Holistic Treatments for PANDAS

[kthomas]

Are there any holistic treatments for PANDAS?

[amyjoy]

I do not believe there have been any reported cases of curing PANDAS using 100% holistic (as in completely non-chemical) products that we know of. If there were, and there was a holistic cure, we'd all be doing it and this forum would be emptied out.

 

There are many ways that holistic solutions are part of a good integrative care plan for a child with PANDAS, such as for GI support or immune support, cranial assessment/manipulation or whatever is right for a particular child's situation. Many of us have found supportive therapies that have helped our children. But as far as i have heard, no one has reported a total cure using all natural products. please inform us if you know of anything.

[thereishope]

This is the only thing I've ever come across

http://hpathy.com/homeopathy-papers/pandas-%E2%80%93-a-carcinosin-case/

[amyjoy]

Well that's an interesting link. I sent this homeopathy practitioner an email to find out more about this particular case, maybe she's open to sharing more info.

 

In terms of my son, we have tried almost every holistic avenue to cure his PANDAS, before and after we knew it was PANDAS. I work in an integrative practice, so my inclination is natural means but am willing to include the medical because to me, that is "holistic" - the inclusion of all of it.

 

We have done herbs and supplements, enzymes, all kinds of gland and organ supports, acupuncture, chinese herbs, a number of kinds of body work and body-based therapies, ayurveda, detox, anti-inflammatories, prayer, shaman healers, chiropractic, psyche meds including natural ones, gut and liver supports of all kinds, energy healers, reflexology, cranial sacral, psychotherapy, emdr, nlp, biofeedback, juicing, a zillion different versions of diets and allergy elimination, rotation, wheat free, gluten free, chemical free, dairy free, whatever free. Gosh, we have gone broke doing all these things while having Kaiser insurance that covered zero, plus they did zero of the testing he ultimately needed except they were willing to do an ASO titer (which when it came back as 600 they just shook their heads and suggested 5 days of zithro).

 

Nothing in and of itself eliminated the situation. At different times, different things did help. There are a couple of main things.

 

THE FIRST was, a specific form of cranial work that DS has had, helped him tremendously from day 1 before we ever knew it was PANDAS. We had spent 1 1/2 years thinking this was a psych issue. Then our third therapist had the brilliance, after 2 appts, to say hey, this is an organic tic disorder not a psych issue, and she referred us to a chiro who specializes in neuro and cranial stuff, a lifesaver, literally. All we knew is that it transformed our child from an 11year old becoming less and less functional and barking and shaking and ticcing and up all night into a sleeping much more, no more verbal tics and definite coordination improvement almost immediately. Really it just took the edge off and helped us see more of DS's baseline without the added cranial structural stuff he had for whatever reason putting extra pressure on already inflamed brain tissue and cranial nerves. It was a Godsend and continues to help tremendously, although he's in such a different place now. It also was the first clue that what we were dealing with was inflammatory, as that is not a typical tourette's scenario.

 

SECONDLY - testing. Thorough and complete and accurate testing. Doing a full GI workup and the right blood testing gave the kind of information that was targeted and showed us how to tackle it head on. We would never have known about the celiac if we hadn't gone out of Kaiser's system (their one TTG test showed negative but that's not a great test) or about the clostridia in his gut. Or the methylation problems. Or certainly about the PANDAS. But getting off of Gluten changed his entire existence from a puffy achy bloaty pastey waterlogged child to a pain-free (almost) unbloated less waterlogged almost normal looking child with a tad of color in his cheeks. and the stomach aches went away completely and stinky awful poops. It took alot of supplements to clean up his gut and then help rebuild his damaged intestine and intestinal lining, months, before we felt we could even start him on antibiotics (we found out about the PANDAS at the same time we found out about the celiac).

 

THIRDLY - natural anti-inflammatories esp Avipaxin, which reduces inflammatory cytokines in brain, also some very cooling chinese herbs, and methylation/liver support and magnesium magnesium magnesium, and oils.

 

AND FINALLY - IVIG. 2 months post IVIG, oh my gosh. The other night after a basketball game one mom came up to me and said that parents were remarking in the stands at my son's extraordinary progress and coordination improvement on the court in the past 2 months. They did not know what he has been dealing with. Life is better so so much better in my house.

 

OH, one last thing we are now working on. A few weeks ago, my DS had this wierd stomach feeling and then it made it that he felt he couldn't take a deep breath or something, and it created a few weeks of anxiety as we ran our circuit of healers and no one could make this go away. It occurred to me that perhaps, if you or I had originally felt this symptom or set of symptoms, we probably would have noticed it and then not really stressed over it and more than likely it would have eventually gone away. But because my dear boy has grown up mostly ill his whole life, when he gets a symptom his entire little being focuses on it and worries over it, and maybe, makes it bigger, i don't know. So i decided that maybe a part of him had to remember his healthy self inside him, and help him to maybe re-wire some thing in there. I had this picture of like, a tuning fork inside him resonating out, hello, this is who you are despite all of your years of suffering and illness, and maybe remembering this would help him. So i brought him to a somatic therapist, who also does clinical hypnotherapy and calls himself a "psycho biologist" or maybe a bio psychologist? Anyway, after 2 sessions, all of this breathing stuff is gone and DS is learning some wonderful skills about dropping down into some healing space and bringing his power back together as a whole being.

 

All of this said, he's still on antibiotics and a host of supplements and will be for however long it takes. And i'm still broke. But i think of the term "holistic" as being very inclusive, so that everything is open territory and that we can pull from all realms of healing, and that each child's path is unique.

 

Anyway, sorry for the long post, but maybe something in here might help someone.

[VickyLH]

I just found this website which you might find helpful.

 

http://www.pandasconnection.com/apps/videos/videos/show/12296049-out-of-the-fog-into-the-light-2-wmv

 

-Vicky

[kthomas]

Well that's an interesting link. I sent this homeopathy practitioner an email to find out more about this particular case, maybe she's open to sharing more info.

 

In terms of my son, we have tried almost every holistic avenue to cure his PANDAS, before and after we knew it was PANDAS. I work in an integrative practice, so my inclination is natural means but am willing to include the medical because to me, that is "holistic" - the inclusion of all of it.

 

We have done herbs and supplements, enzymes, all kinds of gland and organ supports, acupuncture, chinese herbs, a number of kinds of body work and body-based therapies, ayurveda, detox, anti-inflammatories, prayer, shaman healers, chiropractic, psyche meds including natural ones, gut and liver supports of all kinds, energy healers, reflexology, cranial sacral, psychotherapy, emdr, nlp, biofeedback, juicing, a zillion different versions of diets and allergy elimination, rotation, wheat free, gluten free, chemical free, dairy free, whatever free. Gosh, we have gone broke doing all these things while having Kaiser insurance that covered zero, plus they did zero of the testing he ultimately needed except they were willing to do an ASO titer (which when it came back as 600 they just shook their heads and suggested 5 days of zithro).

 

Nothing in and of itself eliminated the situation. At different times, different things did help. There are a couple of main things.

 

THE FIRST was, a specific form of cranial work that DS has had, helped him tremendously from day 1 before we ever knew it was PANDAS. We had spent 1 1/2 years thinking this was a psych issue. Then our third therapist had the brilliance, after 2 appts, to say hey, this is an organic tic disorder not a psych issue, and she referred us to a chiro who specializes in neuro and cranial stuff, a lifesaver, literally. All we knew is that it transformed our child from an 11year old becoming less and less functional and barking and shaking and ticcing and up all night into a sleeping much more, no more verbal tics and definite coordination improvement almost immediately. Really it just took the edge off and helped us see more of DS's baseline without the added cranial structural stuff he had for whatever reason putting extra pressure on already inflamed brain tissue and cranial nerves. It was a Godsend and continues to help tremendously, although he's in such a different place now. It also was the first clue that what we were dealing with was inflammatory, as that is not a typical tourette's scenario.

 

SECONDLY - testing. Thorough and complete and accurate testing. Doing a full GI workup and the right blood testing gave the kind of information that was targeted and showed us how to tackle it head on. We would never have known about the celiac if we hadn't gone out of Kaiser's system (their one TTG test showed negative but that's not a great test) or about the clostridia in his gut. Or the methylation problems. Or certainly about the PANDAS. But getting off of Gluten changed his entire existence from a puffy achy bloaty pastey waterlogged child to a pain-free (almost) unbloated less waterlogged almost normal looking child with a tad of color in his cheeks. and the stomach aches went away completely and stinky awful poops. It took alot of supplements to clean up his gut and then help rebuild his damaged intestine and intestinal lining, months, before we felt we could even start him on antibiotics (we found out about the PANDAS at the same time we found out about the celiac).

 

THIRDLY - natural anti-inflammatories esp Avipaxin, which reduces inflammatory cytokines in brain, also some very cooling chinese herbs, and methylation/liver support and magnesium magnesium magnesium, and oils.

 

AND FINALLY - IVIG. 2 months post IVIG, oh my gosh. The other night after a basketball game one mom came up to me and said that parents were remarking in the stands at my son's extraordinary progress and coordination improvement on the court in the past 2 months. They did not know what he has been dealing with. Life is better so so much better in my house.

 

OH, one last thing we are now working on. A few weeks ago, my DS had this wierd stomach feeling and then it made it that he felt he couldn't take a deep breath or something, and it created a few weeks of anxiety as we ran our circuit of healers and no one could make this go away. It occurred to me that perhaps, if you or I had originally felt this symptom or set of symptoms, we probably would have noticed it and then not really stressed over it and more than likely it would have eventually gone away. But because my dear boy has grown up mostly ill his whole life, when he gets a symptom his entire little being focuses on it and worries over it, and maybe, makes it bigger, i don't know. So i decided that maybe a part of him had to remember his healthy self inside him, and help him to maybe re-wire some thing in there. I had this picture of like, a tuning fork inside him resonating out, hello, this is who you are despite all of your years of suffering and illness, and maybe remembering this would help him. So i brought him to a somatic therapist, who also does clinical hypnotherapy and calls himself a "psycho biologist" or maybe a bio psychologist? Anyway, after 2 sessions, all of this breathing stuff is gone and DS is learning some wonderful skills about dropping down into some healing space and bringing his power back together as a whole being.

 

All of this said, he's still on antibiotics and a host of supplements and will be for however long it takes. And i'm still broke. But i think of the term "holistic" as being very inclusive, so that everything is open territory and that we can pull from all realms of healing, and that each child's path is unique.

 

Anyway, sorry for the long post, but maybe something in here might help someone.

 

Thank you for your insight and sharing your knowledge. Your experiences open possibilities for our ds and finding relief for his symptoms.

[SSS]

Well that's an interesting link. I sent this homeopathy practitioner an email to find out more about this particular case, maybe she's open to sharing more info.

 

In terms of my son, we have tried almost every holistic avenue to cure his PANDAS, before and after we knew it was PANDAS. I work in an integrative practice, so my inclination is natural means but am willing to include the medical because to me, that is "holistic" - the inclusion of all of it.

 

We have done herbs and supplements, enzymes, all kinds of gland and organ supports, acupuncture, chinese herbs, a number of kinds of body work and body-based therapies, ayurveda, detox, anti-inflammatories, prayer, shaman healers, chiropractic, psyche meds including natural ones, gut and liver supports of all kinds, energy healers, reflexology, cranial sacral, psychotherapy, emdr, nlp, biofeedback, juicing, a zillion different versions of diets and allergy elimination, rotation, wheat free, gluten free, chemical free, dairy free, whatever free. Gosh, we have gone broke doing all these things while having Kaiser insurance that covered zero, plus they did zero of the testing he ultimately needed except they were willing to do an ASO titer (which when it came back as 600 they just shook their heads and suggested 5 days of zithro).

 

Nothing in and of itself eliminated the situation. At different times, different things did help. There are a couple of main things.

 

THE FIRST was, a specific form of cranial work that DS has had, helped him tremendously from day 1 before we ever knew it was PANDAS. We had spent 1 1/2 years thinking this was a psych issue. Then our third therapist had the brilliance, after 2 appts, to say hey, this is an organic tic disorder not a psych issue, and she referred us to a chiro who specializes in neuro and cranial stuff, a lifesaver, literally. All we knew is that it transformed our child from an 11year old becoming less and less functional and barking and shaking and ticcing and up all night into a sleeping much more, no more verbal tics and definite coordination improvement almost immediately. Really it just took the edge off and helped us see more of DS's baseline without the added cranial structural stuff he had for whatever reason putting extra pressure on already inflamed brain tissue and cranial nerves. It was a Godsend and continues to help tremendously, although he's in such a different place now. It also was the first clue that what we were dealing with was inflammatory, as that is not a typical tourette's scenario.

 

SECONDLY - testing. Thorough and complete and accurate testing. Doing a full GI workup and the right blood testing gave the kind of information that was targeted and showed us how to tackle it head on. We would never have known about the celiac if we hadn't gone out of Kaiser's system (their one TTG test showed negative but that's not a great test) or about the clostridia in his gut. Or the methylation problems. Or certainly about the PANDAS. But getting off of Gluten changed his entire existence from a puffy achy bloaty pastey waterlogged child to a pain-free (almost) unbloated less waterlogged almost normal looking child with a tad of color in his cheeks. and the stomach aches went away completely and stinky awful poops. It took alot of supplements to clean up his gut and then help rebuild his damaged intestine and intestinal lining, months, before we felt we could even start him on antibiotics (we found out about the PANDAS at the same time we found out about the celiac).

 

THIRDLY - natural anti-inflammatories esp Avipaxin, which reduces inflammatory cytokines in brain, also some very cooling chinese herbs, and methylation/liver support and magnesium magnesium magnesium, and oils.

 

AND FINALLY - IVIG. 2 months post IVIG, oh my gosh. The other night after a basketball game one mom came up to me and said that parents were remarking in the stands at my son's extraordinary progress and coordination improvement on the court in the past 2 months. They did not know what he has been dealing with. Life is better so so much better in my house.

 

OH, one last thing we are now working on. A few weeks ago, my DS had this wierd stomach feeling and then it made it that he felt he couldn't take a deep breath or something, and it created a few weeks of anxiety as we ran our circuit of healers and no one could make this go away. It occurred to me that perhaps, if you or I had originally felt this symptom or set of symptoms, we probably would have noticed it and then not really stressed over it and more than likely it would have eventually gone away. But because my dear boy has grown up mostly ill his whole life, when he gets a symptom his entire little being focuses on it and worries over it, and maybe, makes it bigger, i don't know. So i decided that maybe a part of him had to remember his healthy self inside him, and help him to maybe re-wire some thing in there. I had this picture of like, a tuning fork inside him resonating out, hello, this is who you are despite all of your years of suffering and illness, and maybe remembering this would help him. So i brought him to a somatic therapist, who also does clinical hypnotherapy and calls himself a "psycho biologist" or maybe a bio psychologist? Anyway, after 2 sessions, all of this breathing stuff is gone and DS is learning some wonderful skills about dropping down into some healing space and bringing his power back together as a whole being.

 

All of this said, he's still on antibiotics and a host of supplements and will be for however long it takes. And i'm still broke. But i think of the term "holistic" as being very inclusive, so that everything is open territory and that we can pull from all realms of healing, and that each child's path is unique.

 

Anyway, sorry for the long post, but maybe something in here might help someone.

 

AMYJOY: May I ask? I am also in CA with Kaiser insurance. My DAN! told me he worked with a SO. CA Kaiser Dr. who was able to approve IVIG- and I have heard of 1 IVIG being done at a Kaiser hospital in Walnut Creek.

I am waiting for my CAM test to come back, and then go make my case to Kaiser.

Any tips for me? I'm very sorry to hear you did not get help from them- tho, not surprised. :-(

Glad to hear your son is doing well!

Sarah &

Samantha 5

[Johnsmom]

What specific form of cranial sacral therapy did your ds have? Great story!

[Stephanie2]

Wow, amyjoy! We have done a lot of that as well, and the one thing I keep finding myself being forced to go back to is azith prophylactic. We also get the clostridia, gut issues, etc. Would you mind telling me how you healed the leaky gut? Something I need to work on around here. Starting quercetin soon, considered SCD, then said "nah...". LOL!

 

I would also like to hear about cranial sacral. Considered that for ds6, a little nervous to try for ds2 due to his chiari malformation (although maybe it would help).

 

We consider what we do to be integrative b/c we do have to rely on medicine, though we prefer not to.

 

I also want to mention that I came across a woman who claims that her homeopathic practitioner has helped tremendously with pandas. His name is Pierre Fontaine out of NYC. I contacted his office and his wait list is backed up until Oct 2011! He trained another woman to work with him and she is available much sooner. Although I am starting to look into lyme/llmd's, I am strongly considering Pierre or his assistant. (I believe he is highly regarded within the autism community). When I contacted their office, they knew exactly what pandas was and acted like it was old hat for him...

[mom love]

kthomas, I believe from the very core of my heart and soul that there are "non conventional" paths to healing. I believe in energy healing and in traditional chinese medicine and in homeopathy. That said,I believe you have to find the right practitioner. We have only tried energy healing with a very expensive healer at a time when my daughter did not have symptoms (was in pandas/pitands remission at the time). We have no idea if it did anything but the healer was supposed to have done miraculous things with others (non pandas). The pitands did come back, but we only saw her a couple of times and she told us it would take alot more. We had become doubtful of her and it was very expensive.We also tried an osteopath who did cranial sacral but again have no idea if it did anything because she was in remission at the time. She just laid there and he did not do much except lay his hands under her head. At one time I thought he was falling asleep. Again, I think it all depends on finding the right practitioner. I still believe in it nonetheless.

 

I think that there are many who have success with holistic measures, I think those people stop posting on this forum and go on living their lives. I also think they are afraid of posting because they don't want to be bombarded with requests about it or have people question it. You will find many testimonials by googling autism topics of healing. Many parents of autistic kids have created their own blogs in order to help others. I have read on the TS forum great success with NAET, an allergy elimination acupuncture, BAX 3000 a laser/light version of NAET and much success with supplements. We have done all the basics of NAET and are considering doing more now.

 

Stephanie, I was going to pm you about Pierre Fontaine when I saw you mention considering homeopathy. He is booking out til October and he charges $900.00. His trainee charges a bit less. I did read a blog from a woman who had a "cure" for her son's autism with a homeopath (along with other things) and she is a homeopath now and I believe she is in Florida now. If I can find that again I will send you her link.

 

I too am interested in cranial sacral and the types or "names" for the types of practitioners and how to find them.

[smartyjones]

I too am interested in cranial sacral and the types or "names" for the types of practitioners and how to find them.

 

 

check out the advisory board of this forum

CranioSacral Therapy

and Acupuncture

 

John Upledger, DO,FAAO

 

he has a training center in Florida -- very good info on the website http://www.upledger.com/

Edited January 30, 2011 by smartyjones

[amyjoy]

RE: cranial work

 

In terms of the exact cranial work, it was not cranial sacral although we did try that. This is called, I believe, craniopathy. It entails a more rigorous resetting of the bones of DS's head. He literally moved the sphenoid bone, the nose, one cheek bone, jaw, palette, etc into place a number of times until it held.

 

I can tell you that when we went to see this Dr., my DS's tics and imbalances were at an all time worst worst awful. But the very first treatment (which ended up being on a Sunday evening at this DR's house because the referral came in urgently from a good friend of his) resulted in DS going to sleep that night like an almost normal person, for the first time in 2 years. It was staggering. This was the sunday before TG 3 years ago. We saw him every day till TG and by the next week, the vocal tics were practically gone. And by the week of Christmas, we actually went to the mall, my (then) husband DS and me, walked around and went to a movie, like almost normal people. It was the first time we were out in 2 years. I had hopes that went through the roof.

 

I am not saying of course this is a cure for PANDAS but it is #1 in my tool box and the first place we turn for wierd symptoms. What it did was to re-establish DS's baseline so we could see more and more what we were dealing with. And its how we realized the inflammatory nature of his stuff. After that first treatment, when the DR said to also give DS some ibuprofen that night to help the treatment settle in, wow, DS's response was quite dramatic.

 

If you live in northern CA i'd be happy to share this referral with you.

[amyjoy]

Steph,

RE: Leaky Gut.

 

I think its critical to find out why someone has leaky gut. It doesn't happen randomly, of course. So the way to heal it does depend on the reason it exists.

 

In DS' case, he had leaky gut to due undiagnosed celiac. Celiac responses to gluten turn an intestine to something akin to chopped liver. The inflammation and bogginess of the tissue matrix creates space between the cells, little teeny spaces that allow entrance of molecules that are normally too big to pass through. This can include partially digested foods (creating allergies/sensitivities) and bugs.

 

Doing a really good stool test will help to sort out the proper pathway. Is there inflammation in the gut, or immune suppression, or overactivity? Or dysbiosis, or frank infection? Each one is dealt with differently. I really like the Metametrix 2100 panel to help with this, it has a full chemistry in addition to the microbial study that is DNA screened.

 

SO, in DS' case, stopping the gluten assault was the first thing. Secondly, cleaning up the clostridia and a little mold in there with herbs, the right probiotics and tissue-mending supplements. Drinking a high-grade whole leaf aloe vera a few times a day is easy for kids. We especially like the aloe concentrate by Univera, high grade plus you only need an ounce at a time, or you could even start with a tbs of the concentrate with little ones. And I think it tastes the best. Just be sure whatever you get is NOT inner fillet.

 

Then the powders that help restore the ingredients the body would use to repair the tissues. These are typically rich in glutamine and contain mucilaginous / hydrophilic properties. Each child again is different - some are allergic to shellfish for example, so you would not use the powders with glucosamine unless it is vegan and you have to look hard for those. What we used to start this rebuilding process is the NEuroscience GI repair kit, which i like alot for this exact situation (each child IS different) as it also balances TH1/TH2 responses, plus a glutamine rich protein powder (palatable to each child). We really like the Xymogen i5 formulas. They are hypoallergenic, anti inflammatory, yummy, contain lots of immunoglobulins as well as arabinogalactins, one of my favorite things to help restore gut immunity without overstimulating. We also really like the Natura Beyond Whey protein alot, and have used one of the Metagenics proteins for GI restoration but i can't remember which ones.

 

Here are some other examples of GI barrier support products we would use in our office for a child like DS:

http://www.emersonecologics.com/Products/EmersonMain/PID-GIBEN.aspx

http://www.emersonecologics.com/Products/EmersonMain/PID-GIREV.aspx

 

But I can't stress enough that the gut evaluation is so important and the treatment is tailored.

 

Does that help?

[formedbrds]

[

Edited July 16, 2011 by formedbrds

[formedbrds]

[

Edited July 16, 2011 by formedbrds