Archive for the ‘PANS’ Category

Associations Between COVID-19, PANS/PANDAS, and Biotoxin Illness

The interconnections between COVID-19, PANS/PANDAS, & biotoxin illness

Dr. Jodie Dashore discusses possible associations between COVID-19 and PANS/PANDAS as well as biotoxin illness, from what we know so far, and ways to strengthen oneself in the face of all these conditions. Dr. Dashore has a wide spectrum of plant-based therapy options for chronic disease, and particularly sees patients with autism, PANS/PANDAS, mould illness and Lyme Disease. She also answered questions live during the webinar.

For more:  https://madisonarealymesupportgroup.com/2019/01/27/pans-pandas-autoimmune-encephalitis-rickert-hong/

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

https://madisonarealymesupportgroup.com/2018/12/17/my-kid-is-not-crazy-study-shows-1-3-kids-with-pans-have-hallucinations/

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

https://madisonarealymesupportgroup.com/2018/07/28/stories-of-pandas/

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

https://madisonarealymesupportgroup.com/2018/11/06/diagnosing-treating-autoimmune-encephalitis-in-patients-with-persistent-lyme-symptoms/

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.

Study Links Eating Disorders to Childhood Infections (Lyme/MSIDS Can Do This)

https://giving.massgeneral.org/eating-disorders/

New data from a Mass General researcher highlights a link between the immune system and the onset of eating disorders.

The question of what causes eating disorders has puzzled the medical community since “wasting disease” was first described in the 17th century. Today, researchers and clinicians agree that, in addition to psychosocial and environmental risk factors, there is a strong biological basis to these disorders. Now, new data from a Massachusetts General Hospital researcher suggests that exposure to common childhood infections, such as strep throat or bronchitis, may significantly raise a person’s risk of developing anorexia nervosa, bulimia nervosa and other eating disorders.

“Infections, by and large, have typical behaviors associated with them, and among those most commonly reported is loss of appetite.”

Results of the population-based study, published in JAMA Psychiatry, found that infections that required hospitalization or treatment with anti-infective medications, such as antibiotics, antifungals or antivirals, increased the risk of developing an eating disorder by as much as 39%. The multi-institutional study, which analyzed the health histories of more than 500,000 adolescent girls in Denmark, also found that recurrent infections and repeated treatment increased the risk.

Infections and Behavior

“Infections and inflammation more broadly have been recognized to play a role in psychiatric diseases like schizophrenia, but this has been less explored in eating disorders,” says Lauren Breithaupt, PhD, a clinical psychologist in the Mass General Eating Disorder Clinical and Research Program, and lead author of the study. “We’re hoping that a better understanding of the relationship between the immune system and disordered eating will help identify a mechanism behind the increased risk and biochemical changes we see happening.”

Lauren Breithaupt, PhD
Lauren Breithaupt, PhD

As an observational study, the findings don’t point to a single cause or effect, but one possible explanation, according to Dr. Breithaupt, is that the infection or treatment of the infection disrupts the gut microbiome, which in turn alters the brain’s neurobiological reward system. Another possibility is the body’s own inflammatory response. Inflammatory proteins have been shown to cause changes in behavior, such as loss of appetite.

“Infections, by and large, have typical behaviors associated with them, and among those most commonly reported is loss of appetite,” Dr. Breithaupt says. “If you’re already at risk for an eating disorder, this period of no appetite could have a priming effect.” Although more research is needed, Dr. Breithaupt is encouraged the findings further enforce the biological nature of the disease.

Eating Disorder Stereotype

Eating disorders have long been seen as social constructs — think of the stereotype of the wealthy white girl who isn’t eating because she wants to look a certain way,” says Dr. Breithaupt. “It’s taken a lot of evidence — more than most other mental illnesses — to blow that stereotype out of the water. We now know that the rates are similar across the world and across cultures. We’re even seeing that there may not be as big a gender discrepancy as we previously thought.”

Despite mounting biological evidence, there is still a great deal of confusion in the medical community about how to diagnose and treat eating disorders. Dr. Breithaupt is hopeful that the team’s findings can lead to increased awareness of the signs and symptoms and that more hospitals and treatment centers adopt a more scientific approach to treating these diseases.

The Role of Philanthropy

“The Eating Disorders Clinical and Research Program at Mass General offers gold standard evidence-based treatment for eating disorders, but we receive so many referrals per year that unfortunately we can’t treat every patient who seeks services,” she says. “That’s why philanthropy is so important to the growth of our program. The work that we do is often funded by individuals and families who have been touched by these diseases.”

The other key to advancing the understanding and treatment of eating disorders, Dr. Breithaupt says, is education.

“In order to identify biological markers, we need larger sample sizes and data sets, which requires individuals with the disorder to come forward and to participate in research,” she says. “By educating the public about the biology underlying eating disorders, we can break down barriers and overcome the stigma.

To learn more about how you can support eating disorder programs and research at Mass General, please contact us.

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**Comment**

Great read and a fantastic reminder that eating disorders often have a biological basis.

If a wild animal is sick with an infection it stops eating. This begins to make sense when we understand that nearly 5-15% of our body’s energy goes into digestion:  http://discovermagazine.com/2009/dec/20-things-you-didnt-know-about-digestion

According to Dr. Bransfield eating disorders are common with Lyme/MSIDS:  https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/

In addition, Lyme can trigger a condition known as pediatric acute-onset neuropsychiatric syndrome (PANS) which in turn can also cause eating disorders. http://www.childrenslymenetwork.org/children-pans-pandas/  PANS, similarly to Lyme, still has not been accepted by mainstream medicine despite thousands upon thousands suffering from both.

For more on PANS:  https://madisonarealymesupportgroup.com/2017/12/01/guidelines-for-treating-pans-its-real/ In short, treat the infection(s), inflammation, and deal with the psychiatric issues.

Hypoglycemia can also be a player. And according to this article, insulin resistance “causes the body to have problems metabolizing carbohydrates into biological energy called ATP. This energy is essential in the production of feel good neurotransmitters such as serotonin. Thus without that energy the person may tend to feel depressed. The unabsorbed carbohydrates are converted to, first, glycogen and then into fat cells. Thus we find that depressed people may be overweight AND depressed. They are not depressed because of obesity, but because of insulin resistance!! (MedicalNewsToday 8 Oct 2009) See also Hemat.”  http://www.hypoglycemia.asn.au/2011/eating-disorders-anorexia-and-bulimia/

The article has great advice if you suspect hypoglycemia is your issue:

“If you suspect that an eating disorder is related to insulin resistance (a pre-diabetic condition called hypoglycemia) then have this tested by a doctor. See How to test for hypoglycemia. If found to be positive, encourage your client to adopt the Hypoglycemic Diet.

For most people sticking to a regime of frequent snacks of high proteins (every 2 ½ hours), plus various vitamins and mineral – so as never to feel hungry – should supply sufficient energy from proteins to produce feel good neurotransmitters such as serotonin. This together with regular – but not excessive –  exercises should prevent unabsorbed carbohydrates from being converted to fat cells! But keep in mind possible allergies and food sensitivities that may affect the digestive system.”

I knew a patient who was not over weight at all but due to severe hypoglycemia and hypothyroidism they developed eating disorders. When they adopted the hypoglycemic diet and began supplementing with natural thyroid hormone the eating disorders disappeared.
Please spread the word as many doctors will only continue to look at this as a psychiatric problem when there are often biological causes.

Psychosis and PANS Meet Plasmapheresis – Our Final Slam Dunk

https://pandamoniumblog.com/psychosis-and-pans-meet-plasmapheresis/

Psychosis and PANS meet Plasmapheresis – Our Final Slam Dunk

PANS and PANDAS often mimic mental illness, presenting as psychosis. The day after Aidan’s worst night in the psychiatric hospital three years ago, he sat in the corner of the hallway picking at his red hospital socks and said to his nurse, Ms. English,

“Nobody knows how I feel.”

Our son, Aidan, was psychotic – there, I said it. Nurse English was the one psyche nurse with whom Aidan connected. She was ultra compassionate and took the time to meet Aidan where he was – in the corner, in the hallway, on the floor. Picking, picking, picking at his one-size-too-big, floppy hospital socks – the ones with the no-slip bottoms. Interestingly enough, he still has those socks tucked away in his top dresser drawer. I think they were the highlight of his stay.

Yes, I saw it with my own eyes. Aidan was psychotic because of PANS. Pyschotic because of a illness that was almost diagnosed during his inpatient stay in 2016.

Unlike many children diagnosed with PANS or PANDAS, Aidan’s onset was not overnight; I believe that he had a misdirected immune system from infancy. However, I can recall what illness in what month of what year and how many weeks after he ‘recovered’ from that illness when we noticed increased rages and aggression, decreased motor skills and an onset of tics. In short, the bottom fell out. We did not know what to do or where to go.

We ended up in a pediatric psyche ward and came out with more diagnoses: a movement disorder for the tics and imbalance, and a second-time mood disorder NOS (not otherwise specified) for the rages, aggression and psychosis. He was also labeled a fall risk (rightfully so) and was emotionally liable upon discharge.

Game Changer #1: Proper Diagnosis

Three weeks after Aidan’s discharge from the hospital, he had an appointment with the developmental pediatrician who diagnosed him with autism. It was a follow-up appointment that was scheduled one year prior.

The exam room had a mat on the floor, and for that I was thankful. All Aidan had done since coming home from the hospital was roll around on the floor, from one side of the family room to the other.

I remember saying to the doctor, “Is this Aidan with autism but on different medications?” I explained life since the bottom fell out until now, looking up from the mat where I was trying to keep Aidan somewhat calm. I wasn’t very successful, nor was I ready for what the doctor had to say:

“This isn’t autism, Mrs. Keatts. This is PANDAS or PANS, and the most successful treatments are not covered by medical insurance.”

By the end of this appointment, my head was spinning. Aidan had been seen by more than 10 doctors during his inpateint stay, and at an appointment that I made one year prior for an unrelated diagnosis, we discover the root cause of Aidan’s symptoms that were holding him hostage in his own body.

Game Changer #2: Proper Intervention

If and when our children are properly diagnosed and a proper treatment plan is implemented, parents and doctors try to counter PANS and PANDAS with antibiotics, anti-inflamatories, steroids, supplements, IVIG and antibody therapy. Sometimes, one of these interventions or a combination thereof provides long-term relief. For us, however, they did not.

Our last resort was plasmapheresis, which in its simplest terms is a way to cleanse the blood system of the antibodies that are attacking our children’s brains. This is how I can best explain how plasmapheresis works:

  1. Blood has three parts: plasma, red cells and white cells. Antibodies are found in the plasma part of the blood.
  2. Plasmapheresis takes blood from the strongest source, the heart, and separates the plasma from the red and white blood cells.
  3. The red and white bloods cells are stored together and kept safe during the treatment, while the old plasma is collected separately and disposed of later.
  4. Then the red and white blood cells are put back into the blood stream with the new donor plasma.
  5. Plasmapheresis therapy takes place over the course of two weeks – three days each week, with at least one day in between each session.

Some kids, like Aidan, respond immediately to plasmapheresis – also called PEX. Others, progress slowly over weeks, even months. And still others require additional treatment modalities ranging from IVIG to cognitive behavioral therapy and intensive exposure therapy to further recover from the damage done by a misdirected immune system.

Regardless of the pace at which the child progresses following PEX, for many children this ‘blood cleaning’ process opens the pathway to healing and recovery.

On the Rebound

We are coming up on the two-year anniversary of Aidan’s plasmapheresis treatments, and since then I have spoken to several moms before their child began PEX. While their children’s onset stories and symptoms vary, one constant prevails — each mom is understandably apprehensive about plasmapheresis. It is invasive – a surgery is required to place a port into the aorta, and there is risk of infection.

Every time I share our experience with plasmapheresis, I speak from my heart. PEX opened a door to Aidan’s healing that I truly thought we would never find. In complete transparency, Aidan’s illness tested my faith far beyond any other struggle in my life.

Nearly two years later, I realize that there are four intentions that I subcouncioulsy set, yet mindfully observed during Aidan’s PEX. When I fully saw how the Divine’s healing hand was there all along, I gained clarity that is unique to Aidan’s journey. And so, I share with you my insights with a heart not only of gratidude for Aidan’s healing, but a fierce hope that your child will too find healing.

  • Be brave. Your child and family have gone through hell and back because of PANS or PANDAS. You are all warriors in your own right. You have been courageous and resilient from the beginning – even if you have fallen apart and cried yourself to sleep more times than you can count. You made it to this point, and that’s what matters.
  • Be bold. Let your spirit lead you. Let your worries drift away. Believe that your child will heal, and that healing begins this day. Sacrifice and intention preempt healing. Your child and your family have sacrificed much and suffered terribly. Now, set your intention. A mindset of clarity and healing is the next step. Each day leading up to the procedure claim your intention – to heal your child.
  • Be open. Your child will be just as anxious and afraid as you are, yet neither of you will tell the other. You have both learned how to be stoic throughout this journey. I welcome you to share Aidan’s story with your child and explain that other kids with PANS / PANDAS have begun to heal after the ‘bad guys’ were removed from their bodies.
  • Be watchful. Sometimes healing begins almost immediately. Other times it progresses slowly. Every child is different, and every story of healing is unique. The smallest signs of healing are blessings and are meant to encourage hope. Although Aidan’s signs of healings began just one day after his first plasmapheresis treatment, his full path to remission lasted more than a year. Healing occurs in stages as the body is able to respond and process various interventions. Be patient, and remain watchful.

After years of flagrant fouls and air balls in our journey to heal Aidan, PEX allowed us to score the winning shot in a game that ran into overtime for years. Reflecting on my fears, frustrations, desperation, and even my loss of faith, I now see twists and turns in Aidan’s illness through a new lens – a courtside view of Nurse English rebounding the ball for Aidan during open play in the hospital gymnasium, and a box seat view of the Divine palming the ball, guiding my next pivot and lifting us up for the final slam dunk.

MJ Keatts is a mom of three – one of whom inspired her to start this blog. A journalist by trade, minimalist at heart, and a stunt girl in her dreams, MJ proudly admits that she’s learned more from her kids and husband than she could ever teach them herself. She loves to laugh – especially at herself – and one day hopes to amaze her husband and be ready on time.

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**Comment**

Click on the author’s name at beginning of article for other articles she’s written.

For more:  https://madisonarealymesupportgroup.com/2019/03/16/brain-under-attack-pans-pandas-related-developmental-disorders/

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/2017/12/01/guidelines-for-treating-pans-its-real/

https://madisonarealymesupportgroup.com/2018/10/29/neuropsych-disorders-in-kids-an-interview-with-co-founder-of-the-stanford-pans-clinic-dr-kiki-chang/

https://madisonarealymesupportgroup.com/2018/09/05/pans-autism-the-immune-system-an-interview-with-expert-neurologist-dr-richard-frye/

https://madisonarealymesupportgroup.com/2019/01/02/pans-pandas-a-survivors-story/

FYI: Lyme/MSIDS can often be a part of the PANS/PANDAS picture.

One Family’s Story of Strep, Lyme Disease, and PANS/PANDAS

One family’s story of strep, Lyme disease, and PANS/PANDAS

Abstract: Bartonella in Boy with PANS

https://journals.sagepub.com/doi/full/10.1177/1179573519832014

Bartonella henselae Bloodstream Infection in a Boy With Pediatric Acute-Onset Neuropsychiatric Syndrome

First Published March 18, 2019 Case Report

In March 2017, Bartonella spp. serology (indirect fluorescent antibody assays) and polymerase chain reaction (PCR) amplification, DNA sequencing, and Bartonella enrichment blood culture were used on a research basis to assess Bartonella spp. exposure and bloodstream infection, respectively. PCR assays targeting other vector-borne infections were performed to assess potential co-infections.

For 18 months, the boy remained psychotic despite 4 hospitalizations, therapeutic trials involving multiple psychiatric medication combinations, and immunosuppressive treatment for autoimmune encephalitis. Neurobartonellosis was diagnosed after cutaneous lesions developed. Subsequently, despite nearly 2 consecutive months of doxycycline administration, Bartonella henselae DNA was PCR amplified and sequenced from the patient’s blood, and from Bartonella alphaproteobacteria growth medium enrichment blood cultures. B henselae serology was negative. During treatment with combination antimicrobial chemotherapy, he experienced a gradual progressive decrease in neuropsychiatric symptoms, cessation of psychiatric drugs, resolution of Bartonella-associated cutaneous lesions, and a return to all pre-illness activities.

 

Please note that this boy would be in a psych ward if not treated with antimicrobials for Bartonella.