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Possible PANDAS


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Kaplan went well ! He is very informative and compassionate ! He wants to see if my son is a carrier, so my son will be tested next week after his antibiotics are done in 4 days. If he is a carrier I'm assuming we will be talking to him again. Its hard because if my son is a carrier and he gets treated and all the symptoms, tics go away then what would he call it :) ??????

 

A fluke ?

 

I'm open minded to both sides of this controversy.

 

He is very concerned about my son, and took two hours listening to my sons health history, he took notes, and is emailing my sons primary who has treated one case of pandas before. Dr. Kaplan knows our primary doctor.

 

He did mention a psychiatrist at the university of minnesotas childrens hospital, Gail Bernstein who might treat pandas ...I think does. He said they kind of work together ..

 

My confusion is.. If my son gets treated do some of these doctors who don't have hard scientific evidence just call it treating strep, not pandas? Kaplan has studied strep for years.

 

My son has allergy testing, another strep test, and a new neurologist all next week, I feel like we have a good game plan now. Relieved.

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Kaplan went well ! He is very informative and compassionate ! He wants to see if my son is a carrier, so my son will be tested next week after his antibiotics are done in 4 days. If he is a carrier I'm assuming we will be talking to him again. Its hard because if my son is a carrier and he gets treated and all the symptoms, tics go away then what would he call it :) ??????

 

A fluke ?

 

I'm open minded to both sides of this controversy.

 

He is very concerned about my son, and took two hours listening to my sons health history, he took notes, and is emailing my sons primary who has treated one case of pandas before. Dr. Kaplan knows our primary doctor.

 

He did mention a psychiatrist at the university of minnesotas childrens hospital, Gail Bernstein who might treat pandas ...I think does. He said they kind of work together ..

 

My confusion is.. If my son gets treated do some of these doctors who don't have hard scientific evidence just call it treating strep, not pandas? Kaplan has studied strep for years.

 

My son has allergy testing, another strep test, and a new neurologist all next week, I feel like we have a good game plan now. Relieved.

 

Is Dr. Kaplan thinking that strep carriers don't get PANDAS? I don't know if that is what he is thinking, or if he is just interested in strep carriers. IMHO, strep carriers (b/c they don't get symptoms, and don't get treated) are almost MORE likely to get PANDAS. Dr. Kaplan did tell dh that the carrier state is an enigma and may not be as benign as once thought.

 

Actually, he talked to dh on the phone a couple of years ago. He was nice and spent a long time talking. He would have considered my PANDAS dd to be a carrier (b/c she still cultured positive for strep 2 mo. after FEVER/behavior change).

 

 

 

Your son may have PANDAS that is/was triggered by (and continues to be triggered by) strep. But, it will be important to address the Lyme. Until the LYme (or any other chronic infection, mycoplasma, etc) is addressed, he won't fully recover.

 

At the IOCDF conference, someone asked Sue Swedo about a PANDAS child who didn't respond to IVIG...her recommendation was to test for LYme.

 

I would also recommend testing (throat cultures) other familiy members for strep. Are there siblings?

 

Anyway, I'm glad you got to meet with Dr. Kaplan, maybe if more PANDAS kids saw him, they'd turn him into a believer?

 

BTW, carriers can clear strep, it's just more difficult.

 

My non-PANDAS dd is also a carrier...she didn't clear on Augmentin, but she cleared on Azithromycin. My ped wanted to try Clindamycin on her, but she was 4 at the time and took liquid. The Clindamycin tasted too bad, so we did the Azith. and it worked.

 

My PANDAS dd (probably also a carrier) didn't really turn around until we cleared her sister and also put PANDAS dd on Azith. (it was the 4th antibiotic we tried). We started the Ibuprofen when we started the Azith. I think it really helped get her better, get the inflammation down. IMHO the 2 meds were somewhat synergistic.

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  • 3 weeks later...

All my sons 10 tests came back normal ! Everything is normal...now I'm really confused

 

We are waiting for the heavy metal screen results

 

I recently removed all electrical from his room, and bought an all cotton bed, major improvements

 

That info is posted under "night time" on the TS and tic disoder forum

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All my sons 10 tests came back normal ! Everything is normal...now I'm really confused

 

We are waiting for the heavy metal screen results

 

I recently removed all electrical from his room, and bought an all cotton bed, major improvements

 

That info is posted under "night time" on the TS and tic disoder forum

What 10 tests did they run and do you have a copy of the results or did the doc just tell you its normal? It is common for doctors to report "normal" on labs, only to find out when you see the report that its not all normal. On the other hand, it does happen that PANDAS kids can look normal on paper, but still have an immune problem that causes an abnormal response to infection.

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All my sons 10 tests came back normal ! Everything is normal...now I'm really confused

 

We are waiting for the heavy metal screen results

 

I recently removed all electrical from his room, and bought an all cotton bed, major improvements

 

That info is posted under "night time" on the TS and tic disoder forum

What 10 tests did they run and do you have a copy of the results or did the doc just tell you its normal? It is common for doctors to report "normal" on labs, only to find out when you see the report that its not all normal. On the other hand, it does happen that PANDAS kids can look normal on paper, but still have an immune problem that causes an abnormal response to infection.

 

Agreed!

 

Also What tests did he do on your son to determine of he was a carrier?

 

Also with your history of tick exposure, I would really encourage you to test for Lyme and other tick diseases.

Edited by EAMom
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