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Forum -> Parenting our children -> Our Challenging Children (gifted, ADHD, sensitive, defiant)
The Official Neuroinflammation Thread
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amother
OP


 

Post Mon, Jul 12 2021, 4:36 pm
Lately, many of the threads in the Challenging Children forum have garnished advice to deal with the neuroinflammation, and many of us amothers are grabbing onto that advice but are clueless as to how to actually go about that.

We keep hearing about pans/pandas, lyme, brain inflammation, functional route, etc, but have no idea where to start.

This will be the thread for all that information. For moms to ask questions, for other btdt moms to share resources, etc.

I will start by asking: Has anyone found a good dr in the ny/nj area that treats this?
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FranticFrummie




 
 
    
 

Post Mon, Jul 12 2021, 4:39 pm
Following.

I try to eat an anti-inflammatory diet, and I pop NSAIDs like candy. Inflammation is my middle name. Sick
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amother
Mintcream


 

Post Mon, Jul 12 2021, 4:41 pm
Dr elana frid in NY for serious chronic Lyme and pandas
In many cases you can start with a pediatrician who understands pandas.
You can also do a lot of natural things on your own.
If your home has mold (not always visible) get rid of it.
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amother
Mintcream


 

Post Mon, Jul 12 2021, 4:42 pm
FranticFrummie wrote:
Following.

I try to eat an anti-inflammatory diet, and I pop NSAIDs like candy. Inflammation is my middle name. Sick


Do you eat a lot of fermented foods as well? Leaky gut is cause for a lot of issues
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amother
OP


 

Post Mon, Jul 12 2021, 4:52 pm
amother [ Mintcream ] wrote:
Dr elana frid in NY for serious chronic Lyme and pandas
In many cases you can start with a pediatrician who understands pandas.
You can also do a lot of natural things on your own.
If your home has mold (not always visible) get rid of it.


Has anyone found a pediatrician who understands it and treats it?
What natural things can you do on your own?
How to know if there is mold? Does that really affect kids? Can you tell me more? Bathroom ceiling has some black dots, I assume that's mold. How to get rid of it?

Thank you
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amother
Peach


 

Post Mon, Jul 12 2021, 5:03 pm
amother [ OP ] wrote:
Lately, many of the threads in the Challenging Children forum have garnished advice to deal with the neuroinflammation, and many of us amothers are grabbing onto that advice but are clueless as to how to actually go about that.


I assume it’s the same one or maybe two posters always posting responses that everything is neuroinflammation and leaky gut. It’s always written in the same style (“We have found…”). It would be nice if this poster could set up an AMA thread
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lk1234




 
 
    
 

Post Mon, Jul 12 2021, 5:18 pm
amother [ Peach ] wrote:
I assume it’s the same one or maybe two posters always posting responses that everything is neuroinflammation and leaky gut. It’s always written in the same style (“We have found…”). It would be nice if this poster could set up an AMA thread


Haha I just wrote the exact same thing on the ama thread just started☺☺
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amother
Papayawhip


 

Post Mon, Jul 12 2021, 5:27 pm
amother [ Peach ] wrote:
I assume it’s the same one or maybe two posters always posting responses that everything is neuroinflammation and leaky gut. It’s always written in the same style (“We have found…”). It would be nice if this poster could set up an AMA thread
That would be me. AMA.
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amother
Rainbow


 

Post Mon, Jul 12 2021, 5:31 pm
lk1234 wrote:
Haha I just wrote the exact same thing on the ama thread just started☺☺

Im the one who started the ama thread but it's not me who posts the long replies with tons of info. I may chime in from time to time but as I wrote in the ama thread, I see there are others who have way more knowledge than me.
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lk1234




 
 
    
 

Post Mon, Jul 12 2021, 5:32 pm
amother [ Papayawhip ] wrote:
That would be me. AMA.


So pray tell who are you??? Every time I see that post I chuckle, and I wait for you to post on every thread of this type
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amother
Papayawhip


 

Post Mon, Jul 12 2021, 5:33 pm
lk1234 wrote:
So pray tell who are you??? Every time I see that post I chuckle, and I wait for you to post on every thread of this type
Im a mom of kids with neuroinflammation on a mission to heal them. I try to be helpful by giving other moms dealing with similar issues a perspective they likely won’t get from their drs, therapists, psychiatrist. Because it’s been enormously helpful to us. It gave us hope, it gave us far more insight than the psychology/psychiatry field ever could, it gave us tools, and it has the potential to give us our kids back. And if not for me having stumbled across this information, I would still be in those same trenches, fumbling in the dark. Treating neuroinflammation is faaaar from simple, and sometimes I wish I didn’t know everything I did because the knowledge is painful without all the resources to implement it, and because with all the knowledge we have it’s sometimes not enough, this disease is a beast, but I still think knowing is better than not knowing, and that this kind of knowledge is at the frontier and cutting edge of behavioral health, fully and robustly supported by the literature, with more evidence coming out every day. There’s a lot more to the story but I’ll leave it at this for now. Does this answer your question?
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amother
OP


 

Post Mon, Jul 12 2021, 5:48 pm
amother [ Papayawhip ] wrote:
Im a mom of kids with neuroinflammation on a mission to heal them. I try to be helpful by giving other moms dealing with similar issues a perspective they likely won’t get from their drs, therapists, psychiatrist. Because it’s been enormously helpful to us. It gave us hope, it gave us far more insight than the psychology/psychiatry field ever could, it gave us tools, and it has the potential to give us our kids back. And if not for me having stumbled across this information, I would still be in those same trenches, fumbling in the dark. Treating neuroinflammation is faaaar from simple, and sometimes I wish I didn’t know everything I did because the knowledge is painful without all the resources to implement it, and because with all the knowledge we have it’s sometimes not enough, this disease is a beast, but I still think knowing is better than not knowing, and that this kind of knowledge is at the frontier and cutting edge of behavioral health, fully and robustly supported by the literature, with more evidence coming out every day.


So do you believe that adhd exists? Or you believe it's always just from these underlying things?
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amother
Papayawhip


 

Post Mon, Jul 12 2021, 5:51 pm
amother [ OP ] wrote:
So do you believe that adhd exists? Or you believe it's always just from these underlying things?
I believe it exists as a group of symptoms, but that there are always underlying biological, epigenetic causes. Many of which can be addressed at a root cause level. FWIW, it’s not always pans, or pandas, or even inflammation technically, but it runs deeper than, dopamine deficiency, here’s some Ritalin. You have to keep asking why, and keep peeling back the layers. Yes, the most direct cause may have to do with the dopaminergic system, but why is dopamine out of balance?
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amother
OP


 

Post Mon, Jul 12 2021, 5:53 pm
amother [ Papayawhip ] wrote:
I believe it exists as a group of symptoms, but that there are always underlying biological, epigenetic causes. Many of which can be addressed at a root cause level.


Do you have a good practitioner that use for all this functional stuff?
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amother
Papayawhip


 

Post Mon, Jul 12 2021, 5:55 pm
amother [ OP ] wrote:
Do you have a good practitioner that use for all this functional stuff?
I know it sounds weird, but we’ve never actually seriously worked with a functional md, though we’ve seen various practitioners at different points, mostly for financial reasons, but I can recommend 3 amazing integrative functional mds in the tri state area that specialize in neuro inflammatory disorders. For adhd, if you want a very basic introductory primer, I always recommend Finally Focused my Dr. James Greenblatt. The only drawback of his book is that he doesn’t address pathogens at all. It’s very, very basic like that. For a little more in depth, I like Dr. Kenneth Bock’s Healing the 4a Disorders.
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amother
Ivory


 

Post Mon, Jul 12 2021, 5:57 pm
I’m very excited about this thread. I’m a mom who has a bunch of kids with all different inflammatory stuff (autoimmune hypothyroid, anxiety, adhd etc)
And I’ve spent thousands and read tons of books. Honestly without much success. I would love to hear what worked what didn’t work etc etc
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amother
Papayawhip


 

Post Mon, Jul 12 2021, 6:03 pm
amother [ Ivory ] wrote:
I’m very excited about this thread. I’m a mom who has a bunch of kids with all different inflammatory stuff (autoimmune hypothyroid, anxiety, adhd etc)
And I’ve spent thousands and read tons of books. Honestly without much success. I would love to hear what worked what didn’t work etc etc
What works and doesn’t work really depends on the individual and what they have going on in terms of root causes. Have you ever done any kind of functional testing? That will help you pinpoint causes and precision treat. It’s also good to keep in mind the multiple hits idea, meaning that most of us having more than 1 thing going on, and when we try to address things and don’t see changes, it could be you’re really on the right track you just can’t see it because there are too many other things going on. You need to keep peeling back the layers.
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amother
Crimson


 

Post Mon, Jul 12 2021, 6:05 pm
So where is the lost of names of doctors who can actually help??
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amother
Papayawhip


 

Post Mon, Jul 12 2021, 6:07 pm
amother [ Crimson ] wrote:
So where is the lost of names of doctors who can actually help??
Dr. Nancy Ohara, Dr. Kenneth Bock, Dr. Michael Elice.
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amother
Papayawhip


 

Post Mon, Jul 12 2021, 6:14 pm
amother [ OP ] wrote:
Has anyone found a pediatrician who understands it and treats it?
What natural things can you do on your own?
How to know if there is mold? Does that really affect kids? Can you tell me more? Bathroom ceiling has some black dots, I assume that's mold. How to get rid of it?

Thank you
Weve seen pediatricians who were moderately helpful, but most didn’t really get it on a deeper level. We did see one pediatrician who worked privately at an integrative practice once a week who specialized in this, who was more helpful.
There are many natural things to do on your own, the ones we found most helpful were
High dose magnesium
Methylated b vitamins
Magnesium and epsom salt footsoaks
Stephen Buhners herbal pandas protocol
Other Buhner protocols for other chronic infections like lyme and co, viruses
A special form of vit b1 called ttfd
Neurotransmitter support like Gaba, l theanine, 5htp
Check out the bioray kids line, it’s excellent
Read everything you can get your hands in on this topic
Diet!! At minimum gluten and dairy free
Not technically natural but still better than psych meds, Motrin, naproxen, anti histamines
You can order your own functional tests like stool, OAT, neurotransmitter testing, thyroid testing
Craniosacral doesn’t have to break the bank
Get on Facebook groups, more info there than any single dr on the planet

Mold is a huge topic in this area, but I happen to know very little about it. Maybe others can fill me in.
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