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Just a thought from the peanut gallery - I wonder if 'we' are altering our own genes and DNA from chronic infections, vaccinations with toxic preservatives and animal and embryonic cells, and geniticaly modified food- which came first, the chicken or the egg. (Carry on)

This may not work for you, and it only sometimes works for me- sometimes. If I can get my dd to sit next to me, I will hug her very, very tight, and shower her with love- kissing the top of her head over and over again, calm, soothing sometimes baby talk voice with compliments, saying 'it's okay' over and over and over again. This can be while she is cursing, and fighting me with all her might. When it's successful, the wind leaves her. You were extremely honest in your posting, I will be too. Rage, violence and abuse in my house from my dd has just about undone me. I have near emotional nervous breakdowns on this issue. I can put up with anything else, but this. I have a younger neurotypical child that I cannot or will not allowed to be abused. We did go to risperadone. And, it worked for about 4-5 months. I then tried to take her off, and we came back quickly to unmanageable living. We have treated this child's health issues, and pans and Lyme, for a long time. I was scared to do both risperadone and infection (antibiotic) treatment at the same time- worried about system/liver overload, so we paused all antibiotic and herb treatments while exploring psy. medications- Again, it worked for awhile. And, we needed that. We were at red alert, like you are. It is your duty to protect your other children- and, in my dd's case, removing her to another room caused her to self harm- when she is in the rage- I am now very close to going back to antibiotic treatment, while trying to maintain a lower dose of risperadone - we are in a very difficult home life situation again. Hang in there- sending you good thoughts-

I spoke to a VIP from an ERMI company awhile back (mold testing people) and he recommended one with a Hepa filter (no ozone) I got 2 Hepa air purifiers, one for master bedroom and family room (Winix) they are quiet- for my daughter's bedroom, I got a Hepa air purifier (different brand) that also has a UV light in it- which claims to zap germs- 2 people that live here have seasonal allergies, and they claim that after I installed the air purifiers, their allergy season was better- I am also a stickler for changing the heating/air conditioner filter often. Have a Hepa vacuum cleaner. We have no pets.

LLM, you could sign the religion waiver, and do what you want- no need to follow up and tell them you got DS a tetanus booster if you decide to do it. Now that CA has removed personal exemption waiver, and replaced it with religion waiver, it has got me thinking. Can a school staff person really quiz you on your religion? What is the definition of a religion, but a set a personally held convictions and beliefs? I am envisioning a conversation like this: 'Mrs. X, I see you have signed a religious exemption form. Could you state the name of that religion?' 'PANS. It's called PANS.' 'I'm sorry, excuse me?' 'PANS. Like pots and pans. PANS. It is a higher power that has ruled my life, and in fact, I've tithed my entire savings account over to it.' (sorry, kind of losing it)

**One of my biggest frustrations is the inability to even TRY- you cannot tell me that with the billions in pharmaceutical profit coupled with today's technology, we cannot 'GREEN' these vaccines -and other countries are revising the vaccination schedule, we will not even have a conversation about it- Medicare patients will be dropped unless they follow a set schedule, no matter what- private Pediatric practices will drop care at their desire if not following their mandated vaccine schedule- no exceptions. Multiple, 5-7 diseases given to an infant every 3 months at the same time, is insane. Why cannot they acknowledge our fears, and work with us? Because to open the dialogue a crack would cause a cascade? The cascade is already here. Let's not talk about the Hep B vaccine, a sexually transmitted disease vaccine which in 2005 contained mercury, more mercury in that shot than the EPA deems safe, given to my daughter on her 1st day of life! Without my consent or knowledge! Whew. Yes, the Gardisil law is in place in CA. It can happen. Without consent. I have not heard of it happening yet- I suspect the fear of an outpouring of rage and publicity is keeping it from happening- yet? The recent experience with my DS 15- who I signed a personal exemption form with his middle school 2 years ago when he was 13, after I received a threatening letter stating they would kick him out of middle school on a certain date if I did not show an updated dTap booster (and no where on the flyer, even in tiny print, did it disclose CA right to personal exemption) entered high school this year, made the golf team, had to get a sports physical showing updated booster- I talked to my son- and I would have allowed it if forced to choose - he is healthy and neuro-typical, and he agreed/wanted it if necessary- but the walk in clinic who did the sports physical never said a word- he did not receive the shot, and is playing golf. Look- of course, I do not want a resurge of a few possible diseases that potentially might be fatal. But going from 10 shots in the 1980's for children under 5 years of age, to 36+ shots in 2013 for children under 5 years of age- we were okay in the 80's... Ironically, all 3 of my children are vaccinated, save for a few boosters. But after I got educated a few years ago, dealing with my dd's immune system failures, fearing they may possible lurk in my other 2, I cannot bring myself to allow more. I am overwhelmed with the responsibility. I have said when they are 18, and want to update a few boosters, it is their decision - of course, allowing my PANS/ Aspergers child will be capable of making those kinds of medical decisions for herself at that time.

CA pulled the ability for personal exemptions, and at the last minute allowed religious exemptions. While the pharmaceutical companies and powers that be are protected from vaccine injury lawsuits, the information presented here that insurance companies may get the ability to not treat/ pay for any malady deemed preventable by a vaccine, and the vaccine was opted out, gave me pause to wonder if this situation might be the catalyst that breaks open this issue- creating possible serious legal ramifications (religious rights and freedoms) The issue of the 'greater good'. And, surely, CA's new law that young girls (under 18) can be given the Gardisil vaccine WITHOUT their parents consent or having to be present, has to blow up somewhere, sometime in the courts (please God) It is an issue that provokes deep feelings in me. And I don't have a vaccine injured regression link to my PANS/Aspergers child, almost 8 years old, who has been fully vaccinated. But the CDC reported statistics of 1 in every 88 children/ 1 in 52 boys now having autism, statistics that are taken from public school records only, not including ADD/ADHD, is a environmental epidemic that is altering the human race. And no, my opinion is not concrete or convinced it is solely linked to vaccinations. But a genetic epidemic is scientifically impossible. Very valid points about the parents sitting on the fence, or like I was, naive about the overdosing schedule. As an Age of Autism reader, I myself was unsure about both of my healthy, neurotypical children getting updated boosters this year- the Pediatricians can be very persuading, (emphatically using the word DEATH at me), and my 15 year old may have been prevented from playing high school golf, his dream. Or the Grad students from pursuing their dreams. This post triggered me- sorry for the long output- but I long to see some sort of healing and movement forward in my lifetime on these issues.

So, if it is against my religion to inject my child with formaldehyde, aluminum, mercury, animal DNA and embryonic tissues, yet the child catches, say, the measles, needs hospitalization and the insurance company refuses to pay? Sounds like a major lawsuit. Maybe it will then go to the Supreme Court.

Kara- awesome, wonderful news :-) !

Hi- I wanted to reply since I'm also an adult that recently went off all Lyme treatment. Honestly, I don't necessarily agree that unless everyone is treated in the house, no-one will get well- I have 2 healthy and neuro typical children who don't need treatment of any kind- maybe that was meant for all infected people? I do believe pets can absolutely re-infect - we have no pets, but feral cats got me into this mess in the first place, I'm sure of it. Not anxious for furry friends ever again. Anyway, I treated very aggressively for 18 months- mold, parasites, yeast, Lyme, Bartonella- multiple antibiotics and herbs, massive supplements. I think 6 months of Bicillin shots with Tindamax every 2 weeks on and off cleared significant neuro issues, short term memory is better. I'm the one who carried Lyme for years with no clue, thinking it was just how life rolled with me, never seeking help. I've been off everything except some supporting supps for around 6 weeks- haven't seen my LLMD in 3 months. Is everything perfect? No. But not sure perfect is even attainable- I've grown and feel more confident- and feel confident I knocked deep infections down. I think it's individual, of course, but Advil here and there takes care of any pains for me. I'd say my biggest complaint is fatigue- but I'm able to run my busy family, and may explore looking at thyroid again or hormones through my regular Dr. I need to rest at times during the day, which is frustrating to my type A personality, but part of that acceptance deal. At this point, I am certainly waiting and watchful, but also moving into acceptance of where I'm at- I think there is also an emotional component to healing- this journey with Lyme disease with my daughter and I, and PANS- has been filled with strife and stress- she and I are moving into doing therapy together, too- Financially this has made a large impact as well- so utilizing what our insurance offers is part of our new direction.

**JMO, of course I am not a Dr. (but have played one in real life, ha ha) So, the test is showing high clostrida (this will give aggressive, difficult behavior) and, high fungi/yeast (which is canidia, by the way) Yep, her gut is way out of whack :-( I know you have always had trouble giving her probiotics- but, IMO, in order to fix this, you must, because if you use vanco. and Amp. B, it will kill off this bad stuff, but you need to replenish with good bacteria (probiotics) so the bad stuff (clostrida, yeast) cannot grow back. Custom Probiotics are some good ones, high count probiotic. I in no way can tell or recommend to take her off the antibiotics. How is her diet? Watch the sugar and carbs. Hang in there--

If the test was from Great Plains Labratory, you can call and get a consult on the test. Also, if from GP Lab, their website offers some explanation. If it's from metamatrix, their website also has explanation. We have run these tests, and the yeast/fungal portion is not pertaining to mold found in a home or school/buildings- it is typically referring to arabinose, and if high, it is suggesting treat with anti-fungals and regain balance in the gut/body. This type of yeast overgrowth comes from too little probiotics, too much sugar/carbs in the diet, antibiotics wiping out the good flora in the gut and allowing yeast overgrowth, leaky gut. And oh yes, can cause behavioral issues in many kids. The test also looks at clostrida overgrowth if present, klebsiella bacteria.

Hi Ifran, Yes, we did in the beginning when she was with a top DAN! Dr. She is double A1298C. DAN! at the time thought because of this mutation, not an issue. I have given her a YASKO RNA supplement for A1298C, and worked on detoxing ammonia for her- no difference.

I decided to reply, as my dd has been on risperadone/risperadal. We are the backwards story here, having first treated bio-medically, then PANS, then Lyme all for years, then after all that, getting a dx for autism and trying some of these drugs recently. From your post, and your history, it sounds to me like too much is going on at one time- is your child still on antibiotics? IMO, risperadone or any SSRI'S should be introduced slowly, and 1 at a time spaced weeks apart, with you taking copious notes for any type of reaction. If you overlap them so close to one another, you cannot tell what is what. And, if you are treating Lyme or infections at the same time, having die off, it can be a mess, and very hard on the liver. Every child is different, and some of us bring in co-morbid issues. For us, risperadone did work at stopping some violent rages (it is also used to treat autism, not just bi-polar) We did try and add an SSRI'S, Zoloft, for the very first time this last month. It was a No Go- as soon as this med started kicking in, day 10-11, it increased my dd's OCD to levels I hadn't seen in 2 years, including her fears from that time about dogs coming through her bedroom window, etc. I pulled it 100% immediately, and will never try an SSRI for her again. As soon as that drug left her system, these fears are gone again. But because we had no other new factor's at the time of this trial, it was plain to see it was this drug. Lastly, depending on which Dr. you are seeing, that particular Dr. is going to give you their information based on their expertise. Best wishes-----

Since your looking for any advice, okay I'll throw in what came to my mind. The MRI was done when she was 5, now she is 13, and she has been on tons of antibiotics in that time- the sinus infection from that time very well may have cleared. You say her sinus issues come out only when on antibiotics - my vote is yeast, since you have a terrible time getting probiotics in her- while on heavy antibiotics. You are saying her IgG subclasses are low- makes me think IVIG is needed- if they are still low, it should be covered by insurance. I believe this is a treatment you've never done before, might be exactly what she needs, given her bodies extremely difficult time of getting rid of infections. You are in New Jersey- I think you've seen Scott Smith/Neubrander- I know they have their own infusion site there- did they not recommend IVIG, especially given her subclasses are low? And lastly, this will not be popular, but given her tremendous suffering, perhaps issues beyond PANS (like I've come to find my daughter has- we have been dx'd with autism recently) maybe you could find a MD psychologists who is educated on meds that may further help her in the meanwhile.

A pediatric neurologist told me last week I should see this movie- Robert De Niro plays a father to a grown child with bi-polar, and IRL, it appears he has a 14 yr. old son with autism.

Well, everyone here has summed it up beautifully, nothing I can add, except personally I have anxiety attacks (not frequently) and they are physical to me- trying to calm breathing, heavy chest, trying to clear my head- Also, LLM, when you write up your beautiful piece here about empathy and understanding OCD, PANS, et al Could you please CC me a copy? I need to tape it on my refrigerator door to refer back to in dealing with my daughter, thanks ;-)

My dd has double A1298C- it is hard to figure out what to do with it- our former very smart DAN! Dr. who originally tested for it, sort of shrugged it off. 1 thing about it, it may cause excess ammonia, which can be combated with Yucca root, or Nutrimedix Sparga tincture. I believe Great Plains Oat test (urine) now tests for excess ammonia. I have used some of Yasko's specific supps for A1298C, really saw no difference. I do know that if I try and supplement B-12 separately for her, very negative reaction.

Also, rifampin can decrease the effectiveness of other medication you may be on, say thyroid meds, hormone meds, etc.

My dd had 2 HD-IVIG's, and we had not tested for Lyme and it's co-infections beforehand. Neither PANDAS Dr. we worked with mentioned it, and frankly, Lyme sounded crazy to me. No history or memory of tick bites, ever, for either one of us, and my dd has lived a rather sheltered life, no camping, never owned a pet, live in the suburbs. Surprise! FWIW, the 1st IVIG was in retrospect a massive die off/ herx, whatever you want to call it, and the 2nd IVIG, which was about 7-8 weeks later, was magic. Until it wore off. So, I don't think you'll really know until you try, and kudos to you for all the beforehand infection testing.

I am on HH2, Zhang's herb used for Bartonella, and I find it effective- I am on 3x a day. After treating Lyme, cysts and parasites for many months, I felt my Bart coming back as primary. I tried to go back again to Levaquin and rifampin, couldn't handle the side effects this time, so went to HH2 and reversatrol and minocycline for the Bart. I was surprised how strong HH2 felt Bart wise. On another Lyme kids group, another mother hit a wall with her child after long term antibiotics, and actually went to Zhang's protocol (and with Zhang himself consulting) and is reporting favorably.

Megan, just an outside objective thought: When you treated Lyme in your child, did you treat any co-infections like Bartonella? Take care---sending PV's---

Phosphatidylserine- PS 100 Very few supplements for dd I will say 'Yes, I noticed a positive effect directly from this', but this one is on that short list. As you know, we went to Risperadone for the last 6 months after a very dark period- worked for about 3 months- then stopped (no surprise, right?) During this time, I stopped using PS 100. Finally got her titrated to tiny dose of risperadone, tomorrow she is off 100%, and just this morning started PS 100 again. This is an expensive supplement. I can't tell you technically what it does. For us, and I do know, believe me and my $cabinets$ full of supplements, all our kids do not respond the same, but I swear in the past I notice this calms her, and does reduce brain fog. I never thought brain fog was an issue with dd (trouble focusing, whatever you want to call it) until this year at school conference. Hoping the PS 100 hits a run for us again (and I believe it will, but had to get her off risperadone first) Anyway, on the side of the bottle, Pure Encapulations PS 100, it says: 'may reduce the risk of dementia in the elderly' (not FDA endorsed, of course) Sorry so long, xxoo LLM

Dd7 and I both have one of the 'dreaded' genes- my understanding, and this is all from the King of mold, Dr. Shoemaker, that with one or two of the 'dreaded' combo type genes, you MAY have trouble detoxing mold and Lyme disease- doesn't mean you have either, per say-- We went through the mold detox protocol, home inspections, etc. During Lyme treatment, I try (and think I do a pretty good job) of relying heavy on various detox methods--- P.S. If you google 'shoemaker Rosetta stone' it should pull up the key to figure out your son's test results.

*I read someone's testimony once, heard good things about this very product, and bought some. I am giving it to dd7 right now, but can't honestly tell you what effect it has on her. Have also used the lipo glutathione. I haven't had her glut tested, but tend to use it when she is on antibiotics, for liver health.