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PANDAS HELP!!
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amother




OP
 

Post  Wed, Aug 05 2020, 10:28 pm
I’ve been struggling with my child with severe behavioral, emotional & social issues for the past 3 years:( She also has chronic strep, which was treated but somehow overlooked as the root of any problem. This past year she had Mycoplasma, which I thought we finally got rid of. Something is always cropping up which I noticed,
worsens her behaviors & she regresses terribly, becomes a nervous wreck, defiant, has massive meltdowns, cannot fall asleep at night, bedwets occasionally, and is physically aggressive with her siblings and peers. All rationality flies out the window. Her school is up In arms & frankly speaking so am I Crying I always attributed her behaviors to sensory issues, social issues, my parenting, ETC.. Took her for evaluations, therapists. She learned some skills but then there are these flare ups and She’s back to square one. Last week I once again went to my pediatrician and he casually mentioned to me: “ You know your daughters has PANDAS.” I nearly fell off my chair!! This is a very popular pediatric practice in Boro Park that strongly disagree with the whole concept (myth, in their opinion) of PANS/PANDAS. My question to you ladies is. WHERE DO I GO FROM HERE??? (Pediatrician gave me the diagnoses but is recommending I seek a qualified doctor who specializes in this.)

PLEASE HELP!
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amother




Cerise
 

Post  Wed, Aug 05 2020, 10:55 pm
OP we have been on this journey for a while. I am happy to answer your questions. There are many different routes you can take here. Personally, we mostly self treated, with some help from our pediatrician and some other doctors. But as the parent I made it my business to become an expert on my child and their disorder, and be at the forefront of their treatment. There really wasn’t another choice.

If you want to go down the long term antibiotic road, see if your pedi is willing to help you. Dr. Shul man would’ve been a good place to start, but I think I heard she’s not practicing anymore.

I can recommend 2 integrative care drs, but they don’t take insurance and cost a lot of money.

Are you willing to go down the alternative route? Diet changes, supplements, that kind of stuff?
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amother




OP
 

Post  Wed, Aug 05 2020, 11:34 pm
amother [ Cerise ] wrote:
OP we have been on this journey for a while. I am happy to answer your questions. There are many different routes you can take here. Personally, we mostly self treated, with some help from our pediatrician and some other doctors. But as the parent I made it my business to become an expert on my child and their disorder, and be at the forefront of their treatment. There really wasn’t another choice.

If you want to go down the long term antibiotic road, see if your pedi is willing to help you. Dr. Shul man would’ve been a good place to start, but I think I heard she’s not practicing anymore.

I can recommend 2 integrative care drs, but they don’t take insurance and cost a lot of money.

Are you willing to go down the alternative route? Diet changes, supplements, that kind of stuff?

My pediatrician recommends I see a specialist. I honestly don’t know where to start. Definitely willing to go down the alternative route if I have a practitioner that comes highly recommended, who can guide me every step of the way.
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amother




Cerise
 

Post  Wed, Aug 05 2020, 11:41 pm
amother [ OP ] wrote:
My pediatrician recommends I see a specialist. I honestly don’t know where to start. Definitely willing to go down the alternative route if I have a practitioner that comes highly recommended, who can guide me every step of the way.
did the pediatrician give you a name of a specialist?
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amother




Seashell
 

Post  Thu, Aug 06 2020, 12:02 am
A few years ago someone reccomended dr Glenn hirsch at nyu to me. For various reasons including being out of state it didn't work out for me but it may be somewhere to start. Hatzlocha! You should find the right shaliach and see a quick complete refuah!!
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amother




Jetblack
 

Post  Thu, Aug 06 2020, 12:50 am
Someone on this site recently mentioned working with Mrs. Green from supreme health food store in Monsey. I'm so grateful I did- I'm seeing huge improvement in my son BH- his behavior was very similar to what you described. It is expensive though- costs over $400 each month. But it's worth it! BH and thank you anonymous poster... she will want to see the bloodwork your pediatrician can fax it to her. She is very knowledgeable.
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amother




Linen
 

Post  Thu, Aug 06 2020, 9:35 am
I've posted this before and will do so again.
Pandas involves 3 pronged approach (you can do either regular or holistic but should have all 3.)
1. Finding and getting rid of underlying/chronic infections/mold/allergies that are triggering her immune system to attack the brain again and again. (Antibiotics or natural antibiotics/homeopathy etc.)
2. Reducing the brain inflammation by being vigilant about giving an anti inflammatory (Motrin or natural curcumin etc.)
3. Autoimmune treatment, trying to stop the body from attacking the brain again at every trigger. (Steroids, IVIG, or going natural with supplements to modulate (NOT boost!) The immune system)
Dr. Itchie Statfeld in Williamsburg can treat the first, but doesn't usually do 2 or 3. For that, you need neurologist like Dr. Younger, Dr. Frid etc. Or a holistic practitioner. Dr. Shulman is retiring but she has a NP taking over her pandas patients (they will do 1, 2 and 3).
Personally, I would start with number one and see how far that takes you. Keep in mind that it takes time to see improvement.
Good luck from another pandas parent.
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amother




Cerise
 

Post  Thu, Aug 06 2020, 9:49 am
amother [ Linen ] wrote:
I've posted this before and will do so again.
Pandas involves 3 pronged approach (you can do either regular or holistic but should have all 3.)
1. Finding and getting rid of underlying/chronic infections/mold/allergies that are triggering her immune system to attack the brain again and again. (Antibiotics or natural antibiotics/homeopathy etc.)
2. Reducing the brain inflammation by being vigilant about giving an anti inflammatory (Motrin or natural curcumin etc.)
3. Autoimmune treatment, trying to stop the body from attacking the brain again at every trigger. (Steroids, IVIG, or going natural with supplements to modulate (NOT boost!) The immune system)
Dr. Itchie Statfeld in Williamsburg can treat the first, but doesn't usually do 2 or 3. For that, you need neurologist like Dr. Younger, Dr. Frid etc. Or a holistic practitioner. Dr. Shulman is retiring but she has a NP taking over her pandas patients (they will do 1, 2 and 3).
Personally, I would start with number one and see how far that takes you. Keep in mind that it takes time to see improvement.
Good luck from another pandas parent.
gut health is also a huge piece. That almost none of these drs will talk to you about
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amother




OP
 

Post  Thu, Aug 06 2020, 9:55 am
amother [ Linen ] wrote:
I've posted this before and will do so again.
Pandas involves 3 pronged approach (you can do either regular or holistic but should have all 3.)
1. Finding and getting rid of underlying/chronic infections/mold/allergies that are triggering her immune system to attack the brain again and again. (Antibiotics or natural antibiotics/homeopathy etc.)
2. Reducing the brain inflammation by being vigilant about giving an anti inflammatory (Motrin or natural curcumin etc.)
3. Autoimmune treatment, trying to stop the body from attacking the brain again at every trigger. (Steroids, IVIG, or going natural with supplements to modulate (NOT boost!) The immune system)
Dr. Itchie Statfeld in Williamsburg can treat the first, but doesn't usually do 2 or 3. For that, you need neurologist like Dr. Younger, Dr. Frid etc. Or a holistic practitioner. Dr. Shulman is retiring but she has a NP taking over her pandas patients (they will do 1, 2 and 3).
Personally, I would start with number one and see how far that takes you. Keep in mind that it takes time to see improvement.
Good luck from another pandas parent.

Omg I’m so overwhelmed Crying
How do I find out what is causing the underlying infection?
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amother




OP
 

Post  Thu, Aug 06 2020, 9:56 am
[quote="amother [ OP ]"]Omg I’m so overwhelmed Crying
Do you have any contact info for the NP under Dr. Shulman? My Dr. actually recommended her in passing. He really does not want to get involved in a complicated pandas case..
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amother




Pink
 

Post  Thu, Aug 06 2020, 10:00 am
[quote="amother [ OP ]"]
amother [ OP ] wrote:
Omg I’m so overwhelmed Crying
Do you have any contact info for the NP under Dr. Shulman? My Dr. actually recommended her in passing. He really does not want to get involved in a complicated pandas case..


Which doctor told you that your child has PANDAS?
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amother




Cerise
 

Post  Thu, Aug 06 2020, 10:11 am
amother [ OP ] wrote:
Omg I’m so overwhelmed Crying
How do I find out what is causing the underlying infection?
you run titer testing for the most common culprits. Strep, mycoplasma (which you already know are issues for you), hhv6, h1n1, ebv, cmv, coxsackie a and b. Food and environmental allergies. Lyme and coinfections, but you’ll need specialized testing for this, the regular ones are not reliable. Candida is a little trickier to test for but often a culprit. You want igg and igm for each of these. And get a copy of all the results.
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amother




OP
 

Post  Thu, Aug 06 2020, 3:16 pm
amother [ Cerise ] wrote:
you run titer testing for the most common culprits. Strep, mycoplasma (which you already know are issues for you), hhv6, h1n1, ebv, cmv, coxsackie a and b. Food and environmental allergies. Lyme and coinfections, but you’ll need specialized testing for this, the regular ones are not reliable. Candida is a little trickier to test for but often a culprit. You want igg and igm for each of these. And get a copy of all the results.

Who does this testing?
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amother




Cerise
 

Post  Thu, Aug 06 2020, 5:08 pm
amother [ OP ] wrote:
Who does this testing?
any dr who is willing to help

If you want good Lyme and co testing, dr Visconti in Staten Island is amazing and takes insurance. Tell him your kid has recurrent strep and persistent mycoplasma and you want to look for underlying infections that may be contributing.
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amother




OP
 

Post  Thu, Aug 06 2020, 5:20 pm
amother [ Cerise ] wrote:
any dr who is willing to help

If you want good Lyme and co testing, dr Visconti in Staten Island is amazing and takes insurance. Tell him your kid has recurrent strep and persistent mycoplasma and you want to look for underlying infections that may be contributing.

Thank you. Bh my kids do not have Lyme disease. I did extensive testing through stony brook lab last year.
Also, I don’t understand what you mean when you say underlying infection. Isn’t the strep/Mycoplasma the infection??
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amother




Cerise
 

Post  Thu, Aug 06 2020, 5:28 pm
amother [ OP ] wrote:
Thank you. Bh my kids do not have Lyme disease. I did extensive testing through stony brook lab last year.
Also, I don’t understand what you mean when you say underlying infection. Isn’t the strep/Mycoplasma the infection??
yes but sometimes there are other infections that cause immune suppression of sorts that will allow infections like strep and mycoplasma to take hold and stick around. A lot of pandas kids find Lyme and coinfections under their other infections, and claim that when they treat those the strep, myco etc can finally resolve.

There is a reason the strep and myco keep coming back. Lyme and co could be a reason. There could be other reason too. Layers of the onion...

Who did the stony brook testing for you? Why did you test? Did you see the results yourself? Who interpreted them? Was it just Lyme or also coinfections?
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amother




OP
 

Post  Thu, Aug 06 2020, 6:13 pm
amother [ Cerise ] wrote:
yes but sometimes there are other infections that cause immune suppression of sorts that will allow infections like strep and mycoplasma to take hold and stick around. A lot of pandas kids find Lyme and coinfections under their other infections, and claim that when they treat those the strep, myco etc can finally resolve.

There is a reason the strep and myco keep coming back. Lyme and co could be a reason. There could be other reason too. Layers of the onion...

Who did the stony brook testing for you? Why did you test? Did you see the results yourself? Who interpreted them? Was it just Lyme or also coinfections?

A close family member was extremely ill with Lyme so we all tested just to be on the safe side. Asisa assisted us with the testing, which was ordered directly from the Lab.
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amother




OP
 

Post  Thu, Aug 06 2020, 6:14 pm
Does PANDAS cause sensory issues as well?
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amother




Cerise
 

Post  Thu, Aug 06 2020, 6:21 pm
amother [ OP ] wrote:
A close family member was extremely ill with Lyme so we all tested just to be on the safe side. Asisa assisted us with the testing, which was ordered directly from the Lab.
I would ask for a copy of all testing they did.

I can’t tell you how many times we ran bloodwork and were told everything came back normal when lots of things didn’t.

You also want to know if they tested for coinfections.
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amother




Cerise
 

Post  Thu, Aug 06 2020, 6:22 pm
amother [ OP ] wrote:
Does PANDAS cause sensory issues as well?
yes absolutely. Removing gluten, dairy, corn and soy from the kids diet very often has a remarkable effect on their sensory system. As does improving gut health.
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