PANDAS symtom came back every 4 weeks

[yanni]

My son is 12 yrs old and he is PANDA kid. 3 yrs ago without PANDAS diagons the PANDAS symtom came back every 4 weeks, After Switchign defferent antibiotic now he is taking Augmentin, the symtom decresed but still came back every 4 weeks. Any advise or experinces? For IVIG, What is best doseage, Middle dose for 5 or 6 months? or low dose for longer period?

He tried Panicilin, Azithromycin, Amoxicilin, Now is on Augmentin, Done one time high dose IVIG, Augmentin seems doesn't work any more, Any experience with Keflex and doseage?For IVIG, What is best doseage, Middle dose for 5 or 6 months? or low dose for longer period?My son devolops very high oral stim and agressive behavior after got PANDAS even taking antibiotic , Does those bahavior wil go away if find right antibitic? or some other medicine should address this? Sorry for so many questions. Any advise will be highly appreciated.

[Chemar]

hi and welcome

moving your post up so others can reply

[laure]

My son is 12 yrs old and he is PANDA kid. 3 yrs ago without PANDAS diagons the PANDAS symtom came back every 4 weeks, After Switchign defferent antibiotic now he is taking Augmentin, the symtom decresed but still came back every 4 weeks. Any advise or experinces? For IVIG, What is best doseage, Middle dose for 5 or 6 months? or low dose for longer period?

He tried Panicilin, Azithromycin, Amoxicilin, Now is on Augmentin, Done one time high dose IVIG, Augmentin seems doesn't work any more, Any experience with Keflex and doseage?For IVIG, What is best doseage, Middle dose for 5 or 6 months? or low dose for longer period?My son devolops very high oral stim and agressive behavior after got PANDAS even taking antibiotic , Does those bahavior wil go away if find right antibitic? or some other medicine should address this? Sorry for so many questions. Any advise will be highly appreciated.

 

 

Hi Yanni,

Sorry to hear about your problems. Perhaps this has been done, but have you had him tested for lyme disease? Lyme is known for causing a "herx" every 4 weeks in many people, I think it has to do with cycles of the spirochetes. My daughter age 11 was also a PANDAS kid until Igenex tests came back positive for lyme, bartonella, and then she was later diagnosed with babesia. Coinfections common with tick bites. Since being treated aggressively for lyme, she has made huge strides. We narrowly avoided IVIG and PEX, stumbling onto this diagnosis just in time. Before that she did test high for anti dnase B titers, but we now know that her PANDAS was not clearing due to lyme underlying. So, just thought you might look into that further, or again if it has been awhile.

[tpotter]

My son is 12 yrs old and he is PANDA kid. 3 yrs ago without PANDAS diagons the PANDAS symtom came back every 4 weeks, After Switchign defferent antibiotic now he is taking Augmentin, the symtom decresed but still came back every 4 weeks. Any advise or experinces? For IVIG, What is best doseage, Middle dose for 5 or 6 months? or low dose for longer period?

He tried Panicilin, Azithromycin, Amoxicilin, Now is on Augmentin, Done one time high dose IVIG, Augmentin seems doesn't work any more, Any experience with Keflex and doseage?For IVIG, What is best doseage, Middle dose for 5 or 6 months? or low dose for longer period?My son devolops very high oral stim and agressive behavior after got PANDAS even taking antibiotic , Does those bahavior wil go away if find right antibitic? or some other medicine should address this? Sorry for so many questions. Any advise will be highly appreciated.

 

 

Hi Yanni,

Sorry to hear about your problems. Perhaps this has been done, but have you had him tested for lyme disease? Lyme is known for causing a "herx" every 4 weeks in many people, I think it has to do with cycles of the spirochetes. My daughter age 11 was also a PANDAS kid until Igenex tests came back positive for lyme, bartonella, and then she was later diagnosed with babesia. Coinfections common with tick bites. Since being treated aggressively for lyme, she has made huge strides. We narrowly avoided IVIG and PEX, stumbling onto this diagnosis just in time. Before that she did test high for anti dnase B titers, but we now know that her PANDAS was not clearing due to lyme underlying. So, just thought you might look into that further, or again if it has been awhile.

 

 

I am going to also back what laure said. My DS was also getting "sick" every 3 weeks. Since finding out that he also has Lyme, bartonella, erlichiosis and babesia (strep is also a big issue though), we have been treating aggressively. Unfortunately, he still gets sick often, but more because he keeps getting re-exposed to strep, mycoplasma pneumonia and other things. But, the lyme and co-infections are not totally cleared from his body (it can take 1 1/2 to 2 years or more for really bad infections. Unlike Laure, though, we have done PEX and multiple IVIG's; we even did about 6 IVIG's after finding out that he had Lyme and co-infections, because we decided that we wanted to help the immune system fight it. I am not sorry we have done that, but we are also treating aggressively with multiple antibiotics (a Lyme specialist called an LLMD helps us with that), and we have also been using a lot of supplements (like vitamins, herbs, etc.)

 

I would encourage you to look for other infections in addition to the strep, because if you don't clear all infections, you can't clear the symptoms. This is why the name is being changed to PANS, rather than PANDAS, because we now know that it's not only strep that can cause this disorder.

 

You may want to look at that Lyme forum for additional information, as well.