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I'm a PANS/Neuroinflammation mom of 2. AMA!
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amother




OP
 

Post Mon, Jul 12 2021, 8:10 pm
I have 2 kids who have between the 2- pans, pandas, asd, adhd, ocd. Hope I can answer some of your questions. Other moms with experience, please chime in as I see some super-knowledgeable moms here on imamother.
AMA
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lk1234




 
 
 
 

Post Mon, Jul 12 2021, 8:15 pm
This is a super mean question, I'll post under my screen name so you know I'm legit but I've been dying to ask. Are you the poster that posts on every thread regarding autism, add, behavior issues something about gut health or, pandas. I am active in this forum and noticed there is always one poster who says something like you should check for pandas, gut leak, neuroinflammation. I'm wondering if it is multiple Imas or just one☺☺
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amother




Red
 

Post Mon, Jul 12 2021, 8:16 pm
following.
I just did a tonsillectomy for my son with PANDAS. too early to tell if it's a success.... davening that it is the answer!
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amother




OP
 

Post Mon, Jul 12 2021, 8:34 pm
lk1234 wrote:
This is a super mean question, I'll post under my screen name so you know I'm legit but I've been dying to ask. Are you the poster that posts on every thread regarding autism, add, behavior issues something about gut health or, pandas. I am active in this forum and noticed there is always one poster who says something like you should check for pandas, gut leak, neuroinflammation. I'm wondering if it is multiple Imas or just one☺☺

It's not me. I'll add my 2 cents every now and then but the long replies are not usually me.
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amother




DarkKhaki
 

Post Mon, Jul 12 2021, 8:36 pm
OP, what have you found to help the most? Do you treat with medication or also use alternative means?
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amother




Hyssop
 

Post Mon, Jul 12 2021, 8:38 pm
lk1234 wrote:
This is a super mean question, I'll post under my screen name so you know I'm legit but I've been dying to ask. Are you the poster that posts on every thread regarding autism, add, behavior issues something about gut health or, pandas. I am active in this forum and noticed there is always one poster who says something like you should check for pandas, gut leak, neuroinflammation. I'm wondering if it is multiple Imas or just one☺☺
That would probably be me. You can ask me stuff here or on the other thread. Though I don’t want to hijack.
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banana split




 
 
 
 

Post Mon, Jul 12 2021, 8:40 pm
What did you find helps the most to decrease neuroinflammation?
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amother




Hyssop
 

Post Mon, Jul 12 2021, 8:59 pm
banana split wrote:
What did you find helps the most to decrease neuroinflammation?
I’m not OP but for us long term antibiotics gave us the most obvious, significant gains. But they only lasted as long as we were on them.
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amother




DarkKhaki
 

Post Mon, Jul 12 2021, 9:06 pm
amother [ Hyssop ] wrote:
I’m not OP but for us long term antibiotics gave us the most obvious, significant gains. But they only lasted as long as we were on them.

Did you see any side effects of being on the antibiotics long term?
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amother




Hyssop
 

Post Mon, Jul 12 2021, 9:08 pm
amother [ DarkKhaki ] wrote:
Did you see any side effects of being on the antibiotics long term?
No.
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amother




Powderblue
 

Post Mon, Jul 12 2021, 9:21 pm
How are you treating the pans and neuroinflammation
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amother




OP
 

Post Mon, Jul 12 2021, 10:04 pm
Antiobiotics was great so long as child was taking them. Once they started to wean, symptoms began to return. We've done many different holistic type of treatments. They all contributed to recovery but I can't say one thing was the magic. If anyone knows any magic, please let me know.
We've found healing and improvement in many different modalities of treatment but nothing was permanent. When dc gets strep, we do see a return of symptoms, though never as bad as it's been at it's peak. Our go-to treatments for acute infections right now is homeopathy and body/energy work (craniosacral therapy with kinesiology).
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amother




Cornsilk
 

Post Mon, Jul 12 2021, 10:09 pm
amother [ DarkKhaki ] wrote:
Did you see any side effects of being on the antibiotics long term?


If you’re concerned about gut health long term antibiotics is not a good idea.
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amother




DarkKhaki
 

Post Mon, Jul 12 2021, 10:14 pm
What made you choose homeopathy and body/energy work over what a doctor would give? Why did you leave the medical route if you saw it helped also?
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amother




Hyssop
 

Post Mon, Jul 12 2021, 10:16 pm
amother [ Cornsilk ] wrote:
If you’re concerned about gut health long term antibiotics is not a good idea.
In an ideal, simple world, this would be true. I held off treating with antibiotics for this reason for a long time, and deeply regret it. For starters most of us start off life with already compromised guts. Chronic strep isn’t great for the gut either, infections and inflammation weaken the intestinal barrier, infections trigger the vagus nerve into overdrive which can direct inflammation right back into the gut. Sometimes there gut bugs directly causing issues in the gut that need to be wiped out for healing to happen. Also on a practical level when my kids brains are inflamed, it’s impossible to do anything to help their guts, their just not cooperative enough. Its tricky, and I don’t have the answer for this. I am a big believer in gut health, and at the same time antibiotics were a lifesaver over here, I regret not giving them sooner and for longer. Depends which antibiotics also. Another point, if someone has the resources from the get go to treat aggressively without antibiotics I would fully support it. But antibiotics is superior to no treatment, or delaying treatment.
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amother




OP
 

Post Mon, Jul 12 2021, 10:20 pm
amother [ DarkKhaki ] wrote:
What made you choose homeopathy and body/energy work over what a doctor would give? Why did you leave the medical route if you saw it helped also?


We did go to doctors first and followed everything they told us to do. But they were never able to put my child into remission without being heavily medicated. So we started to look around. We tried quite a few things and found this to be a good combination for us, both in terms of effectiveness and in terms of compliance.
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amother




DarkKhaki
 

Post Mon, Jul 12 2021, 10:22 pm
amother [ OP ] wrote:
We did go to doctors first and followed everything they told us to do. But they were never able to put my child into remission without being heavily medicated. So we started to look around. We tried quite a few things and found this to be a good combination for us, both in terms of effectiveness and in terms of compliance.

Who do you use to treat your child with these alternative therapies? Is it all out of pocket?
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amother




Chocolate
 

Post Mon, Jul 12 2021, 11:09 pm
Hi, me too! Mom of two pans kids. Hell of a ride.
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amother




Floralwhite
 

Post Mon, Jul 12 2021, 11:18 pm
amother [ OP ] wrote:
Antiobiotics was great so long as child was taking them. Once they started to wean, symptoms began to return. We've done many different holistic type of treatments. They all contributed to recovery but I can't say one thing was the magic. If anyone knows any magic, please let me know.
We've found healing and improvement in many different modalities of treatment but nothing was permanent. When dc gets strep, we do see a return of symptoms, though never as bad as it's been at it's peak. Our go-to treatments for acute infections right now is homeopathy and body/energy work (craniosacral therapy with kinesiology).


Who did you use for cranio & kinesiology? Were you happy? How many sessions were needed? Thank you for offering to share your experiences.
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Zehava




 
 
 
 

Post Mon, Jul 12 2021, 11:23 pm
Have any of you tried goats milk, raw or otherwise? I’ve used it to treat herpes and other mouth ulcers but google says it has many anti-viral anti-inflammatory properties. I grew up on organic goats milk and I’m kind of curious if that’s why my immune system is so good now. I hardly ever get sick even though I was sick a lot as a kid.
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