What actually is the difference between PANDAS and ASD?

amother

Pearl

Sat, Feb 29 2020, 9:14 pm

amother [ Forestgreen ] wrote:

You can try dr shulman. You need a good 3-6 months before you can try weaning again. But in my (limited) experience, antibiotics are never the complete answer.

Thank you. I know of Dr. Schulman. I would love a natural approach. What’s the step after the antibiotics?

amother

Goldenrod

Sat, Feb 29 2020, 9:17 pm

amother [ Forestgreen ] wrote:

You can try dr shulman. You need a good 3-6 months before you can try weaning again. But in my (limited) experience, antibiotics are never the complete answer.

I completely agree with your belief that antibiotics are never the complete answer. This has been my experience as well.
Amother forestgreen, I wish we could connect somehow.

amother

Forestgreen

Sat, Feb 29 2020, 9:18 pm

amother [ Pearl ] wrote:

Thank you. I know of Dr. Schulman. I would love a natural approach. What’s the step after the antibiotics?

Are you interested in self treating with supplements, diet, herbs etc?

amother

Forestgreen

Sat, Feb 29 2020, 9:21 pm

amother [ Goldenrod ] wrote:

I completely agree with your belief that antibiotics are never the complete answer. This has been my experience as well.
Amother forestgreen, I wish we could connect somehow.

We may already know each other. Are you on any of the pandas fb pages?

amother

Forestgreen

Sat, Feb 29 2020, 9:24 pm

amother [ Sapphire ] wrote:

OT therapist blames it all on underdevelopment primitive reflexes... Can all this be pandas? Can all this be Asd? Is there anyone that CAN differentiate between the two?

Brain inflammation can prevent reflex integration, or cause regression to mimic retained reflexes.

amother

Sapphire

Sat, Feb 29 2020, 9:26 pm

Also this particular child has always gone out of wack whenever I tried a natural supplemental approach. Like when he had the flu and I gave him elderberry. He acted out worse than ever. Literally went crazy those few days from the supplements. And many other times that I’ve tried to give immune boosters. Not so much with regular vitamins. Does that have anything to do with the inflammation in his brain due to pandas? Is that called a herxheimer reaction?

amother

Forestgreen

Sat, Feb 29 2020, 9:27 pm

amother [ Sapphire ] wrote:

How can I join a pandas fb page?

If you're on fb, go to "pandas parents" and request to join

amother

Pearl

Sat, Feb 29 2020, 9:31 pm

amother [ Forestgreen ] wrote:

Are you interested in self treating with supplements, diet, herbs etc?

Yes but I would need guidance and would appreciate having references of people whose children were actually helps by the natural remedies.

amother

Forestgreen

Sat, Feb 29 2020, 9:33 pm

amother [ Sapphire ] wrote:

Lots of pandas parents report adverse reactions to immune boosters. Pandas is a misdirected immune response, so boosting the immune system just increases that misdirected response to the brain. What you want to do in such a case is modulate the immune system, take down inflammation, down regulate the cytokine storm.

amother

Sapphire

Sat, Feb 29 2020, 9:39 pm

amother [ Forestgreen ] wrote:

This makes so much sense. But how do you accomplish the above? You seem very well informed about pandas!

amother

Sapphire

Sat, Feb 29 2020, 9:39 pm

amother [ Pearl ] wrote:

Yes but I would need guidance and would appreciate having references of people whose children were actually helps by the natural remedies.

Same!!

amother

Forestgreen

Sat, Feb 29 2020, 9:48 pm

amother [ Sapphire ] wrote:

This makes so much sense. But how do you accomplish the above? You seem very well informed about pandas!

To take down inflammation we've used magnesium, methylated b vitamins, turmeric, ibuprophen and/or benadryl when we're desperate, quercetin, nettle, thiamine, gluten free dairy free low sugar whole food diet, certain chinese herbs that address neuroinflammation, addressing infections obviously, craniosacral therapy. LDN is supposed to be good for immune modulation, we haven't tried it yet because we haven't found a dr who would prescribe it.

amother

Forestgreen

Sat, Feb 29 2020, 9:50 pm

amother [ Pearl ] wrote:

Yes but I would need guidance and would appreciate having references of people whose children were actually helps by the natural remedies.

One of the trickiest parts of this disease is that it's so individual. What works for one doesn't necessarily work for another. There's a lot of trial and error involved. People can share what they've done, what they've heard other people do, but at the end of the day, you're going to need to become the expert on your child.

amother

Sapphire

Sat, Feb 29 2020, 9:54 pm

amother [ Forestgreen ] wrote:

Who’s guiding you as to what to take when, dosages and all?? I’m new to all this will need guidance as to how to proceed. Also do u monitor progress? Through bloodwork?
So overwhelming omg.. still on the asd bandwagon too...

amother

Sapphire

Sat, Feb 29 2020, 9:56 pm

amother [ OP ] wrote:

People keep saying one looks exactly the same as the other. And they need the same treatment. So what is difference then? And how do we know that PANDAS is actually caused by a virus and it's not just that the person is actually ASD but happened to also get a virus?

OP Did you find the answer to your question?

amother

Goldenrod

Sun, Mar 01 2020, 12:13 am

amother [ Forestgreen ] wrote:

We may already know each other. Are you on any of the pandas fb pages?

All of them!

amother

Sapphire

Sun, Mar 01 2020, 11:09 am

Some questions..
Does anyone know if children with pandas specifically present with more gut issues than what is the norm?
Also regarding any time he does OT exercises he acts out like crazy. I’m trying to understand this.

amother

Blush

Sun, Mar 01 2020, 1:30 pm

Very simple. AFAIK PANDAS is a complication of untreated strep and subsides (sometimes slowly) when the child receives antibiotics.

Autism is a genetic congenital disorder that does not disappear suddenly just because you gave antibiotics.

amother

Forestgreen

Sun, Mar 01 2020, 2:30 pm

amother [ Sapphire ] wrote:

It's common for pandas kids to have gut issues, yes. Some will argue it all begins in the gut! What kinds of OT exercises is he doing? Are they strenuous for him?