I am just wondering if anyone has tried IVIG as a treatment for Panda? I have a son with a Primary immunodeficiency disease and I know that IVIG can be used for many auto immune disorders
We use IVIG for AUtoimmune encephalopathy (specifically Hashimotos Encephalopathy) which is thught to include PANS. It has been helpful. Also we treat with an antibiotic and meds for Adrenal Insufficiency.
Katherine I just read an article about your daughter and was frustrated to hear that your insurance refused to pay for i it. I want to let you know about an alternative. My son’s neurologist treated him with steroid infusions – 5 days, the tapered to weekly, every other week, 3weeks then monthly for a period of about 6 months. She explained that this is does the same as ivig to reduce inflammation and modulate the immune system. Also she did not want us to call his diagnosis “pandas or pans” but rather “autoimmune encephalitis “ in order for insurance to pay for treatment. He is about 90% back to normal after initial symptoms began in the winter ❄️ f 2016. If you have any questions or need more info please feel free thanks contact me!
Please reach out would love to have a support group of moms- I’m also a mom of a 6 year old with pandas, I’m struggling and this story meant so much to me. Please reach out. Thanks!
The Wondering Widow 
Hi. I’m a widow, Mother of two PANS children, too! We should connect. Please email me.
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I am just wondering if anyone has tried IVIG as a treatment for Panda? I have a son with a Primary immunodeficiency disease and I know that IVIG can be used for many auto immune disorders
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We use IVIG for AUtoimmune encephalopathy (specifically Hashimotos Encephalopathy) which is thught to include PANS. It has been helpful. Also we treat with an antibiotic and meds for Adrenal Insufficiency.
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Katherine I just read an article about your daughter and was frustrated to hear that your insurance refused to pay for i it. I want to let you know about an alternative. My son’s neurologist treated him with steroid infusions – 5 days, the tapered to weekly, every other week, 3weeks then monthly for a period of about 6 months. She explained that this is does the same as ivig to reduce inflammation and modulate the immune system. Also she did not want us to call his diagnosis “pandas or pans” but rather “autoimmune encephalitis “ in order for insurance to pay for treatment. He is about 90% back to normal after initial symptoms began in the winter ❄️ f 2016. If you have any questions or need more info please feel free thanks contact me!
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Please reach out would love to have a support group of moms- I’m also a mom of a 6 year old with pandas, I’m struggling and this story meant so much to me. Please reach out. Thanks!
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Jamie, there are a lot of PANDAS/PANS support groups on facebook, both national and regional/state groups.
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Jamie, there are a lot of PANDAS/PANS support groups on facebook, both national and regional/state groups.
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