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amother




Natural
 

Post  Fri, Jul 24 2020, 1:37 pm
amother [ OP ] wrote:
yes that's the plan for the month of detox.

We are going to have to get a mold test. We might do it ourselves with mycometrics. When I called "the mold guy" they quoted up to 1k for the initial check, then another couple thousand on the testing, and then the remediation would be on top of that if necessary
definitely do the testing yourself. Remediation is a fortune Crying good for you for being so devoted to uncovering and correcting all possible root causes. I hope your kid has a refuah sheleimah.
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amother




OP
 

Post  Fri, Jul 24 2020, 3:11 pm
I don't fully understand the mold thing though. We don't see mold in our house. If it shows up on testing, how would we even know what/where needs remediation?
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amother




Ivory
 

Post  Sun, Jul 26 2020, 9:31 am
Op,
Can you share the doctors name? Seems like a wonderful on board doc- suspecting pandas in my 8 yo.
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amother




OP
 

Post  Mon, Jul 27 2020, 2:02 am
amother [ Ivory ] wrote:
Op,
Can you share the doctors name? Seems like a wonderful on board doc- suspecting pandas in my 8 yo.


where do you live? I'm not in the tri-state area.
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amother




Ivory
 

Post  Mon, Jul 27 2020, 2:31 am
amother [ OP ] wrote:
where do you live? I'm not in the tri-state area.

Does this dr do telehealth so we can maybe do a consult?
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amother




Natural
 

Post  Mon, Jul 27 2020, 10:04 am
amother [ OP ] wrote:
I don't fully understand the mold thing though. We don't see mold in our house. If it shows up on testing, how would we even know what/where needs remediation?
I don’t know. I would join a mold illness group on Facebook.
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amother




Salmon
 

Post  Mon, Jul 27 2020, 10:46 am
amother [ OP ] wrote:
and last question before shabbos Smile what anti-inflammatory does your son take? Also did they give anything to build up the immune system to prevent future "attacks"?


Only seeing this thread now. My son was on zithromax for about 8 months. Then we continued w turmeric. Its in a jelly form . its from company flamingo. Dr Susan Schulman recommended this once the strept titers showed normal #s, but he still stuttered. (Thats his reaction to the pandas). Bh hes been on turmeric over a year. The only time he stutters is when he has strept.
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amother




Natural
 

Post  Mon, Jul 27 2020, 1:59 pm
amother [ Salmon ] wrote:
Only seeing this thread now. My son was on zithromax for about 8 months. Then we continued w turmeric. Its in a jelly form . its from company flamingo. Dr Susan Schulman recommended this once the strept titers showed normal #s, but he still stuttered. (Thats his reaction to the pandas). Bh hes been on turmeric over a year. The only time he stutters is when he has strept.
does his stutter go away with a regular round of antibiotics now? Does he really have no other flare symptoms? What were his symptoms at onset?
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amother




Salmon
 

Post  Mon, Jul 27 2020, 2:26 pm
amother [ Natural ] wrote:
does his stutter go away with a regular round of antibiotics now? Does he really have no other flare symptoms? What were his symptoms at onset?


His initial symptom was also a stutter. Now hes bh perfect. As soon as he started meds his stutter went away.. Prob about 24-48 hours
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amother




OP
 

Post  Tue, Jul 28 2020, 5:34 am
amother [ Ivory ] wrote:
Does this dr do telehealth so we can maybe do a consult?


no sorry, on her email signature it says she only practices in the state she lives in.
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amother




Black
 

Post  Fri, Jul 31 2020, 2:01 am
Positive IGG with negative IGM indicates past infection, not current for Lyme. That will not be helped with abx as there is no current infection.

If you still want to cover for Lyme and pandas, augmentin will treat both in a child. For mycoplasma you need azithromycin.
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amother




Natural
 

Post  Fri, Jul 31 2020, 1:56 pm
amother [ Black ] wrote:
Positive IGG with negative IGM indicates past infection, not current for Lyme. That will not be helped with abx as there is no current infection.

If you still want to cover for Lyme and pandas, augmentin will treat both in a child. For mycoplasma you need azithromycin.
positive igg can also indicate chronic subclinical infection. Lyme is tricky like that. And even if it is indeed a past infection, it may have set off a cytokine cascade that is still causing brain inflammation even if the infection is theoretically gone. Also, aside from antimicrobial activity, antibiotics play a role in immunomodulation in chronic Lyme infections.
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amother




Coffee
 

Post  Yesterday at 3:33 pm
My son had Pandas. His strep titers were very high.

He was on antibiotics for a year and a half and that managed his symptoms. Then it stopped working
all of a sudden.

Someone suggested I take him to Ezra Arlin in Monsey. He's a holistic practioner.

Ezra gave him folate drops.

After 6 months of the drops his anxiety was gone, and blood work came back normal.
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amother




Natural
 

Post  Yesterday at 3:35 pm
amother [ Coffee ] wrote:
My son had Pandas. His strep titers were very high.

He was on antibiotics for a year and a half and that managed his symptoms. Then it stopped working
all of a sudden.

Someone suggested I take him to Ezra Arlin in Monsey. He's a holistic practioner.

Ezra gave him folate drops.

After 6 months of the drops his anxiety was gone, and blood work came back normal.
just folate? That’s it? Im thrilled for you but also floored. No symptoms whatsoever?
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amother




Coffee
 

Post  Yesterday at 4:09 pm
It was a special type of folate...I think it was folate in it's natural state. Also, my son was already gluten free, but Ezra said not to eat wheat or anything with synthetic folic acid in it (multi-vitamins, orange juice, breakfast cereals, etc..

Ezra said that the reason why some people get PANDAS is because they have the MTHFR mutation. (I did a lot of research on this and it's still a pretty controversial issue, not an exact science. Most doctors don't recognize it.)
Basically, people with this mutation cant digest the folic acid that's added to flour in the US, or folic acid in most multi vitamins. So when they eat food with folic acid, they are building up this toxicity, and they are not getting the needed nutrient folate. Folate helps get rid of strep, but they are deficient of this nutrient so they can't detox the body from the strep.

His main symptom was anxiety. It completely went away.
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amother




Indigo
 

Post  Yesterday at 7:41 pm
amother [ Coffee ] wrote:
My son had Pandas. His strep titers were very high.

He was on antibiotics for a year and a half and that managed his symptoms. Then it stopped working
all of a sudden.

Someone suggested I take him to Ezra Arlin in Monsey. He's a holistic practioner.

Ezra gave him folate drops.

After 6 months of the drops his anxiety was gone, and blood work came back normal.

Can you post the brand and dosage of the folate drops?
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amother




Natural
 

Post  Yesterday at 7:55 pm
amother [ Coffee ] wrote:
It was a special type of folate...I think it was folate in it's natural state. Also, my son was already gluten free, but Ezra said not to eat wheat or anything with synthetic folic acid in it (multi-vitamins, orange juice, breakfast cereals, etc..

Ezra said that the reason why some people get PANDAS is because they have the MTHFR mutation. (I did a lot of research on this and it's still a pretty controversial issue, not an exact science. Most doctors don't recognize it.)
Basically, people with this mutation cant digest the folic acid that's added to flour in the US, or folic acid in most multi vitamins. So when they eat food with folic acid, they are building up this toxicity, and they are not getting the needed nutrient folate. Folate helps get rid of strep, but they are deficient of this nutrient so they can't detox the body from the strep.

His main symptom was anxiety. It completely went away.
im very familiar with mthfr but there’s a lot more to pandas than just mthfr. So glad it worked for you though. That’s incredible!
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amother




Aquamarine
 

Post  Yesterday at 10:38 pm
Would also love to get brand/ dose of folate drops.
Thanks!
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amother




Royalblue
 

Post  Yesterday at 10:55 pm
I didn’t want to derail OP’s thread, so I opened a new one. Please be so kind to read it and assist me
If you’re knowledgeable in this area. I’m completely lost and overwhelmed.
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