Archive for the ‘PANS’ Category

Finding the Right Psychotherapist for Your Child with Lyme Disease

https://www.lymedisease.org/finding-right-psychotherapist-berenbaum/

Finding the right psychotherapist for your child with Lyme disease

sandy-berenbaum-headshot-238x300

By Sandra K. Berenbaum, LCSW

For some parents and children confronting the challenges of Lyme disease, psychotherapy or family therapy can be a big help. Before seeking a psychotherapist, however, there are a number of things to consider. Different therapists use a wide variety of techniques in their work with clients. Methods that work well for the general client population may not be effective for Lyme patients. Some may actually be counterproductive.

For example, if the therapist doesn’t realize that fatigue in Lyme patients is far beyond merely being tired, she may expect more than the patient is capable of doing. If the therapist doesn’t understand the reason for long-term medical treatment, and a 16-year-old girl complains about being on antibiotics, the therapist might support the teenager’s position, and encourage her to stand up to her parents on the issue. Without appreciating the complexities of tick-borne diseases, a therapist may not understand the many reasons why patients cannot attend school for long periods of time, or go away to college right after high school graduation.

One goal of psychotherapy is to promote improvements in the way a client functions—going to school or work, doing well there, being able to do errands and chores. Yet, for many Lyme patients, no amount of psychotherapy will improve their ability to function. That’s because their functional problems stem from their physical illness, which won’t be fixed without effective medical treatment. A therapist who knows this will understand the need to help the Lyme patient set different goals than could be reachable for a client that does not have Lyme.

There is widespread misunderstanding of Lyme disease in the medical arena. Just reaching a diagnosis of Lyme disease can be a traumatic experience for the child and the whole family. This trauma, on top of that caused by the illness itself, can give rise to issues not present among others seeking therapy, even those with most serious illnesses.

Consider the following scenario, an example of one I commonly see with families in my practice. When their 8-year-old son first starts exhibiting joint pain, headaches or other symptoms, the parents take him to the pediatrician. Not recognizing that he may have Lyme disease, the doctor tries a variety of treatments that do not bring relief. Then he refers them to a rheumatologist or other specialist, who also fails to consider that Lyme disease might be the cause of this boy’s illness. The specialist tries a variety of treatments that don’t help either. The child continues to complain about pain and misses a lot of school because of it. Suspecting that the problem is psychosomatic, the doctors give up exploring underlying medical explanations. They refer the child to a psychiatrist.

The psychiatrist, who also doesn’t know much about Lyme disease, presumes that these symptoms are caused by a mental illness and prescribes psychiatric medication. With undiagnosed Lyme disease, those drugs may have a paradoxical effect or none at all. Then, the psychiatrist becomes convinced that the child is mentally ill. He may even decide it’s severe enough for him to be admitted to a psychiatric hospital. In the hospital, this child with undiagnosed Lyme disease will be “treated,” perhaps with more psychotropic medications, along with individual and group therapy. All of this treatment is focused on the psychiatric illness that the doctors have presumed this child certainly has.

In my experience, many Lyme patients are misdiagnosed with mental illness because doctors fail to uncover the physical origin of their symptoms. The problem is not limited to tick-borne diseases. According to Harvard psychiatrist Barbara Schildkrout, more than 100 physical ailments can manifest symptoms that appear to be mental illness. In her book “Unmasking Psychological Symptoms,” Schildkrout writes:

Many widespread and familiar maladies can masquerade as mental disorders: thyroid disorders, diabetes, Alzheimer’s disease and other dementias, sleep apnea and other sleep disorders, temporal lobe epilepsy, HIV, the long-term consequences of head trauma, Lyme disease, and the side effects of medications, to name only a few. These and other physical conditions are common in patients who are seen by mental health practitioners; these medical conditions are also often the very source of the presenting clinical picture.

Dr. Robert Bransfield is a psychiatrist and noted expert on how Lyme disease affects the brain. He says Lyme-related psychiatric symptoms may start with brain fog and fatigue, progress to anxiety and depression, and eventually lead to major psychiatric disorders such as psychosis and suicide. He characterizes Lyme disease as a brain trauma and notes that it can cause different impairments in different people.

Most research into Lyme and the brain looks at adults, not children. However, in 2001, a study published in the Journal of Neuropsychiatry and Clinical Neurosciences compared children with neurological Lyme disease to healthy control subjects. The researchers found that children with Lyme had significantly more cognitive and psychiatric issues. They concluded, “Lyme disease in children may be accompanied by long-term neuropsychiatric disturbances, resulting in psychosocial and academic impairments.”

Excerpted from “When Your Child Has Lyme Disease: A Parent’s Survival Guide,” by Sandra K. Berenbaum, LCSW, and Dorothy Kupcha Leland. Published by Lyme Literate Press. Berenbaum has a psychotherapy practice that focuses exclusively on Lyme disease patients and their families. She is a member of ILADS and advises a number of Lyme patient advocacy groups. Her website is LymeFamilies.com.

______________

**Comment**

Fantastic article.  I highly recommend Berenbaum and Leland’s book as it will be a helpful resource for parents who have infected children.  I always thank and encourage family members who attend the support group as in my experience patients who have family support always do better than those are fight alone.  We all need someone in our corner, believing us, encouraging us, studying and learning with us, and sticking up for us.  It validates us when we find ourselves in an unpopular experience that is vilified by the medical community at large.  This alone creates a whole host of issues such as depression and anxiety.  Patients are often abused by the very professionals they seek for help.  It’s a horrible situation.

For more on the psychiatric issues with Lyme/MSIDS/PANS:

https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/

https://madisonarealymesupportgroup.com/2017/01/17/lymemsids-and-psychiatric-illness/ and https://madisonarealymesupportgroup.com/2017/11/01/lyme-mental-illness-dr-jane-marke/ (both links with great info by Dr. Marke)

https://madisonarealymesupportgroup.com/2017/10/08/misdiagnosed-how-children-with-treatable-medical-issues-are-mistakenly-labeled-as-mentally-ill/

https://madisonarealymesupportgroup.com/2017/06/30/child-with-lymemsidspans-told-by-doctors-she-made-it-all-up/

https://madisonarealymesupportgroup.com/2018/01/05/scary-side-of-childhood-strep/

https://madisonarealymesupportgroup.com/2017/10/09/today-is-panspandas-awareness-day/  “Trifiletti officially diagnosed Carson with PANS, not PANDAS, due to the active co-infections found in his blood work: mycoplasma, the bacteria that causes pneumonia; coxsackie — the virus causing Hand, Foot and Mouth disease; streptococcus, the bacteria causing strep throat; bartonella and babesia — a bacteria and parasite related to Lyme disease; and yeast, Melissa Spears said.  Instead of attacking these infections, Carson’s antibodies were instead going after his brain.”  (Many other links within this article)

https://madisonarealymesupportgroup.com/2017/10/01/panspandas-steroids-autoimmune-disease-lymemsids-the-need-for-medical-collaboration/  Boy’s Lyme Disease Morphs into Autoimmune encephalopathy. It took 10 years and 20 doctors to find out 12-year-old Patrik had Lyme disease. Just 4 months later the doctors discovered he also has a condition where his immune system attacks his brain. Dr. Souhel Najjar, Cahalan’s doctor, heroically saves the day again.”

 

 

 

Scary Side of Childhood Strep

https://www.washingtonpost.com/news/parenting/wp/2018/01/03/out-of-the-blue-the-scary-side-of-childhood-strep/?utm_term=.9c0483c2a253  by Deanne Haines Jan. 2018

I almost didn’t take my 7-year-old son, Luke, to the doctor right away when he experienced a sudden onset of excessive blinking. He had just started a new school and was having trouble adjusting so I figured the stress of trying to fit in was producing this psychological habit.

I had no idea at the time his tics were the result of a strep infection I never even knew he had. Thankfully, our pediatrician made the correct diagnosis and treatment began immediately. My son was one of the lucky ones.

Kristin Kutz’s daughter, Abigail, came home from her first day of third grade excited and eager to go back. “Best day ever!” she exclaimed. The next day — out of the blue — she cried uncontrollably, insisting she couldn’t go back to school even though she didn’t know why. This dramatic, uncharacteristic behavior kept up for weeks. A nurse eventually found strep in her system.

Extroverted and happy is how Tammy Dalsin described her 10-year-old daughter, Ella, until one November evening — just one week after completing antibiotic treatment for strep. That night — forever burned into Dalsin’s memory — is when Ella abruptly developed strange, obsessive compulsive disorder- or OCD-like behavior, resulting in a four-month nightmare of frustrating doctor visits until finally receiving a diagnosis of PANDAS.

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. PANDAS occurs when a strep infection sets off a misdirected immune response in the child’s brain. Instead of fighting the infection, the immune system attacks the basal ganglia — a part of the brain that controls emotions and movement. This can result in extreme obsessive-compulsive characteristics, tics and other debilitating behavior.

“If it comes out of the blue and you’re struck by how odd it is, that’s a sign it may be PANDAS,” says Susan Swedo, chief of the Pediatrics & Developmental Neuropsychiatry Branch at the National Institute of Mental Health. Swedo and her team first identified PANDAS in 1998.

“Parents tell us PANDAS changes their child so dramatically it’s almost like their child is gone, and somebody else took her place,” Swedo says.

That’s exactly how Dalsin felt in 2011 when Ella all of a sudden couldn’t get herself to walk through a doorway.

“We were going from the garage into the house, and she kept going up and down the steps. She couldn’t make herself go in. She grabbed her hair with both hands and was screaming and crying. She was panicking because she didn’t know what was happening to her,” Dalsin said.

Ella’s symptoms got progressively worse. Her mind reeled with obsessive-compulsive thoughts, such as needing to touch the wall 10 times, otherwise something bad would happen. Ella was wrought with anxiety and could barely function. She missed weeks of school and had to quit hockey — a sport she loved to play. A visit to the pediatrician provided no answers. It wasn’t until the Dalsins did their own extensive Internet research that they discovered a probable cause.

“We read the PANDAS description, and it sounded exactly like her. We were convinced,”  Tammy Dalsin said.

Unfortunately, PANDAS isn’t easily diagnosed.

“It’s harder to recognize,” says Kiki Chang, director of PANS Psychiatry Research at Stanford University Medical Center, “because mild cases get missed and some of the major cases, too, because they get misdiagnosed as primary psychiatric illness.”

Many doctors are still unfamiliar with PANDAS, a relatively new disorder. Others refuse to believe it even exists, not accepting that an infection could be the cause of a behavioral disorder.

That explains the Dalsins’ hellish few months of unproductive doctor visits, including to a neurologist, psychologist and psychiatrist, before a different child psychiatrist confirmed their suspicion of PANDAS. Finally, Ella could start her long road to recovery.

Nine-year-old Abigail’s PANDAS also went undiagnosed by the first physician she saw — a psychiatrist. After the initial visit, he was ready to refer Abigail to a special school for children with severe mental disorders. Abigail’s parents sought a second opinion. This time a registered nurse ran blood tests and found strep in Abigail’s body, recognizing PANDAS was probably the cause of her abrupt onset of crying outbursts and refusal to go to school.

Abigail did return to school more than a month later, but she often ran out of the classroom to hide — one time hiding in a school kitchen cupboard where no one could find her for hours. Abigail’s handwriting skills decreased dramatically, and she started refusing to eat — two common PANDAS symptoms.

Experts say PANDAS affects 1 in 200 children and is “definitely present in every elementary school in the country,” Swedo said. She says it may go unnoticed, though, because children often try to hide their symptoms.

While not every child who gets strep develops PANDAS, family history of autoimmune illnesses and anxiety increase the risk.

PANDAS treatment consists of antibiotics to fight the infection along with cognitive behavioral therapy and/or antidepressants. The longer the child goes with untreated PANDAS, however, the more serious the symptoms and more intense treatment is needed.

“We’re working with Departments of Health in several states to increase awareness by both parents and clinicians. If we can help pediatricians recognize and treat PANDAS in its early stages, it can make a huge difference in that child’s life,” Swedo says.

Take it from me. My son was in the pediatrician’s office no more than 10 minutes when the term PANDAS was mentioned. The immediate antibiotics and simple behavioral therapy were just a blip in the road for my son — who now at age 13 barely remembers the experience.

It’s a very different story for Ella and Abigail, whose PANDAS was not caught until much later. After months of intense therapy, Ella was put on long-term antibiotics and continues to take antidepressants six years later. Diagnosed in October 2016, Abigail still suffers relapses and continues working with health professionals to completely eradicate her symptoms. Her outbursts have decreased, and she’s beginning to eat normally.

Every little bit of progress brings hope to her family that there is life after PANDAS.

Deanne Haines is a freelance writer and mother of three from Wisconsin.

Follow On Parenting on Facebook for more essays, news and updates. You can sign up here for our weekly newsletter. Join our discussion group here to talk about parenting and balancing a career.

____________

**Comment**

A highly respected LLMD here in Wisconsin has found that 80% of his PANS kids also have Lyme/MSIDS (borrelia and other coinfections).  There’s much that is still unknown about this life-changing illness but tick borne illness (TBI’s) can definitely cause or exacerbate PANDAS/PANS.

The take home: do your own research, ask questions, and don’t allow egotistical medical professionals to patronize you by telling you that you or your child are making it all up. Call them to the carpet. If they refuse to help, go elsewhere, to someone who will listen to you and believe you.

For more:  https://madisonarealymesupportgroup.com/2017/06/30/child-with-lymemsidspans-told-by-doctors-she-made-it-all-up/

https://madisonarealymesupportgroup.com/2017/10/01/panspandas-steroids-autoimmune-disease-lymemsids-the-need-for-medical-collaboration/

https://madisonarealymesupportgroup.com/2017/12/01/guidelines-for-treating-pans-its-real/

https://madisonarealymesupportgroup.com/2017/10/08/misdiagnosed-how-children-with-treatable-medical-issues-are-mistakenly-labeled-as-mentally-ill/

https://madisonarealymesupportgroup.com/2017/10/09/today-is-panspandas-awareness-day/

Guidelines For Treating PANS – It’s Real

http://med.stanford.edu/news/all-news/2017/11/margo-thienemann-on-an-alarming-childrens-psychiatric-disease.html  by Erin Digitale

5 Questions: Margo Thienemann on an alarming children’s psychiatric disease

Stanford clinicians helped develop the first clinical guidelines for treating pediatric acute-onset neuropsychiatric syndrome, a psychiatric problem linked to brain inflammation.

NOV 12017

Margo Thienemann

Margo Thienemann

For the last five years, a group of clinicians at the Stanford School of Medicine and at Lucile Packard Children’s Hospital Stanford have focused on what happens when the immune system attacks a child’s brain.

In Pediatric Acute-Onset Neuropsychiatric Syndrome, which is believed to stem from brain inflammation after a triggering infection, children suddenly develop severe obsessive-compulsive symptoms and other behavioral problems. They urgently need medical and psychiatric help. Yet many pediatricians and mental health professionals still lack awareness of how to treat the disorder.

To fill the gap, a multidisciplinary team of experts from several universities has published the first set of peer-reviewed treatment guidelines for PANS and its companion diagnosis, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, or PANDAS. Margo Thienemann, MD, clinical professor of psychiatry and behavioral sciences at Stanford, is the lead author of the portion of the guidelines that address psychiatric and behavioral interventions. Thienemann co-directs Packard Children’s PANS clinic, the first in the country exclusively devoted to the disease, with Jennifer Frankovich, MD, clinical associate professor of pediatric rheumatology.

Thienemann spoke with Erin Digitale about why the guidelines were needed and what else can be done to raise awareness of the condition.

Q. What do children and families affected by PANS/PANDAS experience?

Thienemann: Parents often describe children as turning into somebody completely different overnight. A child who was functioning just fine might suddenly feel like they had been “possessed” by something. They may be tearful and unable to separate from their parents. They may suddenly develop vocal or motor tics. The child may suddenly, after never having had appreciable obsessive-compulsive symptoms, engage in long periods of checking behaviors or cleaning behaviors, over and over. It suddenly takes hours to get out of the house or get the child to bed.

In addition to OCD symptoms, the other cardinal symptom is food refusal. Kids will suddenly be afraid to eat for fear they will choke, or fear that the food is poisoned, contaminated or spoiled. They may say food smells awful or express fear of vomiting. Again, this appears out of nowhere.

It’s like being hit by a train. Most often, the child will miss some school and at least one parent has to take a leave from work. It’s extremely anxiety-provoking because a normally functioning child suddenly can’t go to school, sleep, eat or be apart from parents, and is involved in rituals and tics. Another thing that’s very disruptive is trying to find someone who will provide medical and psychiatric care for your child. How do you find someone if providers say “I don’t believe in it” or “I don’t know how to treat this”?

Q. Why were the PANS/PANDAs treatment guidelines needed?

Thienemann: Right now, there isn’t enough solid, empirical evidence to say definitively “this is what you do” for these patients. For some aspects of treatment we have evidence, but overall we have to bridge the gap between our current clinical experience and knowledge, and the clinical studies. We are continuing to collect evidence, but many children will be identified with PANS/PANDAS before that work is complete. Physicians and other professionals need to know what to do for them now.

Also, despite the fact that we published diagnostic guidelines for PANS/PANDAS in 2015, I think some physicians still feel it’s not legit. We want physicians to take this disease seriously and, even more importantly, we really want them to treat it.

Q. What are some of the most important elements of the guidelines?

Thienemann: The treatment is at least tri-part. The main thrust of treatment is that if there is a triggering infection, we should treat the infection, and also treat close contacts who may be exposing the child to infection. We also have to treat inflammation, which is what we think causes the brain symptoms.

The psychiatric portion of the guidelines recognizes that the child and family are really suffering and the child needs psychiatric treatment to help with symptoms. We have to manage the child’s distress so they can get medical treatment, get blood drawn, get MRIs, take medications, so the family can sleep, and the child can sleep. We also need to help the family understand what might be going on, what they can anticipate from treatment, how to interact with each other and their child around the illness, and how to interact with the child’s school.

Unfortunately, a lot of the tools in psychiatry are medications — for OCD, depression, ADHD, tics — that don’t work the same way on an acutely inflamed nervous system as they would on garden-variety, idiopathic childhood mental illnesses. When medications are used, usually for residual symptoms, the guidelines suggest beginning with one-fourth of the typical starting dose of medication and increasing the dose very slowly. There can be complex interactions between medications, and between the medications and other changing variables related to where a child is in the illness and concomitant treatments. It makes treatment complicated.

Q. What are some of the gaps in how our health care system is set up to treat these children?

Thienemann: Unfortunately, we lack a good place to hospitalize these kids.

If we put them in a pediatric hospital when they’re unpredictably agitated or rageful, it doesn’t work. Pediatric hospitals are not set up for kids who may run out of the hospital or hit someone. Little sounds bother PANS/PANDAS patients, so the constant beeping of monitors doesn’t help, and lights bother them, so they don’t sleep in a hospital setting. It can be very difficult on hospital staff.

Psychiatric hospitals are also hard for these patients to tolerate. They have a brain inflammation problem, not a behavioral problem, so typical behavioral interventions aren’t helpful. And in psychiatric settings, parents don’t get to stay with their children. For many other pediatric psychiatric diagnoses, the parents may be a part of the problem, and some of the process of diagnosis is seeing how the child acts away from parents. But most children with PANS/PANDAS have terrible separation anxiety as part of their illness, and it’s very hard on them to be away from their parents. Psychiatric hospitals also are usually not comfortable working up an infection or giving intravenous treatment, which is required for some of the immune therapies used for this disease, so the children’s medical needs can’t always be met in a psychiatric setting.

Often, there is no place other than home to treat children with PANS/PANDAS, which can be really hard on the family. Ideally, for the future, I see a day when we have med-psych units for these patients in the same way that we now have excellent med-psych units for eating disorders. We would need hospital staff who specialize in addressing the psychiatric problems and family stress that go along with PANS/PANDAS, as well as people who can diagnose and treat the more traditional medical problems.

Q. What other changes do we need next for PANS/PANDAs patients?

Thienemann: Early identification. When someone comes to their doctor with sudden behavioral change, emotional change, suddenly has tics or suddenly stops eating, this disease should automatically be on the differential diagnosis. If we identify it early, it’s less complicated to treat and the patients have better outcomes.

https://madisonarealymesupportgroup.com/2011/09/25/the-bartonella-checklist-copyrighted-2011-james-schaller-md-version-11/

https://madisonarealymesupportgroup.com/2011/09/25/the-babesia-checklist-copyrighted-2011-james-schaller-md-mar-version-20/

For online support for parents with kids infected with Lyme/MSIDS:  https://groups.yahoo.com/neo/groups/lymeparents/info

 

Dr. Frid – Lyme, Parkinson’s & Autoimmunity

 Approx. 8 Min

Dr. Elena Frid is a guest medical contributor for AM 970 The Answer with Joe Piscopo. Today they discuss a possible link between Autoimmunity and Parkinson’s.  She mentions Lyme Disease being an infection of the brain and it’s relationship to other diseases.

_____________

For More:

https://madisonarealymesupportgroup.com/2017/10/01/panspandas-steroids-autoimmune-disease-lymemsids-the-need-for-medical-collaboration/   Boy’s Lyme Disease Morphs into Autoimmune encephalopathy. It took 10 years and 20 doctors to find out 12-year-old Patrik had Lyme disease. Just 4 months later the doctors discovered he also has a condition where his immune system attacks his brain.

https://madisonarealymesupportgroup.com/2016/04/10/bugs-causing-alzheimers/

https://madisonarealymesupportgroup.com/2017/09/21/aluminum-flawed-assumptions-fueling-autoimmune-disease-and-lyme/

https://madisonarealymesupportgroup.com/2017/09/26/silent-epidemic-of-early-onset-alzheimers/

https://madisonarealymesupportgroup.com/2016/06/03/borrelia-hiding-in-worms-causing-chronic-brain-diseases/

Today is PANS/PANDAS Awareness Day

https://www.facebook.com/pandasawarenessday/  October 9, 2017

The following article is just one example of how children are affected by a hard to diagnose complex illness called PANDAS or PANS.  Infections such as Lyme/MSIDS can trigger it and one prominent Wisconsin LLMD states that 80% of his PANS patients have it.  

http://www.charlotteobserver.com/news/local/community/lake-norman-mooresville/article172666411.html

carsonCarson Spears, 11, has PANS, a disorder where his body’s antibodies attack his brain instead of foreign pathogens. Homeopathic treatment has helped him, however. Kate Stevens

It started with strep throat. Then ‘it’s like your kid died but they’re still there’

BY KATE STEVENS

SEPTEMBER 11, 2017 3:16 PM

Carson Spears was just like the other pupils in kindergarten. The bubbly little boy loved to play outside and had plenty of friends.

Then, Carson came down with his first case of strep throat.

He didn’t respond to antibiotics and his sore throat and fever worsened, said Carson’s mother, Melissa Spears.

After changing antibiotics three times over a two-week period, Carson seemed to improve.

But on Sept. 24, 2011 — his mother remembers the date — the Spears family’s only son came downstairs a changed boy.

Carson had developed an unusual and noticeable eye tic seemingly overnight.

Her son’s eyes were traveling back and forth as if to the 10 and two position on a clock over and over, said Melissa Spears, 37.

By the time she returned home from work that afternoon, she counted Carson’s eyes tics at about 80 per minute, she said.

Cory Spears said his son’s obsessive tics reminded him of an android in a science-fiction movie.

“You ask him a question and he can’t compute,” Cory Spears recalled. “That’s what I relate it to. Everything reset.”

This initial symptom of uncontrollable eye tics began the Spears’ journey into learning about Pediatric Acute-onset Neuropsychiatric Syndrome, or PANS, a disorder resulting from an infection or environmental trigger causing abnormal activation of the immune system.

The Spears family of Mooresville has fought for the past six years to bring back Carson from this disorder that nearly robbed him of his personality.

“It’s like your kid died but they’re still there,” said Cory Spears, 39.

The Spears family hopes to educate others about PANS on Sept. 16 when they will participate in the PRAI for 100K 5K fundraiser at Marvin Ridge High School in Waxhaw.

The fundraiser is held by the Pediatric Research & Advocacy Initiative, or PRAI, a nonprofit organization whose mission is to find answers for children affected with neuroimmune disorders.

The disorders could affect as many as one in 200 children, most of whom are misdiagnosed or undiagnosed, according to PRAI statistics.

Awareness events like these fundraisers help educate people who may not have even heard of PANS and helps those diagnosed with PANS to realize there are others like them.

“The biggest thing that worries me about families with PANS kids is they think they’re alone,” said Cory Spears.

Carson’s eye tics were the first symptoms that eventually led to an unofficial diagnosis of PANDAS six years ago by his eye specialist.

Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, or PANDAS, is a subset of PANS and is linked to a recent streptococcal infection, according to PRAI.

“We are very, very, very fortunate that we had an unofficial diagnosis within 24 hours of onset symptoms,” said Melissa Spears. “Some parents go years.”

‘It hurts worse than average’

PANS is related to other bacterial or viral infections, including strep but other co-diseases, as well, Melissa Spears said.

Antibodies in a healthy person will attack a foreign antigen like a virus or bacteria once it enters the body to prevent illness, said Melissa Spears. For a person with PANS or PANDAS, the antibodies will instead attack the person’s brain instead of the foreign antigen, she said.

The inflammation of the brain can cause symptoms including terrible headaches, obsessive compulsive disorder, anxiety, sleep disturbances and aggression in children with PANS or PANDAS, Melissa Spears said.

When Carson has a “flare,” as the Spears family calls it, he says it feels like “his brain is on fire,” Melissa Spears said.

“It sort of feels worse than other people would think it would,” said Carson, now 11. “Other people are like, they’re thinking that I’ll be OK over time but it hurts worse than average.”

After Carson’s unofficial diagnosis in 2011, the family was left on its own to discover who could treat their son.

Meanwhile, Carson’s symptoms multiplied. He became withdrawn and began having issues focusing and completing tasks. He would leave lights on all over the house and leave cabinet doors open. He developed a life-changing fear of anything that flew, including insects and birds.

Carson developed severe separation anxiety from his parents and refused to go into a room alone or sleep in his own bed.

“He didn’t leave the house one summer,” Melissa Spears said.

Treatment trail

Over the next two years, the family took Carson to five doctors from Greensboro to Charlotte to Matthews where the Spears experienced backlash from physicians.

Doctors didn’t believe the disorder was real or thought Carson’s problems were psychiatric, said Melissa Spears.

The family spent $17,000 seeking medical answers the first year after Carson was diagnosed, Melissa Spears said.

After trying different medicines and going to local doctors “that didn’t listen to us as parents,” Melissa Spears turned to Dr. Rosario Trifiletti, a New Jersey neurologist who, at the time, was one of the few in the world who specialized in PANS/PANDAS cases.

During a phone appointment, Trifiletti listened to the Spears’ story and ordered lab work for all the family members, including Carson’s younger sister, Braxtynn.

Lab technicians took 17 vials of blood from Carson, then just 7 years old.

Trifiletti officially diagnosed Carson with PANS, not PANDAS, due to the active co-infections found in his blood work: mycoplasma, the bacteria that causes pneumonia; coxsackie — the virus causing Hand, Foot and Mouth disease; streptococcus, the bacteria causing strep throat; bartonella and babesia — a bacteria and parasite related to Lyme disease; and yeast, Melissa Spears said.

Instead of attacking these infections, Carson’s antibodies were instead going after his brain.

Carson began taking antibiotics daily for two years, as well as Tylenol and Ibuprofen, but his symptoms, although better, persisted. His parents began worrying how the treatment was affecting his already fragile body.

They decided something new had to be done.

‘Changed our lives’

At a crossroad, Melissa and Cory Spears could either commit to a $25,000 intravenous immunoglobin treatment commonly used for cancer patients to reset their immune systems or try integrative medicine and homeopathy.

The family found Dr. Angelica Lemke, a naturopathic doctor or ND, online.

After a 3 1/2 hour initial Skype consultation, Lemke asked for 30 days to see if her remedies would make a difference in their lives.

“My experience is that for the rapidly growing group of kids like Carson who have been diagnosed with PANS, and who often tend to have significant sensitivity, damage or imbalance in their immune system, homeopathy is a very excellent tool because it is specific enough to be tailored to each individual, gentle enough to not cause more harm than good, and when used correctly is particularly well-suited for improving or balancing children’s immune response to infections,” said Lemke through an email interview.

Three weeks in, Lemke’s treatment “changed our lives,” Cory Spears said.

Carson stopped waking in the middle of the night and he would actually go into a room alone, Melissa Spears said.

Instead of antibiotics, Melissa Spears picks from a number of paper packets containing nosodes, a diluted form of a disease used to treat that same disease.

Carson then drinks the nosode after it is dissolved in a small amount of water.

The nosodes teach the body to recognize the disease and then push it out, said Melissa Spears.

The family also diffuses essential oils and applies them topically to aid Carson’s immune system as well as purifies the air inside the home since toxins can make him sick. No one wear shoes inside the house to keep germs from getting inside.

Carson also avoids cow’s milk, which affects his ability to focus.

The homeopathic treatments have worked miracles and for that they are grateful.

“Our goal is to heal his immune system so that he will no longer have to battle this disorder on a daily basis,” said Melissa Spears.

The homeopathic treatments cost less than $500 annually, substantially less than some western medical treatments, the Spears family said.

A new Carson

The family feels they pretty much got Carson back about two and a half years ago, thanks to Lemke’s homeopathic treatments.

Today, Carson is a sixth-grade student in the gifted program at Mooresville Intermediate School.

He communicates his needs with his teachers and will work in the hallway quietly if he needs a break from the noisy group work that comes with some of his lessons, Melissa Spears said.

He enjoys playing Xbox, collecting and sorting his Pokemon trading cards and playing basketball with friends down the street, he said.

“Over the years it will get better if you have it,” said Carson. “I’ve gone through hard times with it and I’ve been healed from it. I hope other people are able to heal from it too.”

Kate Stevens is a freelance writer: katebethstevens@icloud.com

LEARN MORE
For information about PANS/PANDAS, please contact Melissa Spears at melissajspears@gmail.com or Cory Spears at coryaspears@gmail.com

____________________________________________________________________________________________

For more:  https://madisonarealymesupportgroup.com/2017/10/01/panspandas-steroids-autoimmune-disease-lymemsids-the-need-for-medical-collaboration/

https://madisonarealymesupportgroup.com/2017/10/08/misdiagnosed-how-children-with-treatable-medical-issues-are-mistakenly-labeled-as-mentally-ill/

https://madisonarealymesupportgroup.com/2017/06/30/child-with-lymemsidspans-told-by-doctors-she-made-it-all-up/

https://madisonarealymesupportgroup.com/2017/09/19/three-things-for-parents-to-watch-for-regarding-tbis/

https://madisonarealymesupportgroup.com/2017/09/05/when-lyme-isnt-caught-early/

Bartonella:  https://madisonarealymesupportgroup.com/2016/01/03/bartonella-treatment/

Babesia:  https://madisonarealymesupportgroup.com/2016/01/16/babesia-treatment/

Mycoplasma:  https://madisonarealymesupportgroup.com/2016/02/07/mycoplasma-treatment/

Viruses:  https://madisonarealymesupportgroup.com/2016/03/28/combating-viruses/

Some LLMD’s are using a treatment called LDA/LDI to treat immune dysfunction:  https://madisonarealymesupportgroup.com/2016/05/30/new-kids-on-the-block-ldaldi/  In short, it is transdermal injections every two months with substances that a person reacts to and can include anything from mold to dust, to Bartonella and Lyme.  The principle is somewhat like homeopathy as mentioned in the article.

 

Misdiagnosed: How Children With Treatable Medical Issues Are Mistakenly Labeled as Mentally Ill

https://www.huffingtonpost.com/entry/misdiagnosed-how-children-with-treatable-medical-issues_us_59d6b302e4b0705dc79aa68f by A. Elizabeth Washington, Writer, Advocate, Mother

Misdiagnosed: How Children With Treatable Medical Issues Are Mistakenly Labeled as Mentally Ill

10/05/2017 

In the fall of 2015, eleven-year-old Sophia Cahill* began blinking her eyes. Though an eye doctor dismissed the blinking as a symptom of dry eyes, her parents would look back later and realize the blinking was a tic. Sophia was otherwise healthy and unbothered by the blinking so life carried on as usual. The simple tic would unfortunately foreshadow much darker days to come.

As Sophia entered seventh grade the following year, she enjoyed spending time with friends and family, performed well academically, and excelled in several sports. She played softball and skied black-diamond slopes with ease. With a love of horseback riding, she had spent two weeks the prior summer at an overnight riding camp. Independent and responsible, she had flown alone across the country to see her cousins and was a trustworthy babysitter for her siblings. Sophia was happy and healthy, with a precocious sense of humor and an easygoing demeanor. Sophia’s parents, both medical doctors, had no concerns about her behavior or health that could have predicted that her life would soon be dramatically and abruptly turned upside down.

Shortly after the school year started, Sophia became sick with a virus and then pneumonia. The illnesses would have been easily forgotten were it not for the troubling episodes that began the following month. Out of the blue and generally in the evenings, Sophia would become extremely distressed and inconsolable, crying for hours at a time. In a state of extreme anguish, she’d rip up boxes of Kleenex, pound her fists on the bed, and repeat bizarre and senseless phrases. Her pupils would dilate and with sheer terror in her eyes and panic on her face, she would scream “Mommy! Mommy, help me!” but no amount of consoling could ease her suffering. Eventually, her hysterical sobbing was punctuated with the disturbing sight and sound of the usually calm twelve-year-old banging her head against the wall. By the wee hours of the morning, she would collapse from utter exhaustion and fall sleep.

The morning after each episode, Sophia would awake in good spirits showing no signs of the turmoil that had transpired the night before. A few nights would pass before another episode would occur. Gradually the episodes became more frequent and began lasting longer. Within three months, she had racked up a number of mental health diagnoses from several different doctors and had started an SSRI, yet her mental health continued to deteriorate.

Shortly after the New Year, the distressing symptoms that Sophia had exhibited only intermittently in the prior months turned into an around-the-clock nightmare for her and her family. With the addition of peculiar involuntary movements and constant moaning that would later be recognized as a vocal tic, Sophia was admitted into the hospital.

While hospitalized, her mother received a call from the pediatrician. The strep titers that she had asked the pediatrician to order were positive. This indicated that Sophia had likely had a fairly recent strep infection. Coupled with her dramatic neuropsychiatric deterioration, the pediatrician believed her mother’s suggestion that Sophia might have pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, commonly referred to as PANDAS, was likely accurate. She asked that Sophia’s mother discuss the possibility with the doctors at the hospital. Because Sophia also had a virus and pneumonia in the month before her symptoms began, pediatric acute-onset neuropsychiatric syndrome, or PANS, was also a consideration. PANDAS, a subset of PANS, requires documentation of previous strep infection. Diagnosis of PANS does not require identification of a specific trigger.

Sophia’s parents shared the labs and their suspicions with the hospital, but the attending physicians were adamant that Sophia did not have PANS. Relentlessly symptomatic, Sophia was transferred to an inpatient child and adolescent unit at another hospital with a diagnosis of anxiety. Here too, her symptoms continued to worsen and she developed an extreme startle response, jerking violently at the slightest sound. One week passed and high doses of anti-psychotics, beta-blockers, and other medications as well as additional investigation into medical causes produced no relief. Desperate for help, Sophia’s parents brought her back to the first hospital.

An MRI, EEG, and lumbar puncture provided no insight into what might be wrong and a neurologist reported she could find nothing amiss neurologically. After seeing another psychiatrist, Sophia picked up yet another diagnosis. This time her parents were told she had a conversion disorder and that they were to bring her home and behave as though nothing was wrong with her. With that, Sophia was discharged from the hospital.

At home, she continued to moan around the clock, jerked her arms uncontrollably, screamed hysterically, and was frequently catatonic. Frantic for answers, Sophia’s parents took her to yet another psychiatrist. This time she was diagnosed with a panic disorder, and though the psychiatrist admitted he honestly was not sure what was wrong with her, he prescribed two different anti-psychotics in an effort to stabilize her.

The attempt failed and by February, Sophia had refused to eat or drink for a full week. Treated for dehydration and released by the hospital, she was sent to an in-patient psychiatric facility. She was initially placed on an eating disorder unit and then moved to the OCD and anxiety unit. The two psychiatrists who evaluated her quickly encouraged her parents to have Sophia evaluated by a doctor who specialized in PANS and PANDAS. Sophia and her parents traveled out of state to see a specialist. With a virus and pneumonia preceding her initial neuropsychiatric symptoms, as well as positive streptococcus titers, the specialist confidently diagnosed Sophia with PANS and its subset PANDAS. Returning to the psychiatric facility with a proper diagnosis and treatment plan in place, Sophia was discharged.

Still suffering horrifically, Sophia tried to end her own life two days later. She was rushed back to the same hospital that had encouraged her parents to take her home and behave as though nothing was wrong the month before.

Now open to the possibility of PANS, hospital physicians agreed to treat her with intravenous immunoglobulin, or IVIG. Derived from the plasma of over a thousand donors, IVIG is used to treat a number of serious and life threatening medical conditions, including PANS. Sophia also underwent plasmapheresis, a procedure in which the plasma is separated from the blood cells, treated to remove auto-antibodies that may be attacking the body, and then returned to the body. Next she received Rituximab, a medication that halts autoimmune disorders by targeting and destroying B-cells, a type of blood cell responsible for antibody production

Though patients receiving these treatments often wait eight or more weeks for relief, Sophia was well enough to leave the hospital by the end of the month. Just as she was beginning to resume a few normal activities, pharyngitis caused relapse and she was readmitted to the hospital for an additional six weeks of aggressive immunomodulatory therapies, antibiotics, tonsillectomy and adenoidectomy. This time, the treatment would provide complete remission.

Four months after her final release from the hospital, Sophia is functioning just as well today as she had been prior to the onset of PANS. She is content, doing well academically, and on the school volleyball team. Surrounded by friends to celebrate her thirteenth birthday last month, Sophia showed no evidence of the year-long nightmare she had endured.

To understand how the physicians of a highly regarded hospital system could repeatedly misdiagnose Sophia, it is helpful to understand the history of PANS and PANDAS. National Institute of Mental Health researcher, Dr. Susan Swedo, first recognized what would come to be called PANDAS more than 25 years ago. While researching Sydenham’s chorea and obsessive-compulsive disorder (OCD), the mother of a patient with severe OCD and tics mentioned that her son had strep throat less than two weeks before his onset of symptoms. She had also noticed her older son’s tics would worsen a couple days before the start of a sore throat and positive strep test. As Dr. Swedo investigated further, she became aware that other infections also triggered OCD, tics, psychiatric issues, and behavioral problems in certain children.

Focusing early research on strep-triggered cases of obsessive-compulsive and tic disorders, Dr. Swedo published a paper in 1998 that provided clinical description of the first 50 children she had observed with PANDAS. All cases were characterized by an abrupt onset of OCD or tics following a strep infection. Many of the children also suffered from emotional lability, changes in school performance, personality changes, bedtime fears, separation anxiety, irritability, sensory defensiveness, impulsivity, distractibility, deterioration in handwriting and math skills, oppositional defiant behaviors, and nightmares (1).

A small handful of neurologists were swift to criticize the research. Quickly labeled as controversial, Dr. Swedo and other researchers would find themselves defending the concept of PANS for decades to come. Ruthless in their attack of PANS and PANDAS, several critics published a paper in 2012 in the Journal of Pediatrics titled “Moving From PANDAS to CANS (2).” Despite a large body of evidence to the contrary, they again called into question the scientific evidence for its existence. They also criticized the use of antibiotics to treat children with abrupt onset OCD and tics despite evidence that the health of many children with PANS was restored with antibiotic treatment.

After the paper was published, it was revealed that three of the authors, Dr. Roger Kurlan, Dr. Harvey Singer, and Dr. Donald Gilbert, failed to disclose that they had received financial support from the pharmaceutical company Psyadon (3). The company manufactures a medication for tics, providing a possible motive for their persistent criticism of the concept of PANS and use of inexpensive antibiotics to treat it.

Despite the frequent negative publicity, significant progress has been made in the understanding and treatment of PANS. In 2012, Lucile Packard Children’s Hospital at Stanford started a program treating children with PANS. In 2013, they hosted a conference with a number of experts from prestigious medical institutions and published a paper with clear diagnostic guidelines (4). In February 2015, an entire edition of the Journal of Child and Adolescent Psychopharmacology (5) was dedicated to PANS and PANDAS and in 2017, the same journal published three articles detailing full treatment guidelines (6). The articles were co-authored by an incredible team of experts like Dr. James Leckman, Professor of Child Psychiatry at Yale University, who served as the Director of Research for the Yale Child Study Center for more than twenty years; Dr. Mark Pasternack, infectious disease doctor and Associate Professor of Pediatrics at Harvard University; Dr. Jennifer Frankovich, PANS rheumatologist and Director of the PANS Program at Stanford; and more than two dozen other experts from prominent institutions.

Though experts consider the controversy to be resolved, the vast majority of pediatricians, child psychiatrists, and neurologists are unapprised of the latest research and continue to misdiagnose children who have PANS with any number of mental health disorders. The PANDAS Physician Network, an organization that educates medical professionals and sponsors research of the disorder, lists only one or two physicians who treat PANS in many states. Considering that by National Institute of Mental Health estimates, at least 350,000 children in the United States have PANS, the number of doctors who recognize and treat it is woefully inadequate to meet the needs of suffering children.

For now, many children with PANS continue to wait for the medical community to catch up to what experts have known for decades. We can only hope they’ll be as lucky as Sophia and receive proper medical attention before it’s too late.

 

*Name has been changed to protect privacy.

 

References

1. Swedo, Susan E., et al. “Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections: clinical description of the first 50 cases.” American Journal of Psychiatry 155.2 (1998): 264-271.

2. Singer, Harvey S., et al. “Moving from PANDAS to CANS.” The Journal of pediatrics 160.5 (2012): 725-731.

3. Singer, Harvey S., et al. “Moving from PANDAS to CANS.” The Journal of pediatrics 160.5 (2012): 725-731. (see correction)

4. Chang, Kiki, et al. “Clinical evaluation of youth with pediatric acute-onset neuropsychiatric syndrome (PANS): Recommendations from the 2013 PANS Consensus Conference.” Journal of Child and Adolescent Psychopharmacology 25.1 (2015): 3-13.

5. Chang, Kiki, Harold S. Koplewicz, and Ron Steingard. “Special issue on pediatric acute-onset neuropsychiatric syndrome.” Journal of child and adolescent psychopharmacology 25.1 (2015): 1-2.

PANS/PANDAS, Steroids, Autoimmune Disease, Lyme/MSIDS, & the Need For Medical Collaboration

http://www.neurosciencechicago.com/pans-and-pandas-in-pediatric-diagnostics/  The Neuroscience Center

PANS and PANDAS in Pediatric Diagnostics

PANS is a relatively new term used to describe acute-onset OCD cases. PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome and includes all cases of abrupt onset OCD, not just those associated with streptococcal infections. PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.

PANS & PANDAS is used to describe the group of children and adolescents who have sudden onset of Obsessive Compulsive Disorder (OCD) and/or tic disorders, and in whom symptoms worsen following conditions such as streptococcal infection (Strep throat & Scarlet Fever), influenza, chickenpox, Lyme disease, and mycoplasma (which causes so-called walking pneumonia). The illness can become a psychiatric emergency within 48 hours, and should be treated by a Pediatrician (or other primary care physician) along with a Psychiatrist.

Currently, the illness is conceptualized as an example of mis-directed immune attack, and might occur because of a kind of similarity between antigens on the viral or bacterial agent and childs own cells – so the body begins to attack itself.

Both PANS and PANDAS are clinical diagnoses. They are made by a physician after clinical evaluation. The history must reveal an abrupt onset of OCD and/or tics (or sudden, dramatic worsening if the child had pre-existing OCD or tics). Laboratory testing will not confirm or negate the diagnosis. Testing can suggest different routes of acute and/or long-term treatment – relevant tests include anti-streptococcal antibody titers, anti-nuclear antibody titers, and a test of immune reactivity, such as an erythrocyte sedimentation rate (ESR) or C-reactive protein.

The primary care physician will likely prescribe antibiotics, nutritional support, and perhaps steroids. Sometimes, IVIG (immunoglobulins administered by IV) or plasmapheresis (a way of purifying blood and then replacing it into the patient). Hyperbaric Oxygen Therapy is occasionally useful to restore physiologic resilience and aid in stabilizing immune dysfunction. Psychiatric care will likely include traditional anti-OCD interventions such as medication.

____________________________________________________________________________________________

Great, concise information.  A warning; however, about steroids if pathogens are involved as certain steroids (catabolic) can suppress the immune system, allowing infection to proliferate and worsen.  This has happened to many a Lyme/MSIDS patient when they were misdiagnosed initially with things like fibromyalgia, MS, and other autoimmune conditions and given catabolic steroids such as prednisone or cortisone.  https://www.verywell.com/anabolic-steroids-corticosteroids-difference-190456

Not all steroids do this and it’s important not to take a broad brush stroke condemning all when some actually build the body up (anabolic) as well as the fact patients may even require small doses of catabolic steroids such as cortisol if they aren’t making enough.  Blood tests are often used along with a clinical diagnosis to determine these imbalances. http://www.hormone.org/diseases-andconditions/adrenal/adrenal-insufficiency

So type of steroid is important as well as dose.

Nothing’s ever simple, is it?

And to confuse things even more

                  HLN, Published 2012, Approx. 8 min.

What if an apparently normal, intelligent and productive person suddenly became psychotic, violent and unstable? Susannah Cahalan, tells her frightening story in the book Brain on Fire: My Month of Madness.

In this case, Cahalan was finally diagnosed after the doctor had her draw a clock, a common test for Alzheimer’s patients.  When she drew it, all the numbers were on the right side, demonstrating that the right side of her brain was not functioning as well as the fact her problem was neurological not psychiatric.  She was found to have autoimmune encephalitis and the treatment is very high doses of steroids which suppress the immune system as well as IVIG, a blood product prepared from the serum of between 1,000 and 15,000 donors https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1809480/, and plasmapherisis, a plasma exchange to rid the body of abnormal antibodies http://plasmapheresis.net.

  Her doctor, then Staten Island surgeon, Dr. Najjar, speaks here about the professional isolation he felt due to the lack of collaboration between the disciplines of psychiatry and neurology.

This problem also exists for Lyme/MSIDS and must change.

 Boy’s Lyme Disease Morphs into Autoimmune encephalopathy.  It took 10 years and 20 doctors to find out 12-year-old Patrik had Lyme disease. Just 4 months later the doctors discovered he also has a condition where his immune system attacks his brain.  Dr. Souhel Najjar, Cahalan’s doctor, heroically saves the day again.

  (Trailer  here)  Zero Media  Published 2017.

These stories are critical to share and with today’s technology we can do this easily.  Please pass this on to every parent you know as it may save another life.

For more on psychiatric Lyme/MSIDS: https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/

https://madisonarealymesupportgroup.com/2017/01/17/lymemsids-and-psychiatric-illness/

https://madisonarealymesupportgroup.com/2017/07/26/can-lyme-steal-your-mind/