mama2alex

Once, in desperation, I put my raging 9 yo in the car and drove him to the Japanese tea garden near our house - a place he loved and had been to repeatedly since his toddler years. It was miraculous - he calmed right down. It took some courage to take him out in public at that moment, but for us it worked on several occasions. I don't know if it was the serene environment, being in public, or just the change of location ( or the combo), but just wanted to throw it out there.

I agree with seeing an integrative MD - preferably one who's Lyme-literate. We have an excellent one in Northern CA, and he's brought my son back to us by treating him for Lyme, Bartonella, Babesia, mold, chronic viruses, yeast, and methylation issues. The psych med route doesn't seem to be helping your son recover, so maybe it's time to look in a different direction.

Thanks for posting this. My understanding is that anything certified organic cannot contain GMO's. Is that correct?

I was diagnosed with mercury poisoning 12 years ago. It was off the charts on a DMPS urine challenge. I went through about a year and a half of IV DMPS chelation, but I wasn't able to completely finish because I developed an allergy/reaction to it. I was mostly well by then though. My son was 3 at the time and the doctor gave him oral DMSA - our doc was unwilling to do IV on children. I had to have all my "silver" amalgams removed, abstain from eating any fish, and start on a bunch of supplements prior to treatment. The amalgams were removed by a dentist I found through the IAOMT website (www.iaomt.org) . Its a good resource for the dental aspect of mercury toxicity and finding a mercury-free dentist. I can't advise you on what to do except to say do your research, look into the Cutler protocol, and be 100% sure that the doctor you go with has lots of experience with this and is extremely careful. One red flag would be if they are not supplementing with good minerals before starting because the chelation will pull out the good stuff with the bad. Also, its a good idea to look into methylation because if those pathways are not working optimally, you may be wasting your time anyway. Our son only tested positive for mercury on the chelation challenges when taking all the methylation supplements. I called Andy Cutler 12 years ago and attempted to read his "book" but found it way too confusing and found him as difficult to understand as his book (I was extremely brain fogged at the time). We ultimately just did what our doctor told us, but I have been hearing good things about the Cutler protocol ever since and I think he has some youtube videos out there. Here's a couple of related websites I found recently: www.cutlersuccessstories.weebly.com www.maybeitsmercury.com

I would recommend seeing an integrative, Lyme-literate MD. They can look at all possible infections, deficiencies, allergies, toxicities, etc that may be contributing to your health problems. Ask a friend, family member or clergy member to take you if you're too sick to drive yourself. Sometimes the hardest part is asking for help when you need it.

Not trying to complicate things for you, but if you haven't yet given your younger one abx, you could do the Advanced Labs Lyme culture test. Even Igenex can return false negatives, as it did repeatedly in our case. With the culture, you know if there are spirochetes in the blood - you're not relying on an immune response. Then if that comes up positive, you can do the Igenex testing for co-infections. Just a thought...

This article in the Sacramento Observer reports Congressman Posey's revelation to congress that Dr William Thompson of the CDC has revealed the deliberate omission of data in a 2004 study of the link between MMR and autism. The other authors not only omitted damning data and conclusions from the final publication but destroyed documents in order to cover it up. Sadly the Sac Observer is just one of two publications in the entire country that has reported on this so far. http://sacobserver.com/2015/07/u-s-congressmans-statement-questions-science-cited-to-support-school-vaccine-bill/

Please make sure she's taking high quality probiotics while on antibiotics (about 3 hours apart). Also, PANDAS/PANS indicates a malfunctioning immune system, so it's very important to work on healing the immune system as well as treating any and all infections. An integrative or DAN doctor is your best bet for that.

If he already qualifies for IVIG, why do they need to see the response to the vaccine? I would be very cautious about giving vaccines right now, especially if it contains Thimerisol (mercury preservative). When you're already ill, vaccines are risky. My son has had pneumonia 5 times in his life, after being fully vaxed with Prevnar. The vaccine didn't make a bit of difference. He stopped getting pneumonia only after we started treating for Lyme and supporting his immune system. All that said, I will say that we did give our son the Pneumovax in order to get IVIG when he was 9. We were also worried about H1N1. He came through the vaccine alright, but we took a risk.

I'm so sorry. I've been where you are - pretty much everyone here has. Early on, once I finally got my raging, obsessed, terrified 9yo to bed, I'd go out for a drive and cry my eyes out almost every single night. It's horrifying and terrifying to watch your child go through this - and it's so lonely. Reach out to people on this board through PM. Arrange phone conversations and try to meet someone from your area in person. You can read and research all day, and that's essential. But connecting with other parents is crucial to your well-being. I noticed in your first post you said he'd been tested for Lyme due to exposure to ticks, and it was negative. Can you share what test was done? Was he tested for coinfections such as Bartonella, Babesia, Erlichia, Anaplasmosis, or Mycoplasma? I agree with others who've suggested looking for Lyme AND coinfections, but it's also important to get the right tests from the right lab, and have the child and test results evaluated by the right doctor. You can get lots of advice on the specifics of all this on this forum. Hang in there. You WILL get him well!

Glad to hear he's doing ok MomWithOCDSon. This is such a difficult decision to make. A great book for learning more about vaccines and making an informed decision is "What Your Doctor May NOT Tell You About Children's Vaccinations" by Dr. Stephanie Cave. It is a fair and balanced look at the vaccines, the diseases, the history, public health policy, etc - it is not anti-vaccine.

My first inclination is to say keep trying antibiotics, because these infections CAN be invisible and false negatives are common on the tests. But you sound like you are leaning toward stopping antibiotics and this could actually be informative. If you start to feel worse off abx, you know you've still got bacterial infections going on. Also, while you're off abx you could do the Lyme culture test from Advanced Labs, which is more definitive than immune-based testing. Other considerations when you are not improving with abx alone are chronic viruses, methylation, food allergies and mold toxicity. Have you explored any of those? In any case, don't give up and you will find your way.

Forgot to mention, we've seen great results with Burbur from Nutramedix. You can order it online. We also use Takasimi supreme, which is a powder you mix with water. Our doctor highly recommends this one.

Another article - from July 10th - with a little more info: http://www.medscape.com/viewarticle/847772 "According to a search warrant issued on June 16 by the US District Court for Northern Georgia, the two agencies went to Dr Bradstreet's office to shut down the illegal use of globulin component macrophage-activating factor (GcMAF)."

Skin brushing - if she'll tolerate it - helps get/keep the lymphatic system moving toxins out of the body. You can buy a brush at Whole Foods or other "natrural" store and google how to do it. It's quick and easy.

My son had his first bout with asthma a few weeks after his DTaP booster at age 6, so we won't do this one anymore. I can't prove a connection, but have always been suspicious. Also, we later discovered that he doesn't make any antibodies whatsoever in response to this vaccine (so what's the point?). I had many "discussions" with his ped about this vaccine and argued that 1) he doesn't respond to the Pertussis portion, 2) he can get a Tetanus booster when he actually needs one (as opposed to doing it every time he's supposed to get a Pertussis booster, and 3) Diptheria? there hasn't been one case of diphtheria in the U.S. in a number of years. As for Gardisil, there have been many reports of terrible reactions, long-term autoimmune illnesses and death from this vaccine - almost 30,000 reports as of the end of 2013 according to the National Vaccine Information Center, including 140 deaths. http://www.nvic.org/Vaccines-and-Diseases/HPV.aspx http://truthaboutgardasil.org/

The doctor may have thought it wasn't a possibility because your daughter's strep test was negative, but this isn't necessarily the case. Other things can trigger PANDAS/PANS. In our case the trigger was an obvious case of pneumonia, but the underlying causes were Lyme and coinfections, viruses and other immune system issues. For us, working with an integrative MD who knows how to address all the infections, immune problems, and vitamin/mineral deficiencies was the answer. The symptoms you describe are classic for PANDAS/PANS and the knee pain makes me wonder if Lyme could be part of the puzzle.

Absolutely! And, I'm sorry to say, there can be more than that. My son has tested positive for (or been clinically diagnosed with) Lyme, Bartonella, Babesia, HHV6, Epstein Barr, heavy metals, and mold toxicity. He also had pneumonia 5 times, but we never knew if it was mycoplasma. Jan251 explained it perfectly - it's the immune system. The mercury can come from several sources: fish, amalgams, some vaccines, and little ones can pick it up in utero/breastfeeding from a mom who's been exposed to one or more of these sources. If your daughter has elevated mercury, you need to chelate, but it's extremely important to have it done by an experienced, knowledgeable doctor who also understands methylation and treats Lyme, etc. DAN! doctors are well-versed in chelation and some - like ours - are also Lyme-literate. Chelation needs to be done slowly, carefully, and in the correct order with other treatments for methylation deficiencies, Lyme, coinfections, viruses, etc.

We went to Rothman two summers ago, and I have no regrets. The doctor was amazing and we were so glad we went. That said, we'd been dealing with school refusal for 4 years at that point. My son's other PANS symptoms had receded dramatically with Lyme, etc treatment, but the school refusal was not improving at all. We saw that it was now a "habit" so we went for the intensive therapy and it was miraculous for us. I agree with others that you need to follow your gut. If you don't go this summer, it will be there if/when you feel you need it.

I agree you should check for tick-born infections. Our son has had mild chorea movements at times and he has Lyme, Bartonella and Babesia. A child does not necessarily have one infection or another - the immune system is the problem so it's common to have a number of infections going on, including bacterial, viral, fungal and parasitic. Please find a Lyme-literate doctor. They are well versed in PANDAS/PANS now, and can test for all infections that might be impacting her. Also, the fact that you have chronic health issues, and that she had immune system problems from birth (chronic ear infections) indicates the possibility that you have undiagnosed Lyme and passed it to her in utero. This turned out to be the case for us, and my son didn't have the severe onset of psychiatric symptoms until age 9.

SB277 just passed the CA Senate and now goes to Governor Brown's desk. If you live in CA and don't want the government forcing you to vaccinate your child (and your grandchildren!) with whatever they say, whenever they demand it, PLEASE write and call Gov. Brown! This bill will not allow any child missing even one vaccine to attend public or private school, and it will not allow homeschoolers and Independent Study kids into a classroom of any sort, even if its through your homeschool program. Governor Jerry Brown c/o State Capitol, Suite 1173 Sacramento, CA 95814 Ph: 916-445-2841 Fax: 916-558-3160

Incredibly sad. Thanks for posting sf_mom. I hope this is fully investigated - it does seem very fishy.

SB277 passed the CA Assembly yesterday by a 46-30 vote, but it is NOT YET A LAW. Eight Democrats changed their position from Yes to No as a result of INTENSE efforts by California citizens. The bill now has to go back to the Senate to be voted on again (due to amendments). If it passes the Senate (which it likely will), it will go to Governor Brown. There's a huge letter/fax/postcard writing campaign happening NOW to convince Gov. Brown to veto. If you are in CA and haven't joined the fight yet, please go to "Our Kids Our Choice - Oppose SB277" on Facebook and help with this effort (you have to join - it's a private group). It's not over yet!

Some of the symptoms you describe are common to Lyme Disease and Bartonella, a co-infection of Lyme - especially the sore knees, lethargy and rages. Many kids with PANDAS/PANS have turned out to have Lyme and co-infections as well as other infections. These things rarely travel alone. I would encourage you to see a Lyme-literate MD. If you post your location, someone here can most likely refer you to a good one. Lyme doctors are now seeing a lot of PANDAS/PANS kids and are experienced at looking for ALL the infections and other issues that can contribute to this. They will address the staph, but also look deeper. I can totally relate to how you're feeling. When my son was at his worst, I told my husband many times that I felt like I was standing in the middle of a crowded room screaming for help, but everyone just kept acting like they didn't hear me. But the people on this forum heard me and helped. We hear you too. Hang in there!

For us some of the contributors have been Lyme and co-infections, including Bartonella and Babesia, mold, heavy metals, methylation, and vitamin/mineral/anti-oxidant deficiencies. Your best bet to learn about methylation is to look at any threads where LLM has posted on this topic. She's the resident guru. (-: