IVIG follow up with PCP

[BriCanady]

My son had an IVIG in mid November due rapid onset of Pandas. We were able to find a neurologist in New Orleans , who believed and wanted to help our son. Our insurance company covered the IVIG, but my son's "diagnosis" on paper was ADEM. His neurologist fought our insurance company to get the procedure covered. My son did suffer with asecptic meningitis afterwards, which was treated with a steroid for 5 days . During this time he was extremely moody, had many tics etc...but by day 3 , he could write again....

My question is...since we believe his Pandas/Pitands was viral, would he still benefit from a prolonged antibiotic? If so, could you please post any information, I can take to the PCP to help him understand the importance of this....BTW-follow up with neuro isn't until late December....she wanted to give it a month , to "see" what happens...

Thanks, Bri

[EAMom]

Absolutely!

 

Even if this IVIG "cured" (or "remission"...whatever you want to call it) your son of PANDAS/Pitands, another strep infection could "set the wheels of PANDAS in motion again"....starting the cycle all over again. It is critical to keep these kids free of strep exposure (and also viruses to the best of your ability) while the immune system recovers in the months/year post IVIG.

 

Even longer term: IMO PANDAS kids should be an abs until at least early adulthood (in one of Swedo's lectures, she says they don't actually know how long they should stay on abs...just as with RF they keep upping the recommended age of abs). There was a mom who posted a month or two ago...her child was on abs for 1 year post IVIG (and doing well, per K.'s protocol). Then 2 years after stopping the abs, after a series of infections, the PANDAS came back and they needed to repeat the IVIG. Now they are planning to do the abs much longer this time.

 

It is an absolute shame to go through IVIG (the expense, the battle with docs, the insurance co.) only to leave your child vunerable to another attack.

 

since we believe his Pandas/Pitands was viral, would he still benefit from a prolonged antibiotic

Strep is what starts the PANDAS...but subsequent exacerbations can be caused by viruses (as in your son's case). It doesn't matter if the most current exacerbation (which caused you to seek treatment) was caused by a virus..strep is still the original cause of the immune dysfunction. You need to protect your son from strep infection (and exposure) post IVIG.

 

Did you have bloodwork with Dr. Cunningham before IVIG?

[sf_mom]

I agree with every thing EAMom says. We have our son on a homeopathic anti-viral http://syntrion.eu/usa/products/syimmune-tablets and daily azithromycin 250 m.g. 5 years old and 45 pounds.

[mama2alex]

I agree with every thing EAMom says. We have our son on a homeopathic anti-viral http://syntrion.eu/usa/products/syimmune-tablets and daily azithromycin 250 m.g. 5 years old and 45 pounds.

 

SFMom,

 

You may have told me before, but I can't remember - what's the homeopathic antiviral? Our son reacts to viruses as well.

[sf_mom]

It has Penicillium notatum 4X.... the company is out of Germany. My friend swears by it for colds and it was recommended to her by a homeopathic Dr. after her daughter had seizure from a high fever. Take it twice daily, at onset of cold or fever bump to 3 times daily. Its not cheap but at this point its a heck of lot cheaper than a Dr. visit. We see Dr. Lloyd tomorrow.

 

- Wendy

 

 

I agree with every thing EAMom says. We have our son on a homeopathic anti-viral http://syntrion.eu/usa/products/syimmune-tablets and daily azithromycin 250 m.g. 5 years old and 45 pounds.

 

SFMom,

 

You may have told me before, but I can't remember - what's the homeopathic antiviral? Our son reacts to viruses as well.