EAMom

I don't think the authors ever realized they were dealing with PANS/Pitand, even after writing the article.
It is also sad that this child suffered for so many years.
http://omicsgroup.org/journals/is-valacyclovir-a-mood-stabilizer-2165-7890.1000118.pdf

I have a followup appointment in one month. I don't know if he's planning on repeating the injection (which is what I think is done for rheumatic fever) but if I continue feeling better, I will ask him to do so. I just got results from the ASO titer he drew. It is still at 800.

hrosenkrantz -- yes, I think that to be the case that valtrex does the same thing that abx do with bacteria and not that it is a mood stabilizer as the author of the article thinks. but I have only this opinion, no proof.

Thank you again everybody for the well-wishes and prayers! We'll take all we can get in this situation!
 
As far as the questions with vaccines, I've had those same thoughts.
I've read/heard of cases too, like you're all mentioning, where vaccines can cause such damage, and it is that time of year for the flu shot, and boosters.
 
I would think though that with this enter-virus going around and the fact that so many of these cases seem to have started out as a respiratory infection and then in these rarer cases worsened, progressed, that it does seem like that enterovirus is involved. But who knows what may be the other common denominator is these children that is making, or causing, letting, the virus get to the central nervous system.
maybe it is that (entero) plus a vaccine reaction, or maybe it is enterovirus and another infection at the same time? or maybe that idea of enterovirus and pesticide exposures from an earlier link.
Whatever it is, to tell you the truth, the more children that are popping up with this, the most concerned I get for all kids in general. At first it was nine in CO, now…more each day. Just read an article about two in St. Louis; there are some in Canada, some everywhere really.
Not trying to be alarming or get people afraid, but as parents, it's scary to think there is something out there causing paralysis like this, and we don't really know why.
Being pro-active and trying to prevent is the best we can do.
Rowing mom sent (on an earlier comment) some links to vitamin C info., and I know so many other's here having been giving good ideas too.
 
praying that my cousin's son can beat this and that it all starts to wane in general and no more children are affected.

Guillan Barre is a complication of vaccines and specifically the flu shot.

Considering the timing, just thought I'd ask if he had any vaccines around this time frame (school about to start, flu shots being pushed for Fall) - even a few weeks before. I ask because a friend of ours (an adult) lost most of the use of both arms and much of his lung function (not sure if his lung collapsed or not) after an H1N1 flu shot a few years ago. He has regained most of the use of his arms but still only has partial lung function. If a vaccine was part of the picture, this doesn't give you an answer on how to treat, but would definitely be something to keep in mind in the future. Mainstream doctors would never ask this question or even entertain the idea that a vaccine could have this affect, but it happens.

pr40 -- you are saying you think it is nonsense that valtrex is a mood stabalizer, and what is actually going on is the antiviral is getting at the underlying infection, and that's why it is helping?

Absolutely, says the mom who was told her son suddenly was bipolar w/ aspergers as a side dish. Funny how it happened so suddenly after flu mist. He was not tested for an infection for one year. Funny how it all went away after antibiotics and ivig.

This is why I think ALL kids with a bipolar diagnosis should
1) be screened for infections
2) have a Cunningham Test
 
Ugh

Oh my, this paper has described a PANS kid.

What an amazing story. I'm so hopeful that "mainstream medicine" will start to ask the right questions. Instead of diagnosing a child as bipolar - again and again. Ask "why is he bipolar?" You don't just wake up one day at age 4 with psychosis. Something had to happen. Some sort of insult to the system.

I strongly feel that the problem all along has been labeling this disorder PANDAS and attributing everything to strep. Doctors who did consider PANDAS would give a strep test, it would come back negative and it was, "Oh, well that's not it." That's what happened with our daughter. It seems that ever since PANS has been emphasized, the acceptance, understanding, and treatment has progressed... and we're just beginning! I am hopeful!!!!!

I don't think the authors ever realized they were dealing with PANS/Pitand, even after writing the article.
It is also sad that this child suffered for so many years.
http://omicsgroup.org/journals/is-valacyclovir-a-mood-stabilizer-2165-7890.1000118.pdf

I don't think the authors ever realized they were dealing with PANS/Pitand, even after writing the article.
It is also sad that this child suffered for so many years.
http://omicsgroup.org/journals/is-valacyclovir-a-mood-stabilizer-2165-7890.1000118.pdf

http://stanmed.stanford.edu/2014fall/brain-attack.html
 
Here's a bit:
 
"Children who meet diagnostic criteria for PANS have sudden, severe obsessive-compulsive behavior or anorexia, along with so many other problems that the child can barely function. These may include separation anxiety so powerful the child cannot bear to be more than a few feet from a parent, bizarre inhibitions about food, deterioration in schoolwork, intense insomnia or, as the Nelsons observed in Paul Michael, violent rages when the child’s obsessions cannot be satisfied.
“In some ways, it’s like having your kid suddenly become an Alzheimer’s patient, or like having your child revert back to being a toddler,” says Jennifer Frankovich, MD, clinical assistant professor of pediatric rheumatology at the School of Medicine and one of the clinic’s founders.
“We can’t say how many kids with psychiatric symptoms have an underlying immune or inflammatory component to their disorder, but given the burgeoning research indicating that inflammation drives mood disorders and other psychiatric problems, it’s likely to be a large subset of children and even adults diagnosed with psychiatric illnesses,” says Kiki Chang, MD, professor of psychiatry and behavioral sciences."

I don't think the authors ever realized they were dealing with PANS/Pitand, even after writing the article.
It is also sad that this child suffered for so many years.
http://omicsgroup.org/journals/is-valacyclovir-a-mood-stabilizer-2165-7890.1000118.pdf

http://stanmed.stanford.edu/2014fall/brain-attack.html
 
Here's a bit:
 
"Children who meet diagnostic criteria for PANS have sudden, severe obsessive-compulsive behavior or anorexia, along with so many other problems that the child can barely function. These may include separation anxiety so powerful the child cannot bear to be more than a few feet from a parent, bizarre inhibitions about food, deterioration in schoolwork, intense insomnia or, as the Nelsons observed in Paul Michael, violent rages when the child’s obsessions cannot be satisfied.
“In some ways, it’s like having your kid suddenly become an Alzheimer’s patient, or like having your child revert back to being a toddler,” says Jennifer Frankovich, MD, clinical assistant professor of pediatric rheumatology at the School of Medicine and one of the clinic’s founders.
“We can’t say how many kids with psychiatric symptoms have an underlying immune or inflammatory component to their disorder, but given the burgeoning research indicating that inflammation drives mood disorders and other psychiatric problems, it’s likely to be a large subset of children and even adults diagnosed with psychiatric illnesses,” says Kiki Chang, MD, professor of psychiatry and behavioral sciences."

I am just so pleased to see that the medical community is starting to accept the idea that the autoimmune system can be connected to neuropsychiatric symptoms.....
 
I am optimistic that as the medical community moves forward, how we treat neuropsychiatric symptoms will be forever changed in many positive ways.

I just found this comprehensive link which now includes 84 studies showing that vaccination may be linked to autism spectrum disorders:
 
http://adventuresinautism.blogspot.ca/2007/06/no-evidence-of-any-link.html

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.

indeed, make sure to ask what treatment they provide BEFORE you go in.

If you're told a facility or doctor doesn't support Pandas, it means they won't use antibiotics as part of their protocol. I don't think there's a quick cure for Pandas/Pans. But I do think there are many things you can do to restore health and reduce the chances and severity of future flares. But my best advice is to work with an integrative doctor who's Pans friendly rather than wasting time and money chasing a quick cure. This is a marathon, not a sprint.

http://stanmed.stanford.edu/2014fall/brain-attack.html
 
Here's a bit:
 
"Children who meet diagnostic criteria for PANS have sudden, severe obsessive-compulsive behavior or anorexia, along with so many other problems that the child can barely function. These may include separation anxiety so powerful the child cannot bear to be more than a few feet from a parent, bizarre inhibitions about food, deterioration in schoolwork, intense insomnia or, as the Nelsons observed in Paul Michael, violent rages when the child’s obsessions cannot be satisfied.
“In some ways, it’s like having your kid suddenly become an Alzheimer’s patient, or like having your child revert back to being a toddler,” says Jennifer Frankovich, MD, clinical assistant professor of pediatric rheumatology at the School of Medicine and one of the clinic’s founders.
“We can’t say how many kids with psychiatric symptoms have an underlying immune or inflammatory component to their disorder, but given the burgeoning research indicating that inflammation drives mood disorders and other psychiatric problems, it’s likely to be a large subset of children and even adults diagnosed with psychiatric illnesses,” says Kiki Chang, MD, professor of psychiatry and behavioral sciences."

http://stanmed.stanford.edu/2014fall/brain-attack.html
 
Here's a bit:
 
"Children who meet diagnostic criteria for PANS have sudden, severe obsessive-compulsive behavior or anorexia, along with so many other problems that the child can barely function. These may include separation anxiety so powerful the child cannot bear to be more than a few feet from a parent, bizarre inhibitions about food, deterioration in schoolwork, intense insomnia or, as the Nelsons observed in Paul Michael, violent rages when the child’s obsessions cannot be satisfied.
“In some ways, it’s like having your kid suddenly become an Alzheimer’s patient, or like having your child revert back to being a toddler,” says Jennifer Frankovich, MD, clinical assistant professor of pediatric rheumatology at the School of Medicine and one of the clinic’s founders.
“We can’t say how many kids with psychiatric symptoms have an underlying immune or inflammatory component to their disorder, but given the burgeoning research indicating that inflammation drives mood disorders and other psychiatric problems, it’s likely to be a large subset of children and even adults diagnosed with psychiatric illnesses,” says Kiki Chang, MD, professor of psychiatry and behavioral sciences."