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PANDAS?

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amother

OP ↓

Thu, Nov 28 2024, 10:20 am

My child's pediatrician suspects she has PANDAS. I don't love the idea of putting my child on antibiotics long-term for something we can't know she definitely has (meaning that there's no clear test to diagnose it). Does anyone have experience with this?

amother

Gray

Thu, Nov 28 2024, 10:26 am

Why does the ped think it’s pandas ? Did you do blood work?

amother

↑ OP ↓

Thu, Nov 28 2024, 10:32 am

She ticks off all the behavioral symptoms boxes. We brought her in for an apt and she tested positive for strep, without any illness symptoms.

What blood test indicates PANDAS?

amother

Coral

Thu, Nov 28 2024, 10:34 am

Sometimes a kid has behavior issues while having strep. So could be they just need the regular dose and will be fine after. How long are the behaviors an issue for?

amother

↑ OP ↓

Thu, Nov 28 2024, 10:40 am

Very long! She's 4. About a year and a half ago something shifted in her personality and she became very angry, explosive, anxious. (I thought it was just terrible 2's).

It's been getting progressively worse.

amother

↑ OP

Thu, Nov 28 2024, 11:01 am

Also want to add that I live OOT so don't have access to all the PANDAS experts on the east coast

amother

Candycane

Thu, Nov 28 2024, 11:08 am

The blood test checks the strep titers. Normal is in the 100 range. Pandas starts at about 600
My son had 1200 at the height of his pandas
Pans is similar but comes from the infection of mycoplasma pneumonia.
Antibiotics is the least invasive regimen, and if that works for you then it’s the best way to go. It doesn’t go away if left untreated and can become much much worse
Don’t forget probiotics though!

amother

Skyblue

Thu, Nov 28 2024, 11:14 am

Check for lyme disease.
I was sure it was pandas .. became aggressive overnight and couldn't sit and play or listen to a story being read. Was ready to get him a diagnosis. (even posted a thread here to help me start that process) was so scary.
bh bh a million times over. went to his dr (he's also 4) and she ran tests. and told me positive for lyme..HE is different kid now. Still has 2 more weeks of antibiotics. it's worth to rule that out.

amother

Coffee

Thu, Nov 28 2024, 11:52 am

amother Candycane wrote:

This is false information.
There is no blood test to test for pans/pandas.
(Just like there is no blood test to test for adhd, schizophrenia etc).
It's based on a collected set of clinical symptoms.
A blood test just determines WHAT is the triggering cause of these behaviours. If you have sudden onset of massive behaviours with a current strep infection...you have pandas. Whether or not your strep titers go up in your bloodwork depends on ur immune system functioning well. (Some of the pandas kids already have a malfunctioning immune system...or else they would have normal response to strep infection like sore throat, fever, leg pain etc...)
If strep titers are negative and there has been a sudden onset of symptoms, there are many other triggers that can cause these behaviours, including but BM or limited to, lyme and co., mycoplasma, allergies or allergy meds, black mold exposure etc...

amother

Melon

Thu, Nov 28 2024, 1:02 pm

OP you can do an ibuprophen trial. Or Cunningham panel.

There are natural alternatives to antibiotics but honestly I regret the time I wasted because I didn't want long term antibiotics for my kid.

amother

Pistachio ↓

Thu, Nov 28 2024, 1:30 pm

My 4yr old (then 2) has pandas too. It took forever to diagnose because his strep test was always positive. We had to wait for him to be completely strep free before we took the blood test and that showed that his levels were elevated. Bh after 3 months on antibiotics he has been free of symptoms for a year already. The only downside was that I guess you can say he became immune to the azithromycin and any time he gets an infection now (not often bh) he needs a stronger medication.

amother

Pear

Thu, Nov 28 2024, 1:35 pm

Isaac from Refuah pharmacy has a vitamin regimen that he uses to treat pandas. I know someone who tried it and it was successful bH. I believe you can speak to him over the phone.

rose613

Thu, Nov 28 2024, 3:47 pm

You need to treat the active strep with antibiotics , people / drs differ if should then go on to 30 days or an extended (6 month course). Some people wean to natural abx

There’s other things you can do to help with underlying inflammation /autoimmune dysfunction.

No food coloring
Limit dairy and gluten
Low auger
Vitamin d
Probiotics
Magnesium
Consider turmeric
Essential oils
Homeopathy

The dr O’Hara book and a light in the dark for pandas are very helpful.

Wishing you hatzlacha

amother

Canary

Thu, Nov 28 2024, 3:48 pm

amother Pear wrote:

Isaac from Refuah pharmacy has a vitamin regimen that he uses to treat pandas. I know someone who tried it and it was successful bH. I believe you can speak to him over the phone.

How do you contact? I’m OOT and not sure what you are referring to.

amother

Clear

Thu, Nov 28 2024, 4:09 pm

amother Candycane wrote:

DC results were in the 200/300 (2 diff labs)
Which probiotics do you give?

Also do you eventually retest to see if they go down?

amother

↑ Pistachio ↓

Thu, Nov 28 2024, 4:23 pm

amother Clear wrote:

DC results were in the 200/300 (2 diff labs)
Which probiotics do you give?

Also do you eventually retest to see if they go down?

I did and bh they came back normal.

amother

Kiwi ↓

Thu, Nov 28 2024, 7:45 pm

I've been doing homeopathy for almost 3 years now. It's the only intervention I did and it clearly helped my kid. He was 4 at the time. I used resilience naturopath in CA. I'm very vocal about it in the pandas group but not under my name here. For the record I don't believe in homeopathy lol

amother

↑ Pistachio ↓

Thu, Nov 28 2024, 7:46 pm

amother Kiwi wrote:

What is it exactly?

amother

↑ Kiwi

Thu, Nov 28 2024, 8:00 pm

amother Pistachio wrote:

What is it exactly?

You have a monthly call with them (I joke that it's my therapy)
They prescribe a remedy which they ship
You give it to kid
That's it. Its all I was capable of at the time. I've done the functional and diet route and theres no way I could do that with a 4 year old. And I wasn't going to give him long term antibiotics either

amother

Impatiens

Fri, Nov 29 2024, 12:04 am

my son‘s numbers were off the charts. The doctor said he never saw such high numbers. his Denise b antibodies were 2480! His Aso was 477. I put him onto antibiotics for around 8 months. Thank gd this year he’s doing pretty well. I use the bliss k 12 vitamin and I did some cranial.

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