searching_for_help

When we are away from home, it never happens. I'll be calling for another radon test today.
Any functional or integrative medicine doc will say YES to EMF sensitivity. If you get on Pubmed, research shows different things, but since I spend every spare minute researching health issues, the one thing I can tell you is research outcomes are determined by whoever funds the study! 
That being said, my son, who is probably autistic, doesn't say much, NEVER complains, we have a terrible time knowing if he is uncomfortable, etc.,... when we moved here and he would go into the room with the Comcast router/modem, he would come out and say he didn't know why, but his head hurt. I was shocked, as he NEVER mentions any ills unless I quiz the heck out of him! Our doctor is a general practitioner, but her adult kids are on the spectrum, and her son had the same issues, and he uses something to sheild it and it works for him. You might want to try mercola.com, I'm sure he has some info on dangers of wifi. Plus we already know too much cell phone use causes brain cancer, and of course no one believed that when the idea first came out...
As far as avoidance, there are lots of docs posting how to avoid it. Some people put their router on a timer and shut it down for the night for a break. You should never have a tablet, phone or computer, or even your alarm clock next to your bed. Some people that get sick from it go so far as hardwiring everything, instead of wifi, like in the "good ol days"!
Yes, the canary in the coal mine is definitely real. Such as our mold issue. About 25% of people have the genetics where they don't clear the mycotoxins, so you can have a room full of people, and only a few will get sick from it. Thankfully, with epigenetic studies, these people aren't labelled "hypochondriacs". Actually, I'm the the one that made the connection with our dd. She didn't know why she would get sick, but she finally realized after years of getting sick that mold was the trigger.
There are many sites on how to protect yourself from EMF. Hard to know which ones are legit... you might want to try a European site, they seem to be much further ahead of us when it comes health issues.

http://discovermagazine.com/2010/jun/03-the-insanity-virus (this article is old, from 2010)
 
 
phase 2 clinical trial http://www.servier.com/content/geneuro-announces-launch-phase-iib-proof-concept-study-gnbac1-multiple-sclerosis-and-servier
https://clinicaltrials.gov/ct2/show/NCT02782858 (news article 2015)
 
Really interesting stuff, though I wish science moved a little bit faster!

Just an update. DD's shingles rash didn't progress to the vesicule stage. It just began fading away, I'm assuming due to the antivirals. She had a couple of days of some pretty intense pains, but that has subsided substantially as well.

kim,
 
The first couple of days were pretty painful. We got her on antivirals 2 days after she started having symptoms, and I'm giving her some l-lysine in addition to the Valtrex. Today would be about her 3rd day on abx, and this morning she became very emotional - Bart/Pandas style out of control. I'm guessing it's partly due to herxing - she had been on antivirals about a year ago and herxed on day 3 and 4.
 
Her rash has not progressed to the oozy stage. It is still red, but a bit less so this afternoon. I'm wondering if we caught it early enough that it won't form the oozy, scabby stuff. Hoping...
 
Yes, I'm reading the same thing about shingles increasing due to the vaccine. But now they just push the shingles vaccine! And the shingles vaccine only stops the shingles in a little over half the cases, but I do think it helps some with the post-pain stuff. (Like 67%, I believe.) Ugh...
 
I'm reading a continuing education course on The Hidden Medical Causes of Mental Disorders by William Matteson, Ph.D. Wow, REALLY interesting read. He is talking about the brain, and says this: "The blood-brain barrier, which restricts the penetration of toxins to the brain, is not fully developed in humans until about one year of age. It is not known when the barrier becomes fully functional." (He is NOT talking about vaccines, but just discussing cortical growth). But that got me thinking - should we be giving vaccines to children BEFORE the blood brain barrier has developed? And should breast fed babies be given vaccines before they are done breastfeeding? There are so many questions that we aren't allowed to ask without being called ANTI-VAXXERS. Ugh! What an affective strategy to shut people up...

I forgot to mention that I spoke to Better Health Guy (not a Dr.) at one point about mold testing. Unfortunately like heavy metals testing, blood draws for Bartonella, vitamin/mineral testing and mold testing. Its all depends.
 
Heavy Metals Testing: Results will depend on if body is dumping metals at time of collection (even with chelators) Bartonella Testing: Results will depend on if Bartonella is active in blood stream at time of collection. Apparently, moves in and out of blood stream every three days. Its why Galaxy Labs does three blood draws every other day when testing. Vitamin/Mineral Testing: What is found in the blood stream on a specific day is not what is getting absorbed by ones cells. Urine Testing for Mold: Will depend on what the body is dumping at time of collection. Being 23 and sick has got to be hard!!!!

I think I've mentioned this link before. It's a continuing education course, and with this info out there, I don't understand why our kids don't get better care. Not so much that PANDAS is talked about, but that MANY "mental illnesses" are really caused by deficiencies, illnesses, etc. I thought it was fascinating.
 
http://www.continuingedcourses.net/active/courses/course067.php

I'm noticing a lot more postings of research articles and papers recently. I think this is a good sign that the medical community is starting to 'loosen up'.
Here's one about narcolepsy but with lots of references to what we all talk about all the time on these boards...
 
http://protomag.com/articles/betrayal-within
 

I'm not sure that spinal taps always show the problem. Our dd had a spinal tap when she had a chest port put in for IV abx. The spinal tap was normal, but no one ever told us what they were even testing for. We KNOW our dd has Bartonella, as the streak like rash showed up a couple of months later, but this did NOT show up on the spinal tap.
 
The same thing with urine catches - they only test for a certain number of things. They don't test for all that could be in the urine. Even mycoplasma testing - there are lots of different mycoplasma species - they usually only test for m. pneumonia. My point being our kids CAN have something wrong, but the testing leads us to believe there's nothing there, and the docs aren't trained to know what else to look for.
 
In our case the spinal tap was NOT useful. Do not beat yourself up, this is NOT YOUR fault. Sadly, our medical establishment is in too much of a rush to brush us off and send us to the psychiatrist...

kim,
 
The first couple of days were pretty painful. We got her on antivirals 2 days after she started having symptoms, and I'm giving her some l-lysine in addition to the Valtrex. Today would be about her 3rd day on abx, and this morning she became very emotional - Bart/Pandas style out of control. I'm guessing it's partly due to herxing - she had been on antivirals about a year ago and herxed on day 3 and 4.
 
Her rash has not progressed to the oozy stage. It is still red, but a bit less so this afternoon. I'm wondering if we caught it early enough that it won't form the oozy, scabby stuff. Hoping...
 
Yes, I'm reading the same thing about shingles increasing due to the vaccine. But now they just push the shingles vaccine! And the shingles vaccine only stops the shingles in a little over half the cases, but I do think it helps some with the post-pain stuff. (Like 67%, I believe.) Ugh...
 
I'm reading a continuing education course on The Hidden Medical Causes of Mental Disorders by William Matteson, Ph.D. Wow, REALLY interesting read. He is talking about the brain, and says this: "The blood-brain barrier, which restricts the penetration of toxins to the brain, is not fully developed in humans until about one year of age. It is not known when the barrier becomes fully functional." (He is NOT talking about vaccines, but just discussing cortical growth). But that got me thinking - should we be giving vaccines to children BEFORE the blood brain barrier has developed? And should breast fed babies be given vaccines before they are done breastfeeding? There are so many questions that we aren't allowed to ask without being called ANTI-VAXXERS. Ugh! What an affective strategy to shut people up...

sf_mom,
 
Thanks so much! Interesting read, and very informative.

Ibee: hair test.
 
Searching: correct, they are related..also see Zinc.
Its pure encapsulations Liquid Lithium..i assumed it was ortate

This is a really good interview w/Dr. Wakefield. Please watch and share.
 

No matter what your take is on vaccines, I think this video is important for all. I am not "pro-vaccine", and not necessarily "anti-vaccine." My friends and family on Facebook seem to think you have to be either for or against. Personally, I have made some people very angry at the mere mention some vaccines MIGHT not be safe! I do believe some vaccines have saved lives, and others are dangerous. I also know that "anti-vaccers" are being blamed for breakouts that are really due to some of the vaccines not being affective, and the CDC knows this but doesn't correct the situation. This video brings up some of my concerns that are rarely discussed, and it's not so much the thimerosol (although that is important), but the way the vaccine manufacturers are making a fortune off these vaccines and our government has made it where they can't be sued. These companies get sued for billions of dollars for their shenanigans with their other drugs, why would we expect them to be honest about research with the vaccines, when they know they can't be sued?
 
This video is of Bill Maher and Robert Kennedy, Jr. Kennedy points out the CDC can't be trusted, which I agree they have been bought off. Revolving door with lucrative paying jobs between the CDC and the vaccine manufacturers. He even mentioned Dr. Offit, his patents and the money he made off the deal. He also points out that REAL science is not always in agreement with the safety the CDC claims, but everyone blindly follows the CDC recommendations. (I don't think he pointed out that the pro-vaccine movement will immediately ruin anyone's reputation if they suggest ALL vaccines and the schedules aren't perfectly safe, but I see this all the time.)
 
And my favorite is one of Bill Maher's comments. It has to do with what I consider my more "educated" friends, who on Facebook will literally call anyone who questions vaccines "idiots" and "dangerous". They completely trust the "industry", and although I think it's pretty clear Maher is for vaccines and doesn't know much about the discrepancy, he thinks it odd they put so much trust into for-profit companies that can buy off people. So do I.
 
Here's the link, and I apologize if someone has already posted this one.
http://www.boughtmovie.com/robert-f-kennedy-jr-real-time-with-bill-maher/

No matter what your take is on vaccines, I think this video is important for all. I am not "pro-vaccine", and not necessarily "anti-vaccine." My friends and family on Facebook seem to think you have to be either for or against. Personally, I have made some people very angry at the mere mention some vaccines MIGHT not be safe! I do believe some vaccines have saved lives, and others are dangerous. I also know that "anti-vaccers" are being blamed for breakouts that are really due to some of the vaccines not being affective, and the CDC knows this but doesn't correct the situation. This video brings up some of my concerns that are rarely discussed, and it's not so much the thimerosol (although that is important), but the way the vaccine manufacturers are making a fortune off these vaccines and our government has made it where they can't be sued. These companies get sued for billions of dollars for their shenanigans with their other drugs, why would we expect them to be honest about research with the vaccines, when they know they can't be sued?
 
This video is of Bill Maher and Robert Kennedy, Jr. Kennedy points out the CDC can't be trusted, which I agree they have been bought off. Revolving door with lucrative paying jobs between the CDC and the vaccine manufacturers. He even mentioned Dr. Offit, his patents and the money he made off the deal. He also points out that REAL science is not always in agreement with the safety the CDC claims, but everyone blindly follows the CDC recommendations. (I don't think he pointed out that the pro-vaccine movement will immediately ruin anyone's reputation if they suggest ALL vaccines and the schedules aren't perfectly safe, but I see this all the time.)
 
And my favorite is one of Bill Maher's comments. It has to do with what I consider my more "educated" friends, who on Facebook will literally call anyone who questions vaccines "idiots" and "dangerous". They completely trust the "industry", and although I think it's pretty clear Maher is for vaccines and doesn't know much about the discrepancy, he thinks it odd they put so much trust into for-profit companies that can buy off people. So do I.
 
Here's the link, and I apologize if someone has already posted this one.
http://www.boughtmovie.com/robert-f-kennedy-jr-real-time-with-bill-maher/

No matter what your take is on vaccines, I think this video is important for all. I am not "pro-vaccine", and not necessarily "anti-vaccine." My friends and family on Facebook seem to think you have to be either for or against. Personally, I have made some people very angry at the mere mention some vaccines MIGHT not be safe! I do believe some vaccines have saved lives, and others are dangerous. I also know that "anti-vaccers" are being blamed for breakouts that are really due to some of the vaccines not being affective, and the CDC knows this but doesn't correct the situation. This video brings up some of my concerns that are rarely discussed, and it's not so much the thimerosol (although that is important), but the way the vaccine manufacturers are making a fortune off these vaccines and our government has made it where they can't be sued. These companies get sued for billions of dollars for their shenanigans with their other drugs, why would we expect them to be honest about research with the vaccines, when they know they can't be sued?
 
This video is of Bill Maher and Robert Kennedy, Jr. Kennedy points out the CDC can't be trusted, which I agree they have been bought off. Revolving door with lucrative paying jobs between the CDC and the vaccine manufacturers. He even mentioned Dr. Offit, his patents and the money he made off the deal. He also points out that REAL science is not always in agreement with the safety the CDC claims, but everyone blindly follows the CDC recommendations. (I don't think he pointed out that the pro-vaccine movement will immediately ruin anyone's reputation if they suggest ALL vaccines and the schedules aren't perfectly safe, but I see this all the time.)
 
And my favorite is one of Bill Maher's comments. It has to do with what I consider my more "educated" friends, who on Facebook will literally call anyone who questions vaccines "idiots" and "dangerous". They completely trust the "industry", and although I think it's pretty clear Maher is for vaccines and doesn't know much about the discrepancy, he thinks it odd they put so much trust into for-profit companies that can buy off people. So do I.
 
Here's the link, and I apologize if someone has already posted this one.
http://www.boughtmovie.com/robert-f-kennedy-jr-real-time-with-bill-maher/

Oh, beerae22, I feel your frustration! As our dd rapidly lost more and more weight, and she had physical symptoms as well, I took her to several docs, telling them of her PANDAS, and all they would do is say, "It's probably just a virus", and ask if we wanted to try another psych drug. Down to an 11 BMI, she ended up in ACUTE eating disorder center in Denver. Strangely, after only being there a few days, (not enough to get any weight on), she started feeling better mentally and physically. We can't help but wonder if the plasma exchange or the IV abx for Lyme had finally kicked in, but something had quickly made a difference in her mental condition. She isn't 100%, but is making big improvements, and ERC was pretty angry with us for pulling her out. But they won't acknowledge the PANDAS, and being isolated in an eating disorder place was really taking a toll on her mentally.
 
The WORST experience was the ED/psych unit in our state that we took her to initially. They decided in less than 24 hours to call an ethics meeting - to let us know they felt she was competent as an adult of 22 that she could make the decision to die, and they would NOT resuscitate! We were HORRIFIED. We told the whole group in the ethics meeting of her PANDAS diagnosis by 2 top docs. We also mentioned that someone with an 11 BMI could not make rational decisions (as her blood sugar had dropped and she was not herself at all.) I finally convinced dd to eat while there and I would bring her home, but then one of the staff members told her is she couldn't control her exercise on her own she could consider hospice, that it was a peaceful way to die. So dd decides she is to tired to go on, and decides to stop eating. That's when we pulled her out, Against Medical Advice. The whole thing was surreal.
 
Fortunately, ACUTE in Denver knew someone at that BMI could not make a rational decision, and told us they would do everything possible to save our dd. Not that they believed/treated for PANDAS per se, but kept her eating and monitored her medically.
 
I am on an eating disorder site called "Around the Dinner Table". It breaks my heart the parents that write in about their little kids and their "eating disorders". These are young kids who are fearful of vomiting and the like, and I just KNOW this is more of a PANDAS thing, and often they mention it will start after an illness. But when I suggest they go to the doc about PANDAS, they don't usually get anywhere, and one mother whose dd is surely PANDAS, was told by her doc that since her strep test was negative, her dd CAN'T have PANDAS. Sadly, this mom believes the doc. Thought it interesting that her other child is on the autism spectrum, which we see so often.
 
Sorry, got a bit off topic, but I so understand your frustration. NO ONE should ever have to go through the we have all been through with the medical community. So glad some change is being made to educate the medical community.

Although my opinion may be swayed by my dd's severely restricted eating as a results of Pans, even prior to that I don't think I would've ever considered having a child deliberately fast. Children are growing and need consistent nutrition- they aren't just "adults in miniature bodies". I think that not only would it pose a risk physically, but considering that most children with Pandas/Pans have OCD, having a child fast unnecessarily could send an unhealthy, or even dangerous message to someone with a compromised and impressionable mental state.
 
Just my thoughts of course, everyone has a different take on treatment methods, but IMHO this shouldn't be on anyone's list for "treatment trials" for children.

Our dd did therapy with different therapists for YEARS. Never helped. Actually dredging everything up made her feel worse, and it was obvious to her that none of them understood what she was going through - some even seemed baffled by it.
 
Lots of money, time wasted. It actually made her feel like she must be a "hopeless case".
 
I know some on here have had success with therapy, but I personally don't feel a PANDAS/PANS person can be helped much during a flare. When things calm down for them, I'm sure some could benefit, but there was never a time it was affective for our dd.

sss - yes, she's been treated for h. pylori and is currently taking Doxy for mycoP. (Also on an antiviral.) She's been on 400 mg. a day of Doxy for the last 30 days. Not seeing any improvement with the anxiety or intrusive thoughts.
 
nickelmama- you mentioned your son has the neuro and you have the arthritic. I've had weird pains in my neck, shoulder, back and knee - sometimes it seemed like it was cycling from place to place. I've often had pain in the back of my neck and it's crackly sounding. I've often wondered if it's Lyme, but have been to busy with my kids health problems to have myself checked yet. Think I will now. Also, I have Horowitz's book - I'll have to actually get it read!
 
philamom - Before the kids were born, I had a swollen lymph node under my arm, and doc noticed a cat scratch on my arm. I requested dd to be tested for Bartonella, and it was negative. (Igenex, I'm pretty sure.) I'm wondering if we might need to have that test redone.
 
putting together the piece - Fortunately, our NP is very interested in Lyme treatment and has been learning all she can. She didn't rule Lyme out after we got the results, but started treating some of the other issues first. I think now, it's time to start thinking more serious about the Lyme aspect.
 
Thank you all so much for your responses. I could not survive without this forum.

I just ran across this site, and don't know if it would be helpful or not. I believe these articles are more about the dangers of vaccines in general.
http://www.vaccinationcouncil.org/category/webinar/
 
My kids were fully vaccinated (before PANDAS diagnosis), but my dd will definitely NOT be getting the Gardasil, FluMist, or probably any of the flu vaccines.
 
Honestly, the more I read the more uncomfortable I am. I know that most doctors don't report to VAERS, even when the parents request it. We have had a pediatrician tell us that he thinks the schedule should be changed - not giving so many vaccines to babies, not so early, and not multiple vaccines at once. Yet they know they can't say anything publicly or it will hurt their reputations. Sad state of affairs, really. Everyone terrified to be labeled an "anti-vaxxer", so we just can't even question the safety. I'm not anti-vaccine, but anytime you aren't "allowed" to raise questions without people labeling you as a nut - I'm guessing something seems a bit fishy.
 
If I had to do it over again, I'd just make sure they were given later than the schedule. And not several at once. I just don't see the need in that. I read repeatedly that the baby is covered by the mother's immunity for, I think, 6 months or longer. And if that's true, then why are they jabbing the poor little things before they leave the hospital?

I contacted NIMH for info on PANDAS for our doc. They suggested this website:
 
https://www.pandasppn.org/
 
I research PANDAS daily, and never ran across this site before. Was anyone else aware of this?

I contacted NIMH for info on PANDAS for our doc. They suggested this website:
 
https://www.pandasppn.org/
 
I research PANDAS daily, and never ran across this site before. Was anyone else aware of this?

I think this article is important to consider, as well. If I were to do it all over again, I'd definitely skip the Tylenol. BTW - there are other articles online associating Tylenol use with asthma.
 
Evidence that Increased Acetaminophen use in Genetically Vulnerable Children Appears to be a Major Cause of the Epidemics of Autism, Attention Deficit with Hyperactivity, and Asthma
By William Shaw, Ph.D.
 
http://www.greatplainslaboratory.com/home/eng/Acetaminophen.asp

I think we should all print out this page from the Pandas Physician's Network, and take it in to all docs too lazy or arrogant to help our children:
 
https://www.pandasppn.org/committee-members/
 
When nay-sayers start there BS, we can show them that docs from Harvard, Stanford, Columbia, Yale, etc. are on board because they've taken the time to learn about PANDAS, instead of being lazy and not bothering to look into it, because that's all it boils down to. I'm beyond disgusted with the medical community.

I contacted NIMH for info on PANDAS for our doc. They suggested this website:
 
https://www.pandasppn.org/
 
I research PANDAS daily, and never ran across this site before. Was anyone else aware of this?