bws
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DS5's stool sample reveals strep in the gut (4). I heard this can be treated with essential oils but haven't been able to locate any definitive information. Does anyone have experience with this? Thanks!!
I do not have personal experience, but did hear of success with the Raindrop Therapy involving essential oils.
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[quote name='dcmom' timestamp='1337182125' post='139771' she is on Azith. (so the of her getting perstusis is non-existent IMHO) makes me all the more certain it is right to not vaccinate.
So why are we vaccinating against pertussis anyway, if it is treatable with abx?????!!
I wonder which vaccines are really "life saving for fatal diseases".
My very pro pediatrician recently admitted to me that Polio was to be taken out of the vaccine schedule prior to 9/11 and they kept it on only due to the threat of bioterrorism....
Pertussis is highly contagious and can be fatal to babies...so it is really more of a "herd health" thing. If all the non-PANDAS kids in the class are vaccinated (assuming the vaccine works!) then the unvaccinated PANDAS child is unlikely to be exposed in the first place.
And yes, it is treatable with antibiotics. I think the schools/health officials want to prevent big outbreaks.
So I am vaccinating my child, to prevent other kids from getting sick?
This doesn't sit well with me....especially when I think that Pandas is probably a vaccine induced problem.
Yes, pertussis is fatal in very young babies, probably before their first vaccination. I have had several people I know whose child had pertussis and the child was then dutifully vaccinated when the time came. Beats me
Well yes, you are vaccinating to prevent others from becoming sick. But the flip side of the coin is, others are getting vaccinated to prevent YOUR CHILD from getting sick. Well, and you are also getting vaccinated to prevent (hopefully) yourself from getting sick.
I agree, it sounds like the pertusis vaccine isn't 100% effective anyway. I don't know if it's one of those vaccines that if vaccinated, and you do get sick, you get a milder course of the disease?
Re the babies, well, I think the theory is that if every AROUND the babies are vaccinated, they are less likely to be exposed in the first place. But, we're not around any babies, so I'm not really worried about dd killing off babies with her pertusis germs (not to mention that dd is on Azith!).
But I do have my qualms about many of the vaccines. My non-pandas dd got shingles (she had 1 chicken pox vax). My friend's kids got "chicken pox" years after being vaccinated. My friend said, it was funny, they didn't get it from each other (had it months apart) and it was only on 1 side of their body. I said, "Oh, they got Shingles."
Is it better to do the chicken pox vax, and then get shingles at a young age (does this mean you won't get it as an adult?). Don't know.
I am totally confused about vaccines in general at this point. Interesting that this came up here, while at the same time someone in our community is running a hotline with lectures about vaccines by doctors, and help with exemptions etc.
I do not vaccinate myself!! I would not do it in any way. I don't think my child should be exposed to the vaccine toxins and risks with her fragile immune system, TO BENEFIT OTHERS. I am not afraid of chicken pox, 2 of my kids had it (its really nothing and grants you lifelong immunity vs the vax which doesn't) Right now, I am a point where I feel that the ONLY vaccines I would give is Rubella for a girl prior to marriage, and Mumps for a boy before maturity. Thats it.
Many of the diseases with which the medical community are scaring us, really are not that bad and the risks of death are small eg measles, pertussis. Uncomfortable yes, but a vaccine injury is lifelong, and the disease is not.
Great book for futher references "Saying no to Vaccines" by Dr. Sherry Tenpenny.
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Has anybody heard of Raindrop Therapy? I've heard of success with it. It entails massaging essentials oils on the child every day.
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[quote name='dcmom' timestamp='1337182125' post='139771' she is on Azith. (so the of her getting perstusis is non-existent IMHO) makes me all the more certain it is right to not vaccinate.
So why are we vaccinating against pertussis anyway, if it is treatable with abx?????!!
I wonder which vaccines are really "life saving for fatal diseases".
My very pro pediatrician recently admitted to me that Polio was to be taken out of the vaccine schedule prior to 9/11 and they kept it on only due to the threat of bioterrorism....
Pertussis is highly contagious and can be fatal to babies...so it is really more of a "herd health" thing. If all the non-PANDAS kids in the class are vaccinated (assuming the vaccine works!) then the unvaccinated PANDAS child is unlikely to be exposed in the first place.
And yes, it is treatable with antibiotics. I think the schools/health officials want to prevent big outbreaks.
So I am vaccinating my child, to prevent other kids from getting sick?
This doesn't sit well with me....especially when I think that Pandas is probably a vaccine induced problem.
Yes, pertussis is fatal in very young babies, probably before their first vaccination. I have had several people I know whose child had pertussis and the child was then dutifully vaccinated when the time came. Beats me
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[quote name='dcmom' timestamp='1337182125' post='139771' she is on Azith. (so the of her getting perstusis is non-existent IMHO) makes me all the more certain it is right to not vaccinate.
So why are we vaccinating against pertussis anyway, if it is treatable with abx?????!!
I wonder which vaccines are really "life saving for fatal diseases".
My very pro pediatrician recently admitted to me that Polio was to be taken out of the vaccine schedule prior to 9/11 and they kept it on only due to the threat of bioterrorism....
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OK,
How do I find a good homeopathic practioner? I live in NYC.
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DS7 has been taking a prophalactic dose (250mgx2 1 day per week) of azithromycin since December. It has made a world of difference for his tics and other related behaviors. Unfortunately the medication that I ordered through Medco has just arrived and it is the Greenstone brand. From what I have read on this forum Greenstone is not as effective as Sandoz or Teva brands. Has anyone had any luck with Greenstone, or do I need to run to the pharmacy tomorrow?
This is from Dr. Schulman:
She has had several patients who have significantly backslid due to Greenstone brand. It took a while for her to figure this out. She writes onto the RX Teva and Sandoz only. Yes, I would recommend to change.
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Can anyone share what particular remedies helped?
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i gave too much Tylenol to DS when he was a toddler. I remember gving him ibuprofren once and he became exremely hyper. Must have been the dye. We havent used tylenol since I was told 5 years ago that it strips glutathione.
I was wondering does anybody know how to get glutathione levels up?
I've heard of vitamin C, anything else?
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ta da
Just heard about this yesterday!
NAC clears mercury from the body, crosses the BBB and helps autistic kids in the process. Cool.
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can anybody post phone numbers or other contact for Dr. K and/or B?
thank you
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I have had such a spot on my neck ever since my first pregnancy fifteen years ago. The ONLY time it disappeared was when I was taking a supplement for my liver (called Liver Balance from www.pbiv.com). These are fairly benign liver spots, although not pretty. Incidentally my Pandas DD is taking this liver balance now, and it is doing wonders for her.
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Hey all,
Update on my son Nicholas. I am awaiting a call from Dr. T on his bloodwork but it appears to be a mycoplasma issue. Nick is on day 14 or so of Azithromycin. Over the past 2 days he has been feeling naucious in the am after his dose. My son has had remarkable changes on the medicine. He is happy, not angry. Sleeps the night, goes to bed on time, more cooperative, handwriting is changing for the better, attitude in general is wonderful, only tic present is a stomach tic which actual wasn't one that was very common for him.
Any thoughts on if I should take him off the morning dose or just let him battle through it. Doc wants him on Antibiotic for 30 days before we do pulse therapy. We see his holistic/medical dr. on Thursday which may help even more...
thanks
abbe
Isn't azythromycin a once a day medicine?
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I know a local company does make a 50 billion capsule.
They are called Maxi Health. http://www.maxihealth.com/products/maxi-active-pro-50.html?pcid=7
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Thanks for all the links - I have some reading ahead of me. I'm a little familiar with BH4 from Yasko's videos - great find on the autismOne link - looks like this is the same presentation on Yasko's DVD, in which case I highly recommend it to everyone reading this thread. Not everything Yasko says is validated/peer reviewed through research but she has some tantalizing theories and I think some have been good things for my kids.
I assume from the Shaw paper that aluminum is also in allergy shots, since the goal is to provoke an immune response. I also assume something nasty is in the serums as a preservative - if not themirosal, then an equally suspect additive. It was only after my DD had rec'd 18 months of shots that I became aware of what I might be putting into her body and we stopped the shots this winter. There has got to be a better way to control histamine than injecting her with an adjuvant that has "pervasive uncertainty" around it's safety.
Does anyone know what adjuvant or preservative is used in allergy shots? Not that I can do anything about it now, but curious.
I've considered TMG/betaine for her digestive issues but haven't pursued. Anyone have experiences to share?
I don't have experience, but Dr. Doris Rapp is doing allergy extract shots. It is supposed to work well. Check into Practical Allergy Research Foundation.
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I believe NAC is another good one for aluminum.
By the way, the U.S. government is also purposely flying airplanes around dropping aluminum from the sky, putting it in the air you breathe and of course the soil and water. No official comment, but it seems some speculate it is an attempt to deflect some of the radiation and thereby slow down global warming. There are other speculations, too, of course.
WHAT?!!
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Well, about to start dd12 on 30 days 1/2 tsp daily on diflucan. Would you pause abx for the duration? Should I start activated charcoal or bentonite clay simultaneously? I know many of your kids experienced die off uptick in behaviors...would you keep her home from school, start Friday night so we can get a weekend under our belt? Thanks for your help!
I am unsure about Diflucan..... Would you try garlic and acidophilus instead??
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OK so my brain is working overtime, and everything I have recently learnt is coming together in one solid puzzle. Please comment on this.
There is no doubt that many of our children have extremely high strep levels and high strep antibodies. Obviously their bodies have a hard time getting rid of them despite the abx we are giving them.
I have studied the vaccine controversy in depth, and the one thing that keeps on jumping out to me, is using aluminum as an adjuvent. Aluminum are virtually in all vaccines, and they bind to the antigen, keeping them in the body, so that the body produces antibodies, and keep them there for a long long time. Aluminum does not leave the body on it own. It is also found in American Cheese, aluminum pans, deodorant, just to mention a few. My hypothesis is that perhaps the aluminum our children somehow were exposed to bound to the strep antigen and is just sticking around in their bodies?
And when the body has a chronic infection, is causes the brains immune system to turn on (microglial activation) and cause brain inflammation which causes all the other problems we see in our children.
Aluminum toxicity causes tics and immune dysfunction http://proliberty.com/observer/20080109.htm
Does anyone know of a serious way to get rid of this? I am looking into the mud baths now www.magneticclay.com
OK I will get off the soapbox now. Am I talking nonsense?????
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I am glad you brought up the topic of vision oddities. I wish I could be of help. I find myself wracking my brain for explanations for some of the symptoms associated with this condition and often don't have an answer. Most of these symptoms occur for a real physiological reason. The brain and it's nervous system is amazing and amazingly complex!
I, too, have observed an unusual eye phenomenon with my son that concerns me. Numerous times throughout the day, his eyes uncontrollably rotate upward for several seconds to such an extreme position that you can not see his iris. One can only see the whites of his eye. It seems painful and he quickly closes his eyelids until it passes in a few seconds. He is conscious during this time. It seems to be some sort of dystonic eye movement problem. He is not able to discuss what he is feeling because his expressive language is limited due to autism. I haven't been able to catch it on video because it happens so fast and unpredictably. Of course, predictably, it didn't happen during his neurology visit! Has anyone seen this particular eye symptom with their child?
Yes! My ds did this just prior to getting strep. He does not officially have Pandas, his sister does, but I have seen strange behaviors in him too. He claims that his eyes are dry and this is a way to wet them.
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Has anyone seen any success or improvement with detoxifications like mud baths, saunas, edible clay etc?
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Here is a a large list of PANDAS docs in NY. I have to get all of my referrals updated - they are about a year old. However, it is relatively extensive, so I hope that someone can assist you or refer to a doc in state who can:
Dr. David S. Breindel, MD234 Elk Avenue
New Rochelle, NY 10804
(914) 235-5520
Elmwood Pediatric Group
919 Westfall Road
Building A, Suite 105
Rochester, NY 14618
(585) 244-9720
www.elmwoodpediatrics.com
Laurence R. Saul, M.D.
7 E 68th St Ste B
New York, NY 10065
(212) 327-0753
Karen Levine
77 Mercer Street
NYC
(212) 219-9985
Dr. Max April
1305 York Ave
New York Otolaryngology Associates
Floor 5
NY, NY 10021
173 Froehlich Farm Blvd
New York Otolaryngology Associates
Woodbury, NY 11797
Eric Hollander, MD
Director of the Compulsive, Impulsive, and Anxiety Disorders Program
Mount Sinai Medical Center
300 Central Park W
Suite 1 C
New York, NY 10024
ericholl@optonline.net
212-873-4051
Academic Affiliation:
Montefiore Medical Center University Hospital
Albert Einstein College of Medicine
Dr. Keri Chernuchin
485 Underhill Blvd.
Syosset NY
(516) 921-0183
Stefanie Weinraub Weiss (consulting under the doctor’s direction)
Slweiss25@gmail.com
(516) 641-7926
Amy Kelly, RN, CFNP (very good diagnostician)
Hudson Valley Primary Care
1323 Route 9, Suite 204
Wappingers Falls, NY 12590
T: (845) 298-7022
F: (845) 298-5618
Laurie Moran-Marsh, NP-P (Board Certified)
Northern Psychiatric Services, P.C.
11 Marshall Rd., Suite 2L
Wappingers Falls, NY 12590
T: (845) 298-4350
F: (845) 298-4354
Dr. Arthur Buonagpina
2627 Hylan Boulevard
Staten Island, NY 10306
(718) 351-7617
Alan Jacobs MD (treats young adults)
120 East 56th Street
Suite 1040
New York, NY 10022
and
359 East Main Street
Suite 3B
Mount Kisco, NY 10549
http://www.neuroendocrinology.org/
Dr. David Halpert (Pediatric Neurologist)
3318 South Main Street
Horseheads, NY 14845-3405
(607) 739-4289
Dr. Gregory Malanoski (Infectious Disease)
602 Ivy Street
Elmira,
NY 14905-1646
(607) 737-4577
Michael Compain, M.D.
Kenneth Bock, M.D.
Rhinebeck Health Center
108 Montgomery Street
Rhinebeck, NY 12572-1106
Fred Pescatore, MD, MPH, CCN
369 Lexington Avenue - 19th Floor
New York, New York 10017
212-779-2944
www.drpescatore.com
Dr. Kenneth Bock
108 Montgomery Street
Rhinebeck, NY 12572
(845) 876-7082
F (845) 876-4615
www.rhinebeckhealth.com
Dr. Stanley Weindorf
Woodbury Pediatrics
202 Terminal Drive
Plainview, NY
(516) 576-0202
Thanks for this list!
Anybody have personal experiences with any of these? Do they accept insurances?
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I just came across this.
http://www.russellblaylockmd.com/
Click on Microglial activation. Perhaps Pandas related?
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I have read up on yeast extensively.
I do not have the full list of symptoms with me now, but it is long.
The idea of yeast is that the good flora and the yeast coexist in the gut. Overabundance of yeast can happen when the probiotics are killed due to antibiotic. You need the KILL THE YEAST and TAKE A GOOD PROBIOTIC. Basically, a comparison would be to kill the weeds, and reseed the lawn.
Good yeast killers are:
Garlic
Green leafy vegetables like broccoli and kale
Caprylic Acid (sp?)
And a good Probiotic like Culturelle will replace the good flora.
There will be a die off reaction of the dying yeast releasing toxins for several days following the start of the treatment, but stay with the program. After about a week, the child should feel better.
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I "calmly" tried to bring her up to speed with dd, gave her a lot of data, etc., in the hopes that she might be remotely interested in her or pandas. Not so. As I was explaining ivig to her she actually grabbed my dd's arm to look for puncture holes and warned of the dangers of ivig...AND the DANGER (shuddering now!!) of carrying a backpack over ONE shoulder!!! Ladies, add that to the top of your list of concerns. She also asked, "is she drinking her milk?!" . All the while frothing at the mouth over pumping (more like pimping) vaccines, vaccines, vaccines.
My pediatrician actually told me "There is nothing good in milk....." And he knows. He worked in a dairy through med school. He is a very prestigious doctor.
Detox for Liver and Kidneys
in PANS / PANDAS (Lyme included)
Posted
We use Liver Balance and Kidney Rescue from the company Pure Body Institute of Ventura. I think these are great products!