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Is Strep Linked to Scary Kids’ Behavior Disorder?

When Garrett Pohlman was diagnosed with strep throat in 2007, his illness didn’t respond to antibiotics. Then the strange behaviors began.

Diana Pohlman says her son, who was 7 years old at the time, had been easygoing up to that point. But he developed severe obsessive compulsive disorder (OCD) symptoms overnight. He became paranoid – worrying about things like radiation from the TV and light switches. He had tics and anorexia and started having frequent episodes of rage.

“He was not anyone I recognized. He was a completely different child,” she says. “It was a nightmare. At first I thought maybe he had been molested. Then I thought he had a brain tumor.

“He became so delusional he would climb on the roof thinking it was the front door. He would jump in front of cars and out of moving cars, and he had self-harm fantasies. He was afraid to leave the house. We had to pick him up and wrap him in a sheet to get him out of the house. At the age of 7,” Pohlman says.

 

He was not anyone I recognized.
He was a completely different child.
Diana Pohlman

The search for answers was long and expensive. After many months, the family found their way to a psychiatrist who knew about a disorder called pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, or PANDAS, a condition she says several specialists didn’t know about. That led to medical treatment that included long-term antibiotics, having his tonsils and adenoids removed, and eventually two rounds of immunoglobulin, or IVIG treatments.

Recovery was slow, but after 2 years, by the age of 9, Pohlman says the severe symptoms stopped. For another 2 years, he had what she calls mild and manageable symptoms that eventually dissipated.

But rather than move on from PANDAS, the boy’s mother decided she needed to help other parents trying to figure out these mysterious symptoms. She founded the nonprofit PANDAS Network in 2009 to raise awareness, support families, and push for more research to better understand how to diagnose and treat the condition.

“When I realized doctors didn’t understand it, I thought I better not quit working on this because how will anyone else ever get help,” Pohlman explains. “It is abysmal. It has been shocking how misinformed doctors are about the term ‘PANDAS.’ ”

Little is known about how or why the syndrome happens, and not all doctors believe there is a connection. The American Academy of Pediatrics does not recognize a link between strep and the syndrome.

“You will not find consensus from pediatric infectious disease doctors that PANDAS even exists, much less what to do about it and how to manage the patients,” says Meg Fisher, MD, a pediatrician and infectious disease specialist at Unterberg Children’s Hospital at Monmouth Medical Center in Long Branch, NJ. “We still haven’t had the definitive article or study or demonstration to really get some solid clinical evidence behind this. My problem is, even if you believe in the syndrome, it’s totally unclear what you should do to help those patients. All of the information is anecdotal.”

What Is PANDAS/PANS?

Susan E. Swedo, MD, at the National Institute of Mental Health (NIMH), first identified PANDAS in the 1990s after she reported on a link between the fast onset of OCD and group A streptococcus, more commonly known as strep.

You will not find consensus from pediatric infectious disease doctors that PANDAS even exists, much less what to do about it and how to manage the patients.
Meg Fisher, MD, Unterberg Children’s Hospital, Monmouth Medical Center

PANDAS happens when strep triggers a misdirected immune response that causes inflammation in a child’s brain. Pediatric acute-onset neuropsychiatric syndrome, or PANS, is a larger umbrella term that has to do with cases with a trigger other than strep, including infections like walking pneumonia or the flu.

Both disorders appear in childhood, typically between the ages of 3 and 12. While blood tests may help identify infections, there are no lab tests or other indicators for PANDAS or PANS.

Doctors diagnose the syndrome when children suddenly get severe OCD or eat a lot less food, along with at least two of the following symptoms: anxiety, depression, irritability or aggression, behavioral regression, ADD- or ADHD-like symptoms affecting schoolwork, sensory or motor problems, troubled sleep, and frequent urination.

The PANDAS Network says in some cases, the emotional symptoms can weaken children and make them homebound. Other children are OK at school but fall apart at home. The NIMH describes the start of symptoms as “dramatic,” happening “overnight and out of the blue.”

“The consensus of scientists and clinicians is that it needs to be sudden and severe,” says Margo Thienemann, MD, co-director of the PANS program at Stanford University Medical Center in California. “Sudden can be overnight. Some people can say exactly what time it started or that it happened over a couple of days. But they all say this isn’t their child anymore. Even if they don’t believe someone can be possessed, it feels that way. What happened? Why are they doing these things? Why can’t they stop?”

Swedo estimates that it impacts about 1% of elementary school-aged children and is likely under-diagnosed. The PANDAS Network estimates 1 in 200 children have it. Thienemann says her program at Stanford has seen more than 250 patients since it started in 2012. But she says that since their staff is small, they have to narrow down who gets in. One year, they turned away 1,000 patients because they couldn’t handle any more.

Thienemann says this is why they have helped write guidelines to allow health care providers to identify and treat these children. “It takes a multidisciplinary team to manage. A psychiatrist, pediatrician, or rheumatologist can’t do it alone. You need all these different vantage points to diagnose and coordinate care,” she says.

There are now PANS centers in California and Arizona, and some doctors around the country treat the disorder.

The NIMH says research suggests IVIG can ease symptoms and may be used in severe PANDAS cases, but it warns it has many side effects — including nausea, vomiting, headaches, and dizziness — and there is a chance of infection with this sort of procedure. Parents say it is also expensive and often not covered by insurance.

Some families say they also see improvement when they have their children’s tonsils and adenoids removed, although no studies show that works.

streptococcus pneumonia bacteria

Controversy

Not all in the medical community agree that strep or other infections can trigger these kinds of behaviors. There is also much debate about whether treatments are effective.

While the American Academy of Pediatrics does not recognize a link between strep and PANDAS, a March 2017 article in AAP News, sent to the group’s 66,000 pediatrician members, discusses the disorders and the controversy around them. While it’s not the group’s official policy, the article says pediatricians should consider PANS anytime a child “has an abrupt behavior change with obsessive thoughts,” and it points them to material that shows them how to diagnose it.

Fisher says it’s complicated for pediatricians, since there is no evidence that taking out tonsils and adenoids is helpful or that antibiotics work. She says many pediatricians worry that young patients will become resistant to antibiotics if you prescribe them long-term, and many have concerns about IVIG side effects.

“I understand the parents’ frustration, because finding a physician for these patients is very difficult. There are a lot of doctors who are, quote unquote, PANDAS specialists, but there is nothing that is evidence-based about what they are doing,” she says. “Our goal is first do no harm, and it is hard to know how best to help these patients. It is a very frustrating thing. I wish someone would come up with some solutions.”

Thienemann says most parents who find their way to her program are frantic because they can’t get help anywhere else. “Part of that desperation is nobody would listen to them. People say my pediatrician won’t do anything, and my child is trying to jump out of moving cars or a window. They can’t get out of the house, can’t sleep, are urinating on themselves, and have severe separation anxiety,” she says.

 

There is something medically wrong. There isn’t a finger to be pointed. There are questions to be asked and answered.
Ali Claypoole

Parents say it is obvious something isn’t right.

“I thought she had schizophrenia or severe mental illness,” says Kelly, a mother in Maryland who asked that we not use her last name to protect the privacy of her 7-year-old daughter, Maggie, who has PANDAS. “It was rapid-onset OCD, and then we were spending our entire life trying to keep her from jumping out of cars, hurting herself, biting us, and losing her mind.”

“There is something medically wrong. There isn’t a finger to be pointed. There are questions to be asked and answered,” adds Ali Claypoole, whose son, now 9 years old, first showed PANDAS symptoms at the age of 6. “Our world is turned upside down, and from where I am, it’s almost like parents are more informed than the doctors. I find the civilian community is much more understanding, interested, and willing to learn about this than the medical community. It makes me mad.”

Going Forward

More research is now being done.

In a 2017 large-scale study of key parts of the PANDAS theory, researchers looked at 17 years of data out of Denmark and found that young patients with a positive strep test had higher chances of having of mental disorders, especially OCD and tic disorders, compared with those without a positive strep test. Non-strep throat infections also carried a higher chance of these types of mental disorders in children, although it was less – perhaps pointing to the chance that other infections can trigger the symptoms.

It is really the brain inflammation  
that is central to this disease.
Dritan Agalliu, PhD, Columbia University Medical Center

In 2016,  Dritan Agalliu, PhD, an assistant professor in the Department of Neurology at Columbia University Medical Center in New York City, published a study showing that immune cells produced in the nose after multiple strep infections appear to be the culprit for the disease. These cells enter the brain via the nerves that are responsible for the sense of smell, and they damage the blood vessels and synapses in the brain.

Agalliu says this research helped explain a crucial step in the disease: how antibodies that the body makes to attack strep or other infections cross the blood/brain barrier in these children and attack parts of their brain by mistake; similar to what happens in other autoimmune diseases of the brain, like multiple sclerosis.

The NIHM recently awarded Agalliu nearly $2 million to keep studying the disorder. He says it should be called post-streptococcal basal ganglia encephalitis, or inflammation of the brain. He’s also doing research funded by a private donor, looking at genetic chances of having the disorders to understand why a small number of children who get multiple strep infections are prone to get the disease.

“It is really the brain inflammation that is central to this disease. If we think about PANDAS/PANS this way, it will relieve a lot of controversy and make therapies more acceptable for patients,” Agalliu says. “I am hoping with our next publication, we can alleviate any potential question that this is an autoimmune disease.”

There’s also increasing interest in looking at PANDAS as a type of Sydenham chorea, defined by abnormal movements, OCD, mood swings, and other emotional symptoms that follow strep infection.

The NIMH now has a group for PANDAS and PANS. The PANDAS Network is working to make information about the disorders part of continuing medical education for pediatricians, and a working group has created handouts to educate school personnel nationwide to help children with these disorders get back to their classrooms.

So will children outgrow PANDAS? Like most other things associated with this disorder, there is no consensus.

Doctors who focus on the disorders say when patients can get to them, improvement is possible. “If we get people as early as possible, maybe even at the onset of illness, I think we do a good job of being able to tamp down inflammation and help them a lot and maybe get them all the way better,” Thienemann says. “If someone has been dealing with it for 10 years, I think they may develop ongoing autoimmune problems and there may be damage to their brain. Recovery might not be as complete, but I think we can still help them.”

Three years after he first showed symptoms, Claypoole’s son had a full remission at the age of 9 after IVIG treatments. But after a few months, he got strep again and the PANDAS symptoms returned, but they were less severe. Kelly’s daughter Maggie has seen her symptoms subside for a while, only to return. Her doctors prescribe antibiotics and anti-inflammatories after each new episode. She takes both medications daily for months on end. She has also had two rounds of IVIG. “Every time we do an intervention, the baseline gets better, but it doesn’t end the problem. She is not symptom-free,” Kelly says.

Pohlman says her son, now 17, is a straight-A student who plays football and the cello and is applying to college. He is symptom-free.

“Once I understood that Garrett’s brain was on fire from an infectious illness, I barely could believe his body would have the capacity for a full recovery,” she says. “Could he have the normal life I had expected for my child? So I look at him now in amazement.”

 

By Jennifer Clopton       Nov. 10, 2017     WebMD Article Reviewed by Hansa D. Bhargava, MD on November 10, 2017

Sources
Ali Claypoole, Maryland.
Kelly, Maryland. (Requested not using last name)
Dritan Agalliu, PhD, Columbia University Medical Center, New York City.
Meg Fisher, MD, Unterberg Children’s Hospital at Monmouth Medical Center, Long Branch, NJ.
Diana Pohlman, executive director, PANDAS Network, Stanford, CA.
Patricia Rice Doran, EdD, associate professor, Department of Special Education, Towson University, Maryland.
Margo Thienemann, MD, Stanford University School of Medicine, Stanford, CA.
AAP News: “PANDAS/PANS treatments, awareness evolve, but some experts skeptical.”
American Academy of Pediatrics Red Book: “Group A Streptococcal Infections.”
National Institute of Mental Health: “PANDAS, Questions and Answers.”
National Institute of Mental Health: “Guidelines published for treating PANS/PANDAS.”
PANDASNetwork.org: “What is PANS?” “What is PANDAS?” Symptoms,” “Statistics,” “Our Mission.”
K. Chang, Journal of Child and Adolescent Psychopharmacology, Feb. 1, 2015.
R. Kurlan, Pediatrics, June 2008.
S Orlovska, JAMA Psychiatry, July 1, 2017.
K.A. Williams, Brain Research, August 18, 2015.
T Dileepan, The Journal of Clinical Investigation, January 4, 2016.

source: WebMD 
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Health Tip Tuesday

Get smelly. 

Garlic, onions, spring onions and leeks all contain stuff that’s good for you. A study at the Child’s Health Institute in Cape Town found that eating raw garlic helped fight serious childhood infections.

 

Heat destroys these properties, so eat yours raw, wash it down with fruit juice or, if you’re a sissy, have it in tablet form.


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Vitamin D Can Protect Against Colds, Flu, Study Suggests

Taking extra vitamin D can protect against colds, flu and other respiratory infections, said a study Thursday which reopened a debate on the usefulness of over-the-counter supplements.

A review of 25 clinical trials in 14 countries, some with conflicting results, yielded “the first definitive evidence” of a link between vitamin D and flu prevention, researchers claimed in The BMJ medical journal.

The effects were strongest for people with very low levels of the nutrient which is found in some foods and can be synthesised by the body when the skin is exposed to ultraviolet light.

Many people, especially in grey, cloudy climes, do not have enough vitamin D.

Scientific studies over the years have delivered contradictory conclusions on the topic.

Some have shown that low levels of the vitamin increase the risk of bone fractures, heart disease, colorectal cancer, diabetes, depression, Alzheimer’s disease and death.

Others said there is no evidence of a link to disease risk.

For the new study, researchers from the Queen Mary University of London conducted the biggest-ever survey of trials involving nearly 11,000 people.

Sunshine
Vitamin D is found in some foods and can be synthesized
by the body when the skin is exposed to ultraviolet light.

And they found clues as to why supplements seem to work in some trials but not in others.

“The bottom line is that the protective effects of vitamin D supplementation are strongest in those who have the lowest vitamin D levels, and when supplementation is given daily or weekly rather than in more widely-spaced doses,” lead researcher Adrian Martineau said in a statement.

‘Undeniable’

Vitamin D is thought to protect against respiratory infections, including bronchitis and pneumonia, by boosting levels of antibiotic-like peptides in the lungs, said the team.

This fits with an observation that colds and flu are more common in winter and spring, when vitamin D levels are lowest.

It may also explain why vitamin D seems to protect against asthma attacks, they said.

In an editorial published with the study, experts Mark Bolland and Alison Avenell said it should be viewed as a hypothesis in need of scientific confirmation.

Louis Levy, head of nutrition science at Public Health England, shared their caution.

“This study does not provide sufficient evidence to support recommending vitamin D for reducing the risk of respiratory tract infections,” he said via the Science Media Centre in London.

Other observers were more optimistic.

The case for universal vitamin D supplements, or food fortification, “is now undeniable,” concluded Benjamin Jacobs of the Royal National Orthopaedic Hospital.

AFP     Thursday, February 16, 2017


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Eczema’s Effects More Than Skin Deep

Itchy skin condition also linked to a number of other ills, skin specialist says

People dealing with the itchy skin condition known as eczema may have other medical conditions to cope with as well, including heart disease, a dermatologist says.

Eczema, which causes dry, red patches of skin and intense itchiness, affects an estimated one-quarter of children in the United States. And, as many as seven million adults also have eczema, Dr. Jonathan Silverberg said in an American Academy of Dermatology news release.

“Although it affects the skin, eczema is not just skin-deep. This disease can have a serious impact on patients’ quality of life and overall health, both physically and mentally,” Silverberg said.

He’s assistant professor in dermatology, medical social sciences and preventive medicine at Northwestern University Feinberg School of Medicine in Chicago.

skin-cancer-doctor-seeing-patients

Eczema has been linked to an increased risk of health conditions such as asthma, hay fever, food allergy, obesity and heart disease, Silverberg said.

The reasons for this are unclear. But, the connection may be eczema-related inflammation affecting the entire body, he said. Or, the negative effects of eczema symptoms on sleep and health habits may play a role, he added.

People with eczema also have a higher risk of skin and other infections. And, the frequent intense itching of eczema and its effect on the skin’s appearance may contribute to a greater risk of mental health disorders, such as anxiety and depression, Silverberg said.

Controlling flare-ups of eczema symptoms may help reduce the risk of problems such as sleep disturbance, but heart disease and other conditions may develop due to eczema’s long-term effects on the body, Silverberg said.

That’s why it’s important for treatment to not only improve symptoms in the short-term, but also to manage eczema for the long-term, he said.

By Robert Preidt     HealthDay Reporter     FRIDAY, July 29, 2016 (HealthDay News) 
SOURCE: American Academy of Dermatology, news release, July 28, 2016
 


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How Probiotics May Save Us from Superbugs

We’ve been engaging in a warfare of sorts lately, against bacteria that are quickly learning to outsmart our weapons of choice—antibiotics. Consider that more than 70 percent of all bacterial infections in hospitals are resistant to at least one of the antibiotics used to treat them, according to the Food and Drug Administration (FDA). But there is an interesting plot twist in this war: new players have emerged in the form of probiotics. While we more often consider probiotics for gut health and to prevent antibiotic-induced diarrhea, a growing body of research now points to probiotics as potentially beneficial against superbugs.

First, let’s compare antibiotics and probiotics. “Antibiotics,” literally translates to mean “against life” because these drugs indiscriminately kill bacteria, both pathogenic and beneficial ones, albeit fewer and fewer disease-causing bacteria as they become increasingly resistant to the drugs. By comparison, “probiotics” means “in favor of life” or “promotes life,” since these beneficial bacteria encourage health. But, that’s not all they do.

Exciting new research shows that some strains of probiotics are killing superbugs even when antibiotics stop working. Even better, research demonstrates that superbugs do not develop resistance to probiotics in the way they learn to resist antibiotics. That’s good news as more and more bacterial infections are no longer responding to antibiotic drugs.

In the case of the bacteria Helicobacter pylori, or H. pylori, a primary cause of gut disorders like ulcers, the bacteria has been found resistant to multiple drugs. However studies show that the probiotic known as Bifidobacteria bifiform is helpful against H. pylori infections.

sick

Perhaps one of the most widely reported cases of antibiotic resistance can be found in an infection known as methicillin-resistant Staphylococcus aureus, better known as MRSA, a serious infectious disease that many people contract after a hospital stay. Antibiotics only work against MRSA in one way—attempting to kill the bacteria. But, according to research in the International Journal of Antimicrobial Agents, probiotics like Lactobacillus acidophilus have been found to work on MRSA infections in three ways:

1) The probiotics compete with S. aureus infectious bacteria for nutrients and attachment to the mucous membranes of the body;

2) The probiotics secrete compounds known as bacteriocins that actively kill the infectious bacteria; and

3) L. acidophilus inhibits S. aureus from producing a coating known as a “biofilm” that protects the disease-causing bacteria from being discovered by the body’s immune system.

And, that’s just the beginning. Probiotics are even showing promise against viruses, something antibiotics have never been able to do. Antibiotics have only ever worked against bacterial infections.

By: Michelle Schoffro Cook     November 27, 2015     Follow Michelle at @mschoffrocook

To learn more about probiotics in the prevention and treatment of superbugs and infections,
check out  The Probiotic Promise: Simple Steps to Heal Your Body from the Inside Out (DaCapo, 2015).


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The 60-Second Morning Habit That Fights Colds and Infections

Shubhra Krishan     June 2, 2015

As a kid, I was taught to gargle after brushing, using lightly salted water. My mother added an element of fun to it by asking me to think of the germs in the mouth as enemies out to destroy teeth. The act of gargling, she said, would flush out any remaining villains.

Some four decades later there came a Japanese study that tossed up the health benefits of gargling. During this study, 400 volunteers were studied for 60 days during cold and flu season. Some of them were asked to gargle thrice a day, while the rest followed their usual oral routine.

At the end of the study, researchers noted a 40 percent decrease in upper respiratory tract infections among those who had gargled regularly.

Although the exact reason why gargling helps oral health is not clear, scientists do know that a lot of the bacteria that causes bad breath and infection reside in the back of the throat. The New York Times quotes Dr. Philip T. Hagen, editor in chief of the “Mayo Clinic Book of Home Remedies,” pointing out that the saline solution loosens thick mucus and draws excess fluid from inflamed tissues in the throat.

gargling kids

How to Gargle Correctly:

Use warm water. Plain tap water is fine.

Use just a little salt. About 1/4 to 1/2 teaspoon in 8 ounces of water, suggests Mayo Clinic.

Make sure you don’t swallow the salt. Keep the salted water burbling in the back of your throat for 25 to 30 seconds at a time, then spit out.

If you find salt unpleasant, try gargling with mint or lemon flavored water, or just plain water.

New to gargling? It helps to tip your head as far back as you can, and open your mouth wide.