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I'm a PANS/Neuroinflammation mom of 2. AMA!
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amother




Junglegreen
 

Post Wed, Jul 14 2021, 7:25 am
There are so many ideas and suggestions around and when people are desperate they are willing to try and do anything. Are there any ideas out there that any moms can say really worked! Please share those!
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amother




Powderblue
 

Post Wed, Jul 14 2021, 8:31 am
amother [ Junglegreen ] wrote:
There are so many ideas and suggestions around and when people are desperate they are willing to try and do anything. Are there any ideas out there that any moms can say really worked! Please share those!

Yes. Plasma pheresis and ivig. As well as antibiotics and some vitamins
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amother




Hyssop
 

Post Wed, Jul 14 2021, 9:22 am
amother [ Nemesia ] wrote:
yes, I'm on that group. I was on other pandas/pans groups and kept seeing RN suggested and when I saw so many were talking about positive results I had to give it a try. I hope it works for us both!
Same! Now I’m curious to know who you are.
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amother




Hyssop
 

Post Wed, Jul 14 2021, 9:22 am
amother [ Junglegreen ] wrote:
There are so many ideas and suggestions around and when people are desperate they are willing to try and do anything. Are there any ideas out there that any moms can say really worked! Please share those!
Antibiotics work really really well for us. So long as we’re on them.
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amother




DarkKhaki
 

Post Wed, Jul 14 2021, 9:39 am
amother [ Hyssop ] wrote:
Antibiotics work really really well for us. So long as we’re on them.

Why don't you stay on them then?
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amother




Hyssop
 

Post Wed, Jul 14 2021, 9:40 am
amother [ DarkKhaki ] wrote:
Why don't you stay on them then?
Our pediatrician doesn’t want to prescribe them for us anymore Mad
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amother




Nemesia
 

Post Thu, Jul 15 2021, 12:38 am
amother [ Hyssop ] wrote:
Same! Now I’m curious to know who you are.
I'm not really active on it. I'm just a lurker Smile
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amother




Hyssop
 

Post Thu, Sep 23 2021, 1:10 pm
amother [ Nemesia ] wrote:
I'm not really active on it. I'm just a lurker Smile
Just felt like updating, we had some very measurable gains with our third remedy, I cut my pandas fingernails before yt for the first time in about 4 years. She is a compulsive nail biter since she’s 2 and the last time I cut them was when she first went on antibiotics for pandas about a year after her onset when we finally realized what was going on. After that time, she reverted and nothing we tried since then made a dent in the nail biting until now. Aside for that, she was also much much more agreeable in general, but of course that’s harder to measure and quantify. How’s it going with you?
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