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Seeking Natural Remedies


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If you go to "keyword" at the bottom of the forum screen, you can search for more results. What I suggest is if the person hasn't posted in awhile is to message them for more info to ensure the request gets bounced to their email.

 

Here is one thread about homeopathic "remedies". I know I've read more though.

 

http://www.latitudes.org/forums/index.php?...;hl=homeopathic

 

As you begin to add supplements or try different protocals, take it slow. PANDAS kids can be sensitive and respond different than the average person. By taking it slow, you will be able to pinpoint what is helping and what is hurting (if setbacks should arrise).

 

You can also add Omega 3's and DHA to her regimine. That is very good for the brain.

Edited by Vickie
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Hi

 

my son does not have PANDAS but does likely have a PITAND component to his genetic Tourette Syndrome & OCD, and he also has autoimmune Crohn's Disease

 

I have a link in my signature about the natural treatments he has been on that have helped him tremendously

 

I am not suggesting that any child in PANDAS crisis should not be treated medically with antibiotics etc.

Just responding to your question about natural antibiotics and antifungals

 

the best we have personally found are Monolaurin (lauric acid) which is a remarkable all purpose antimicrobial, Olive Leaf extract, Oil of Oregano, Candida Clear by Now, and to prevent viral flares, the amino acid L-lysine. Garlic, honey, turmeric etc also have antimicrobial effects. Mastic Gum (mastica) is known to eradicate H.pylori and believed to also have other antibacterial properties. There are more, but those are the ones we have experience with

 

I agree with Vickie that it is always a good idea to start one thing at a time and always at the lowest dose and then work up.

 

we have always sought guidance from Integrative physicians (doctors who have a conventional MD or DO and have then gone on to specialize in naturopathic/alternative/complementary medicine

 

there is a lot of info on natural remedies on the Tourette/tics forum here

http://www.latitudes.org/forums/index.php?showforum=1

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Thought I'd add to the list what our son takes and why.

 

DAILY SUPPLEMENTS:

 

Bentonite Clay: 1/2 cup in morning, 1/2 cup in afternoon and 1/2 cup in evening (detox)

 

It helps to form up the acids in your bowel that your bowel is not healthy enough to form up on its own.

 

"The Canadian Journal of Microbiology states that bentonite clay can absorb pathogenic viruses, aflatoxin, pesticides and herbicides. The negatively charged minerals in the clay attract and bind with the positively charged toxins.

 

Bentonite has proved useful and healing in a variety of ways. These include eliminating painful ganglion cysts, improving intestinal regularity, reliving chronic constipation, diarrhea, indigestion and ulcers, improving physical energy, clearing complexions, enhancing alertness, improving tissue and gum repair, increasing resistance to infections, removing intestinal parasites, allergy and hay fever relief, eliminating anemia and acne, neutralizing allergens, reducing heartburn and indigestion by absorbing excess stomach acids.

 

Bentonite Clay is probably best known for it’s internal detoxification, cleaning the lining of the colon. As the colon becomes cleaner, it is able to function properly in absorbing nutrients, thereby increasing energy, as well as adding 71 trace and ultra-trace minerals"

 

 

Methyl- Vitamin B-12: 10 x 5000 m.g. per day (nerve damage)

 

"B-12 is helpful with persistent fatigue, depression, nervous system disorders, nerve pain or discomfort. It is also extremely helpful for kids with altered brain chemistry and neurological problems like autism, ADD, Tourette's, seizures, etc. It is a great crutch to give you the mental strength to handle long healing process."

 

'This works, crutches don't': Book by Donna Pessin.... The nutritionist we are working with for all our kids.

 

 

HIGH DOSE PROBIOTICS: Our son takes a trillion units per day (10 pills in the morning and 10 pills in the evening @ 50 billion per pill) this amount is about 1,000 time stronger than any over counter product (Good Bacteria - Repair Gut Flora)

 

Here is the link to why: http://markbrudnak.com/Articles/probiotics...immune_anti.htm

 

Great benefits diagram: http://www.customprobiotics.com/health_benefits.htm

 

 

Fish Oil: Our son takes 1000 m.g. per day (Anti-Inflammatory)

Edited by SF Mom
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However, I am seeking natural remedies. Has anyone had success with that? Can you point me to boards, websites, or practitioners with information about successful natural treatments? Aren't there natural antibiotics and antifungals?

May

 

 

i have been working with non-pharmaceutical remedies with my son. we were using a few products from Pleo Sanum. i liked these products - mainly targeted at strep and cell wall deficient bacteria. try looking up biomedicine.com. basically, the theory is that our bodies are made up of many viruses, bacteria, etc. the problem isn't that we have these, it's that they're not in balance. these remedies work to bring the body back into a symbiotic relationship, rather than trying to completely eradicate the bacteria. kind of like the theory that once you have a herpes virus, you always have it, but it can be more or less of a problem.

 

we used pleo sanum for about 6 months. after a month or so, i thought i saw improvement, then he had a flu in the fall and relapsed. during that time, he was negative for strep. i'm not sure what to say about the success of pleo sanum. did the remedies keep the strep away? would he have been worse without the remedies? were the remedies doing nothing? would he have been worse with nothing? would he have been better on abx? were the remedies working for strep but lyme was troublesome? no way to be sure.

 

my son seemed to be doing 'okay' - not in crisis, functioning fairly well at home, mixed at school - but not to what i feel is a good state of health. he seemed to just have a collection of good and bad days rather than be on a healing path. i spoke with our dr about the possibility of lyme, which i didn't think he had b/c he had a completely non-reactive western blot and doesn't have any lyme symptoms that are not cross-over pandas symptoms. he referred us to another dr who is more versed in lyme.

 

this dr does believe my son has lyme as well as toxoplasma gondii infection - which has received recent press as being implicated in schizophrenia and ocd. he is treating him with a number of products - many from celletech. you can look up celletech.com. only been on these about 2 weeks.

 

when i first joined this forum, i posted a number of times asking how parents were judging their treatments. overwhelmingly, it was the clinical picture of their child.

 

i'm fairly familiar with mainstream alternative medicine and both these companies were completely new to me. i'm not sure where this new protocol will bring us. hopefully, somewhere good b/c we're targeting a couple other things than strep that seem to be a problem for him. really, it seems only time will tell.

 

good luck.

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I spent many months avoiding mainstream medicine and going holistic for PANDAS. The problem is that my son's condition is so darn advanced and he has so much inflammation that we really need to drop a bomb on PANDAS at this point (which is why I finally did IVIG a few days ago). That is not to say that the natural treatments didn't help. And once I get everything under control I will probably try to maintain with naturals.

 

Here is what I have tried: Oil of Oregano (I find this to be a real powerhouse for strep and viruses), Olive Leaf Extract (very popular PANDAS remedy among the autism communtiy), Fish Oil, Curcumin and Reishi and many other things to just boost the immune system overall (vitamin A, Larix, Sambucus, Zinc, Vit. C).

 

I have to say that I really did notice a difference when I tried Olive Leaf Extract 3 times a day, and then I added Reishi b/c of all of it's autoimmune benefits, and immune modulating and anti inflammatory benefits (not to mention it has direct action against strep). With Reishi I notice that my son seems happier on the days that he takes it and not so happy on the days he does not take it. Almost as beneficial as ibuprofen in that regard, to reduce inflammation. I try not to use Ibuprofen too often, but it really is a lifesaver some days!

 

If you do a google search on the benefits of Reishi, you will be amazed. I did a lot of research on a good Reishi product and this is the company I order it from (Nuskin/pharmanix). It needs to be a standardized extract.

 

As far as antifungals, there are so many. I really like Diflucan when we are in a real bind, but I also see noticeable effects from Oil of Oregano and Caprylic Acid. I, personally, take caprylic acid when I feel a vaginal yeast infection coming on and it takes it away within 24 hours.

 

Stephanie

Edited by Stephanie2
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..............and many other things to just boost the immune system overall

Stephanie

 

A question...my son has Crohn's Disease, which is also an autoimmune class of illness, like PANDAS is

 

we have been advised never to knowingly "boost" his immune system, and were also cautioned to stay away from drastic immuno supressive treatments...... and rather to aim for his immune system to be modulated or "balanced"

 

have you been advised to boost the immune system for PANDAS?

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Parents4eyes,

 

Have you read anything on the use of benfotiamine for uveitis? We have a couple of threads with some info that you might want to read thru. Some of the symptoms of Beriberi seem to correlate with some reported PANDAs symptoms.

 

here are the two threads with a couple of excepts from those threads below

 

vision problems

http://www.latitudes.org/forums/index.php?...vision+problems

 

PANDAS and floaters

http://www.latitudes.org/forums/index.php?...AS,and,floaters

 

Beriberi

 

https://health.google.com/health/ref/Beriberi

 

Overview

Beriberi is a disease in which the body does not have enough thiamine (vitamin B1).

 

Symptoms

Symptoms of dry beriberi include:

 

Difficulty walking

Loss of feeling (sensation) in hands and feet

Loss of muscle function or paralysis of the lower legs

Mental confusion/speech difficulties

Pain

Strange eye movements (nystagmus)

Tingling

Vomiting

 

excerpt

http://www.betterhealthresearch.com/news/v...dness-19159004/

 

QUOTE

A form of vitamin B1 could become a new and effective treatment for one of the world’s leading causes of blindness, according to Texas scientists.

 

Researchers from the University of Texas Medical Branch at Galveston have presented promising results achieved with benfotiamene, a fat-soluble form of vitamin B1 which is absorbed rapidly by the body and lacks negative side effects.

 

In their study, they injected laboratory rats with toxins that produce a reaction mimicking uveitis and noticed that when the rats were fed benfotiamene they failed to develop any signs of the inflammatory disorder.

 

 

about uveitis

 

http://autoimmunedisease.suite101.com/article.cfm/uveitis

 

As an autoimmune disorder, uveitis may occur alone or it may accompany other systemic autoimmune diseases such as rheumatoid arthritis, Bechet syndrome, sarcoidosis, Kawasaki disease, Reiter disease, psoriasis, ulcerative colitis, multiple sclerosis, systemic lupus erythematosus, or ankylosing spondylitis. Uveitis may also occur in AIDS, cytomegalovirus infection, syphilis, tuberculosis, Lyme disease, and in fungal infections.

 

 

http://www.iherb.com/Source-Naturals-Benfo...blets/7342?at=0

 

Benfotiamine is a more bioavailable derivative of thiamin (Vitamin B-1). Unlike normal thiamine, benfotiamine is fat-soluble and more physiologically active. It supports normal glucose utilization by stimulating transketolase, the enzyme essential for maintaining normal glucose metabolic pathways. Normal glucose levels are also vital for the promotion of endothelial cell health in the kidneys and retinas.

Edited by kim
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Chemar, you bring up a good point, I think I have heard not to give Vit. D for that reason. It makes sense that to boost the immune system then maybe you are boosting the autoimmune process as well. I also don't like the idea of steroids b/c of the immunosuppressive aspect. Also, I have heard that echinacea is not good in general b/c it stimulates the immune system too much (or something like that).

 

My son is under the care of a DAN doctor so they do things a little differently b/c most of their patients have more going on than just PANDAS. My son went into the DAN protocol with terrible immune issues: chronic ear infections (despite tubes), sinus infections, lung infections, asthma, severe croup and allergies. He does not have ANY of those problems anymore so for us I have no choice but to keep his immune system in top shape. However, it does seem that his PANDAS has advanced in the past year, so who knows. Maybe it would have gotten worse anyway. After all, he got 2 active strep infections in the past year that really did him in.

 

Either way I think we were headed for IVIG, and who knows maybe my son will be a rapid responder to IVIG b/c his immune system is so good? I know he responds well to antibiotics (problem is he can't tolerate high doses of antibiotics, hence the IVIG...).

 

Can you tell me more about where you heard that you should not enhance the immune system and why? I am interested in this (and trust me I have thought about stopping all of his supplements to let his immune system bottom out so that we could get low numbers on the immunology workup and then get IVIG coverage, but my husband and I decided that was too scary cuz you never know what he will be exposed to at that time).

 

Stephanie

..............and many other things to just boost the immune system overall

Stephanie

 

A question...my son has Crohn's Disease, which is also an autoimmune class of illness, like PANDAS is

 

we have been advised never to knowingly "boost" his immune system, and were also cautioned to stay away from drastic immuno supressive treatments...... and rather to aim for his immune system to be modulated or "balanced"

 

have you been advised to boost the immune system for PANDAS?

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Hi,

 

My daughter was diagnosed (sort of--her pediatrician didn't really believe in PANDAS but conceded it was possible) 2 years and 3 months ago when she was 6. We have used natural remedies almost exclusively, with the exception of several rounds of antibiotics for active strep infections. I would say that my daughter is almost completely recovered. Symptoms return in mild form when she is exposed to strep. She is probably more anxious than she was before the PANDAS (she is not as fearless as she was), but no one would ever guess it because she is generally a very friendly and happy girl. There are no signs whatsoever of OCD. That is, unless she has an active strep infection. But then we know to treat with antibiotics.

 

After we discovered it was PANDAS she had a round of antibiotics, which really helped. We thought that was the end of that. Then symptoms came back in full force. Second round didn't help. We were advised to put her on SSRIs, prozac, and ADHD meds. We decided to try a different route. Probably the most helpful thing of all was changing my daughter's diet. We eliminated all gluten and dairy. We did intolerance food testing (not very reliable, I know) and peanuts showed up, so we eliminated those as well. We gave her lots of fresh vegetable juices. I gave her a rice protein powder every day. I also gave her a lot of coconut oil and cooked with tumeric (I am of Indian descent). We cleaned up her diet completely so (with the exception of the protein powder) she was only eating whole foods. After about 4 weeks she seemed to calm down quite a bit, although the OCD was still evident.

 

We started her on inositol (3 g twice a day), which began working wonders after about 6 weeks. I think this was the single most important factor in her overcoming her OCD. She is still on it, and we notice that when she goes off it for more than two weeks she gets tense. She also takes B12, fish oil, probiotics, and Intrakid multivitamins.

 

She started horse riding lessons, which helped her get over her germ aversion. At the PANDAS onset, she was washing her hands hundreds of times a day until they were raw. She avoided everything that was "dirty," which meant she couldn't touch anything at all--her toys, her parents, her brother, her dog. She sat in a chair or tiptoed around the house to make sure she wasn't touching anything dirty. She had a screaming fit if anyone picked up something from the floor--they would have to wash their hands. She refused to go outside. Now she cleans stables and shovels manure!

 

She has also been under the care of an excellent homeopath, who has given her a number of remedies over the last two years, including belladonna, carcinosin, cinna, and phosphorus.

 

All of this was trial and error, and she went through many months of agony and our lives were a complete mess. (I know people on the forum know what that is like.) But we saw the symptoms gradually waning and now she is an incredibly vibrant and happy child. We had to do a lot of this all on our own because the doctors (neurologist, pediatrician, psychologist) wanted to medicate her (ADHD meds, SSRI, prozac). But we did find a few wonderfully helpful people along the way (naturopath, nutritionist, homeopath) to guide us. I don't think we're completely out of the woods, because when she gets strep the symptoms return (although only we notice them). But I am glad that we didn't have to use the medications that were recommended to us--and which we were told she would have to be on permanently. We now have a wonderful pediatrician (whose specialty is infectious diseases) who encourages the use of alternative medicine and in fact seems to think that it is the most promising way to help her to recover completely. (This is NOT to say that she thinks this is what is best for any child at any given time--she has also used IVIG and Plasmapheresis on a few of her patients, and wants to put our daughter on prophylactic antibiotics to avoid repeat infections.)

 

We were very lucky because we recognized early on that it was PANDAS we were dealing with. But it has taken more than 2 years using (mostly) natural means to finally come to a happy place.

 

I have a list of things that we tried, what we think worked, what didn't, etc. If you'd like to email me I can give you that info. My post is very long as it is...

 

I hope this is helpful. Best wishes to you and I hope things improve for your daughter.

 

Uma

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