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




Hotpink
 

Post Tue, Jul 13 2021, 11:00 am
amother [ Hyssop ] wrote:
If you’re just looking for alternatives to meds then functional medicine probably isn’t what you’re looking for.

Can you explain more?
Not looking for alternative to meds as much as I’m looking to get my whole body to a healthy place.

(I was just triggered as to the other poster because I don’t believe that therapy is not important too for me. I don’t believe that health alone can get rid of my memories or understand my triggers or learn to love myself
I feel that both need to be there for me at this point- kind of top down and bottom up)

Please elaborate!
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amother




Hotpink
 

Post Tue, Jul 13 2021, 11:01 am
amother [ Hyssop ] wrote:
I usually try to find real life or trustworthy social network recommendations . If you share your location I can try to help.

I’m in Brooklyn
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amother




Chocolate
 

Post Tue, Jul 13 2021, 11:05 am
amother [ Hotpink ] wrote:
Can you explain more?
Not looking for alternative to meds as much as I’m looking to get my whole body to a healthy place.

(I was just triggered as to the other poster because I don’t believe that therapy is not important too for me. I don’t believe that health alone can get rid of my memories or understand my triggers or learn to love myself
I feel that both need to be there for me at this point- kind of top down and bottom up)

Please elaborate!


If that was me I apologize again. Sincerely. I don’t recall saying that therapy isn’t needed. Just the opposite. Both me and my kids are all in therapy, various different forms of it too, I believe it’s an integral part of healing.
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amother




Hotpink
 

Post Tue, Jul 13 2021, 11:08 am
amother [ Chocolate ] wrote:
If that was me I apologize again. Sincerely. I don’t recall saying that therapy isn’t needed. Just the opposite. Both me and my kids are all in therapy, various different forms of it too, I believe it’s an integral part of healing.

Oh! Then I was the one that misunderstood!
❤️
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amother




OP
 

Post Tue, Jul 13 2021, 11:11 am
amother [ Hotpink ] wrote:
For myself - for medical and emotional issues - I’d love to try natural things before I turn to meds.

(No pandas here- I have ptsd from csa and other medical issues)

Accessing the Healing Power of the Vagus Nerve was a great book for me. It has some exercises to do but that wasn't even why I loved it so much. It explains very well how the nerves that are related to fight or flight and the nerves related to social engagement are effected by trauma. It was a great read and I highly recommend it. It also helped me realize that craniosacral therapy is a very crucial part of healing.
Hatzlacha and Refua Shelaima!
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amother




OP
 

Post Tue, Jul 13 2021, 11:19 am
amother [ Junglegreen ] wrote:
Can you tell us how your kids are doing today. Are they somewhat better? Much better?
Have you found any one thing that you can say is a must for other sufferers to do to help?
If there are other moms who’s children are completely cured can you chime in and share how you got to cured?

One is doing fantastic (between the occasional strep infection) the other was much sicker in the first place-not just pandas, other related autoimmune type health issues- and is doing better. I also haven't taken this second one for much bodywork which I intend to start doing in August. I haven't yet done it consistently for her cuz of the huge financial burden this illness has taken on my family.
I do think craniosacral therapy is a must. Even once the infections are gone, the body does not revert on its own, for some reason. Pandas puts the body into a constantly heightened state, hence the anxiety, rage, sleep issues, inattentiveness. CST calms the nervous system and allows for social engagement, emotional regulation, attentiveness.

Also, something I just learned is that if a child has a high arched palate, which often is seen with tongue ties, it's actually putting pressure on the limbic system of the brain. Releasing that pressure with visceral manipulation done by a craniosacral therapist can make a huge difference.
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amother




Hotpink
 

Post Tue, Jul 13 2021, 11:21 am
You sound like an amazing intelligent women op! Good luck on your journey
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amother




DarkViolet
 

Post Tue, Jul 13 2021, 11:57 am
Can you share which craniosacral therapist you use and where he/she is located?
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amother




Red
 

Post Tue, Jul 13 2021, 12:13 pm
any recommendation for a craniosacral therapist in Lakewood with experience with PANDAS? And what does such therapy cost?
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amother




Hyssop
 

Post Tue, Jul 13 2021, 1:20 pm
amother [ Hotpink ] wrote:
Can you explain more?
Not looking for alternative to meds as much as I’m looking to get my whole body to a healthy place.

(I was just triggered as to the other poster because I don’t believe that therapy is not important too for me. I don’t believe that health alone can get rid of my memories or understand my triggers or learn to love myself
I feel that both need to be there for me at this point- kind of top down and bottom up)

Please elaborate!
Only because if you want to pursue functional medicine model for ptsd, you have to kind of buy in to the idea that the trauma has some sort of measurable, treatable effect on your body. Not just on your psyche. And also because functional medicine addresses root causes, it doesn’t simply offer alternatives to allopathic drugs (all of which have their place in medicine and healing). This doesn’t have to be a substitute for therapy, I see them working in tandem all the time. Like you said, bottom up instead of just top down.
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amother




Hyssop
 

Post Tue, Jul 13 2021, 1:27 pm
amother [ OP ] wrote:
One is doing fantastic (between the occasional strep infection) the other was much sicker in the first place-not just pandas, other related autoimmune type health issues- and is doing better. I also haven't taken this second one for much bodywork which I intend to start doing in August. I haven't yet done it consistently for her cuz of the huge financial burden this illness has taken on my family.
I do think craniosacral therapy is a must. Even once the infections are gone, the body does not revert on its own, for some reason. Pandas puts the body into a constantly heightened state, hence the anxiety, rage, sleep issues, inattentiveness. CST calms the nervous system and allows for social engagement, emotional regulation, attentiveness.

Also, something I just learned is that if a child has a high arched palate, which often is seen with tongue ties, it's actually putting pressure on the limbic system of the brain. Releasing that pressure with visceral manipulation done by a craniosacral therapist can make a huge difference.
So interesting about the arched palate! We juuust started exploring mouth/jaw/tongue physiology in the context of pandas and brain inflammation. We are looking into the myobrace, hoping it will address enlarged tonsils down the line?
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amother




Hyssop
 

Post Tue, Jul 13 2021, 1:30 pm
amother [ DarkKhaki ] wrote:
A few amothers have mentioned homeopathy. Who do you go to for that? What is the general cost of the treatment?
We are using a practice in California that does virtual appointments. The cost is 600 for the initial consult that lasts 2-3 hrs, and 150 for monthly follow ups to discuss symptoms, change remedies or doses or potencies. The remedies themselves cost about 10 dollars.
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amother




DarkKhaki
 

Post Tue, Jul 13 2021, 2:28 pm
amother [ Hyssop ] wrote:
We are using a practice in California that does virtual appointments. The cost is 600 for the initial consult that lasts 2-3 hrs, and 150 for monthly follow ups to discuss symptoms, change remedies or doses or potencies. The remedies themselves cost about 10 dollars.

Thank you! Please post the name of the practice if you find that you get results.
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amother




Cornsilk
 

Post Tue, Jul 13 2021, 2:34 pm
amother [ DarkKhaki ] wrote:
There seem to be so many children and families struggling with this now. Anyone else wondering why this is happening so much?


Because it’s more accepted in some communities to say your child has pandas than asd or mental illness.
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amother




Nemesia
 

Post Tue, Jul 13 2021, 2:54 pm
amother [ Hyssop ] wrote:
We are using a practice in California that does virtual appointments. The cost is 600 for the initial consult that lasts 2-3 hrs, and 150 for monthly follow ups to discuss symptoms, change remedies or doses or potencies. The remedies themselves cost about 10 dollars.


us too! fyi they just raised their rates to 700 and 175. How long have you been with the practice, we started a couple months ago, hard to know if the gains are true gains yet...
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amother




Red
 

Post Tue, Jul 13 2021, 3:09 pm
amother [ Cornsilk ] wrote:
Because it’s more accepted in some communities to say your child has pandas than asd or mental illness.


It's actually because the world is learning more and more about it. What was once believed to be asd and mental illness, is now often "just" PANDAS.
I had a girl in my class that had a terrible throat-clearing tic, along with some other quirky issues. I remember specifically it started quite suddenly- I was good friends with her, and all her social skills went out the window then. Looking back, I have such a strong feeling it was PANDAS. (she later outgrew most of it, after a number of years)
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amother




OP
 

Post Tue, Jul 13 2021, 3:51 pm
amother [ Hyssop ] wrote:
So interesting about the arched palate! We juuust started exploring mouth/jaw/tongue physiology in the context of pandas and brain inflammation. We are looking into the myobrace, hoping it will address enlarged tonsils down the line?

Would love to know too. Please keep up posted!
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amother




Hyssop
 

Post Tue, Jul 13 2021, 4:26 pm
amother [ Cornsilk ] wrote:
Because it’s more accepted in some communities to say your child has pandas than asd or mental illness.
Or maybe it’s just more accurate? As our understanding of mental illness evolves? Susannah Cahalan, a journalist for the NYP, put out 2 amazing books on this topic, one called brain on fire, my month of madness, About her own experience with autoimmune encephalitis as an adult, the other called the great pretender, exploring the history of mental illness, the dsm, psychology, and how this dichotomy between brain and mind came to be. Both worth reading. Keep in mind that pandas/pans/Lyme/AE and asd/adhd/ocd/xyz mental illness are not mutually exclusive. The latter describe a grouping of symptoms commonly seen together while the former point to a medical cause for said symptoms.
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amother




Hyssop
 

Post Tue, Jul 13 2021, 4:29 pm
amother [ Nemesia ] wrote:
us too! fyi they just raised their rates to 700 and 175. How long have you been with the practice, we started a couple months ago, hard to know if the gains are true gains yet...
Hey, would love to connect! Saw their email about the rate increase Sad We started with them about 2-3 months ago. No real gains here yet either. Are you in their FB group?
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amother




Nemesia
 

Post Wed, Jul 14 2021, 1:58 am
amother [ Hyssop ] wrote:
Hey, would love to connect! Saw their email about the rate increase Sad We started with them about 2-3 months ago. No real gains here yet either. Are you in their FB group?


yes, I'm on that group. I was on other pandas/pans groups and kept seeing RN suggested and when I saw so many were talking about positive results I had to give it a try. I hope it works for us both!
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