. Post T&A he was on Clindamycin for 15 days and was doing great 13 days post T&A. He now is on 500mg Azith 4 times a week. He seems to be maintaining OK on that although he said his throat hurt a little tonight and is doing more compulsions tonight than I've seen lately. I feel Clindamycin worked the best but I don't want to continue with it prophylactic because of potential, bad side effects.

 

Thanks Vicki. I didn't think of the toothbrush!

 

We did have a throat culture done earlier this week. It came back negative. I had my other son and myself tested as well. Both negative. I didn't expect it to be positive because he isn't in one of his bad periods, just his normal everyday tics and OCD.

 

We went to the doctor today because I finished reading Saving Sammy and wanted to talk to his doctor about it. He's had OCD/TS for 2 years now and the only time he has been totally asymptomatic was during the holidays in 2009 immediately following his tonsillectomy and a round of antibiotics both before and after his operation. By February he was as bad as ever and we started him on Zoloft to see if it helped (not so much). After reviewing my journals I realized that things ease up quite a bit during the summer and then get worse as he heads back to school. This school year his brother had strep within a week and I noticed my PANDAS son's symptoms were the worst ever. Within a month he was back to not so bad. His doctor did a throat culture in October (when he was already much better) and it was negative. I don't think he's catching the strep now that his tonsils are out. I just think his antibodies go nuts around others with strep. I emailed Dr. K to see what he thought and he agreed that PANDAS was likely.

 

Fast forward to this afternoon. His doctor was very open and more than willing to admit that parents these days are more knowledgeable about this stuff because they have the resources and motivation to research things themselves. He did some quick research himself, told me that long-term antibiotic use wasn't recommended by the NIMH, which I told him I knew. I explained that several doctors are seeing success though and that I want to see what a round would do. He had his blood drawn for the tests and gave us a 10 day round of Augmentin 875mg 2x day. He said he couldn't find an XR version at that dose. We'll meet back in two weeks to discuss the results of the tests as well as what I record in my journal.

 

I recall hearing that the XR version is easier on the stomach. Is that correct? I plan to have him take it with food and milk and take a Culturelle right after school. Is that enough, or are we in for a round of stomach problems? His doctor felt better about the Augmentin than he did Zithromax.

 

I'm hoping to see a difference quickly to confirm what I think I'm seeing.

 

I'm so glad his doctor is willing to entertain the idea that this might work! He even said he was excited to see what he could learn. I hope he continues to be so open!

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My son hasn't taken Augmentin XR so someone else would be better at answering questions about it. here's a good thread about Augmentin XR

 

http://www.latitudes.org/forums/index.php?...hl=augmentin+xr

 

It seems a good amount of kids on this forum are on the antibiotic. If you have specific questions about it, a new thread devoted to it would probably get more answers.

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When my son was dx, they looked mainly at his past medical history and did not focus on his current blood work or test results. Don't forget other strep symptoms... my son would break out in the even rash all over his chest/tummy and had lots of stomach aches. Our ped neuro also showed me his peeling skin at the tips of his fingers which she said was common strep symptom (who knew?). Look at the entire picture... a positive strep test is not the smoking gun :)

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