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Hi,

 

We just got initial results on my daughter's Cam Kinase II levels. They were 189. So it looks like we are officially part of the PANDAS club.

 

I want to get our pediatrician to prescribe another round of antibiotics and I'm wondering if anyone can give advice. I read the FAQ's about different abx working bettter for intra cellular strains of strep vs. extra cellular. But how do you know which your child has?

 

A little history. First, my daughter is allergic to amoxycillan. So I think the eliminates Augmentin from the choices. Am I right?

 

Second, she started/finished a 14 day dose of Omnicef between the middle and end of February. The dose was slighly above what is typically recommended for her age/weight (7 years old 52lbs).

 

I appreciate any thoughts. Today is Saturday, so I know it's going to be a little difficult gettting medical help. But I want to start my daughter on abx a.s.a.p.

 

Thanks,

Kara

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Welcome to the club. It seems like the most successful antibiotics that are used on this forum is Augmentin and Zithromax. There are a few who have also cited success with Kelfex and a couple on Omnicef (maybe only one on Omicef?). You said your child is allergic to Augmentin, so I'd discuss Zith with your doctor. Zith can get to intracellular strep.

 

For others reading this...some kids do get better on amoxicillin and penicillin but I haven't read too many that have.

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We're new to this so I can't offer advice but I was just curious - how long did it take to get your results back? We are considering doing the test for my son.

 

Justine

 

Hi,

 

We just got initial results on my daughter's Cam Kinase II levels. They were 189. So it looks like we are officially part of the PANDAS club.

 

 

Thanks,

Kara

Edited by justinekno
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My 7 yr old daughter (47lbs) currently takes 150mg of Omnicef 2X/day.

 

She is also on week four of a 5 week course of prednisone (currently 7.5mg every other day). She really is doing great.

 

Azithromycin is also a great antibiotic that many PANDAS children do well with.

 

Good luck

~Karen

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We had her blood drawn on Monday, March 15 and fed ex'd the sample to them. They received it Tuesday. So it was essentially 2 full work weeks to get the initial results for one of the tests they run. I'm still waiting for the second test and a formal report.

 

Kara

 

We're new to this so I can't offer advice but I was just curious - how long did it take to get your results back? We are considering doing the test for my son.

 

Justine

 

Hi,

 

We just got initial results on my daughter's Cam Kinase II levels. They were 189. So it looks like we are officially part of the PANDAS club.

 

 

Thanks,

Kara

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Thanks, Karen. Could you share with me your Doctor's name and where s/he is located?

Kara

 

My 7 yr old daughter (47lbs) currently takes 150mg of Omnicef 2X/day.

 

She is also on week four of a 5 week course of prednisone (currently 7.5mg every other day). She really is doing great.

 

Azithromycin is also a great antibiotic that many PANDAS children do well with.

 

Good luck

~Karen

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Also, consider a steroid burst. They are usually done for several weeks, and even into 1 month. Very effective, and it is typical to use it on autoimmune disorders. If your doc isn't sure about how to do the steroid burst. Also, where are you located, and we different people on this forum can give you different docs names if the antibiotics/steroid burst isn't effective.

 

Just curious, how long has your child been ill?

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Thanks for your reply. We are in Salem, MA - 15 miles north of Boston.

I'm going to say she started exhibiting her OCD symptoms early fall - lots of questioning, " will this make me sick, does that person have the swine flu, etc. It became crystal clear at the end of November when her hands were raw with hand washing, she was holding her saliva and she couldn't get dressed because she was afraid of germs on her clothing. So in the 6 - 9 month range.

 

 

Also, consider a steroid burst. They are usually done for several weeks, and even into 1 month. Very effective, and it is typical to use it on autoimmune disorders. If your doc isn't sure about how to do the steroid burst. Also, where are you located, and we different people on this forum can give you different docs names if the antibiotics/steroid burst isn't effective.

 

Just curious, how long has your child been ill?

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Thanks, Karen. Could you share with me your Doctor's name and where s/he is located?

Kara

 

My 7 yr old daughter (47lbs) currently takes 150mg of Omnicef 2X/day.

 

She is also on week four of a 5 week course of prednisone (currently 7.5mg every other day). She really is doing great.

 

Azithromycin is also a great antibiotic that many PANDAS children do well with.

 

Good luck

~Karen

 

We have to travel about 3 hours to see Dr. Latimer in Bethesda, MD. Our pediatric practice is really good too, but I get the impression that they are relieved that we have her being treated by a PANDAS expert.

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We tried Augmentin and saw some initial improvements but DS still came down with an ear infection and a sinus infection on a pretty high dose. After going through his medical record I realized that he has had some other times where he came down with other infections while taking it.

 

We then tried Omnicef. It did kick the ear infection but didn't touch the sinuses. We also had the absolute worst 10 days with daily emotional meltdowns and depression accompanied with rage. Prior to that he was pretty stable and when we went off we started to see him stabilize again.

 

Then we tried Biaxin, which is clarithromyacin, a cousin to azithromyacin. With this we have seen remarkable improvements very quickly. His sinuses cleared up in about 24 hours. He's been taking it about 3 weeks now. His mood is soooooo much better and there is a noticeable difference in the amount of OCD and tics he is experiencing. I'd say about 50%. He seems to either have allergies or a cold right now and does have a corresponding increase in symptoms, but it is minor. The last cold he caught at the beginning of February put us into a full blown exacerbation, so I think the Biaxin is holding off whatever tends to grow in his ears and sinuses (my guess strep).

 

We haven't done the test yet, but I plan to get the blood drawn this coming week and send it off. There isn't much doubt in my mind at this point if it is PANDAS or not, but having the test results will give us more information I guess.

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  • 3 weeks later...

It seems my ds may be allergic to aug as well...

but per Dr t and Dan i in fl (who has pandas kids and access to ivig)...we may retry..as the reaction (hives/muscle paint)7-10 days in may be from die off...we will see after a few more tests....But the aug was working beautifully!!!

 

 

 

Hi,

 

We just got initial results on my daughter's Cam Kinase II levels. They were 189. So it looks like we are officially part of the PANDAS club.

 

I want to get our pediatrician to prescribe another round of antibiotics and I'm wondering if anyone can give advice. I read the FAQ's about different abx working bettter for intra cellular strains of strep vs. extra cellular. But how do you know which your child has?

 

A little history. First, my daughter is allergic to amoxycillan. So I think the eliminates Augmentin from the choices. Am I right?

 

Second, she started/finished a 14 day dose of Omnicef between the middle and end of February. The dose was slighly above what is typically recommended for her age/weight (7 years old 52lbs).

 

I appreciate any thoughts. Today is Saturday, so I know it's going to be a little difficult gettting medical help. But I want to start my daughter on abx a.s.a.p.

 

Thanks,

Kara

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Hi,

 

We just got initial results on my daughter's Cam Kinase II levels. They were 189. So it looks like we are officially part of the PANDAS club.

 

I want to get our pediatrician to prescribe another round of antibiotics and I'm wondering if anyone can give advice. I read the FAQ's about different abx working bettter for intra cellular strains of strep vs. extra cellular. But how do you know which your child has?

 

A little history. First, my daughter is allergic to amoxycillan. So I think the eliminates Augmentin from the choices. Am I right?

 

Second, she started/finished a 14 day dose of Omnicef between the middle and end of February. The dose was slighly above what is typically recommended for her age/weight (7 years old 52lbs).

 

I appreciate any thoughts. Today is Saturday, so I know it's going to be a little difficult gettting medical help. But I want to start my daughter on abx a.s.a.p.

 

Thanks,

Kara

 

How long did it take you to get results back? We submitted ours last Thursday

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How long did it take you to get results back? We submitted ours last Thursday

 

We had her blood drawn on Monday, March 15 and fed ex'd the sample to them. They received it Tuesday. We got an email from them the following Friday. So it was essentially 2 full work weeks to get the initial results for the Cam Kinase II test they run.

 

Last week we received an email with the results for the other tests they run. They were all normal. I'm not quite sure what they tested for (something other than the Cam Kinase II) and am still waiting for the formal report which, from what I understand, should include some interpretation.

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