Archive for the ‘PANS’ Category

What is PANS/PANDAS? And Why Are Cases On The Rise?

https://www.linkedin.com/pulse/what-panspandas-why-cases-rise-jill-c-carnahan-md/

What Is PANS/PANDAS? And Why Are Cases on the Rise?

Jill C. Carnahan, MD
Jill C. Carnahan, MD
Founder, Medical Director, Flatiron Functional Medicine

Imagine a loving child who’s been hitting all of their developmentary milestones. Then, seemingly overnight, she becomes so aggressive and full of rage that she’s kicked out of her preschool.

Or, a high-achieving, straight-A middle school student that suddenly begins having difficulty concentrating or even remembering what he learned the day before.

Or, how about a bubbly and social teenager that has a complete personality change and can no longer leave the house due to severe anxiety.

Unfortunately, for a growing number of parents, these frightening and heartbreaking scenarios have become their reality. More and more children are being diagnosed with autoinflammatory neurological disorders known as PANS and/or PANDAS. Today, we’re going to dive into exactly what PANS/PANDAS is, why cases are on the rise, and what you can do to minimize your own child’s risk of developing these disorders.

What is PANS?

PANS and PANDAS are both related autoimmune conditions that disrupt children’s neurological function. PANS is an acronym for Pediatric Acute-onset Neuropsychiatric Syndrome. PANS is a broad classification and can be caused by nearly any infection. Some more common infectious agents that have been linked to PANS includes:1

  • Mycoplasma pneumonia
  • Influenza (the flu)
  • Epstein Barr (Mono)
  • Borrelia Burgdorferi (Lyme disease)
  • Varicella (Chickenpox)
  • Herpes simplex
But any infection that triggers an immune response can potentially cause PANS.

What is PANDAS?

PANS also encompasses the more well-known subset of this disorder known as PANDAS. PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection.2 As the name implies, PANDAS is triggered by a streptococcal (strep) infection.

PAN and PANDAS are grouped together because PANDAS is considered a subset of PANS – with both conditions causing severe neurological symptoms. Let’s take a look at exactly what these oftentimes alarming and scary symptoms can look like.

What Are the Symptoms of PANS/PANDAS?

PANS and PANDAS cause a sudden, and rapid-onset onset of neurological symptoms – meaning symptoms involving the brain, spinal cord, and all nerves throughout the body. PANS and PANDAS affect children, typically anywhere from age three through puberty. Seemingly overnight, children can present with symptoms including:3

  • Obsessive-compulsive thoughts: the inability to put thoughts out of their mind or a strong urge to perform repetitive actions.
  • Tics or purposeless motor movements: this may be uncontrolled repetitive symptoms such as jerky movements, sounds (like grunts), or repeating words over and over.
  • Mood changes and mood swings: this can include irritability and moodiness as well as inappropriate emotional responses such as laughing or crying unexpectedly.
  • ADHD type symptoms: such as difficulty concentrating, fidgeting, inability to sit still, and hyperactivity.
  • Separation anxiety: severe “clinginess” or difficulty being separated from parents or caregivers.
  • Changes in motor skills: often this is seen as a sudden acute difficulty with handwriting and other fine motor skills.
  • Sleep problems: children may have difficulty falling or staying asleep.
  • Increased urination: this can manifest as night-time bedwetting, an increase in urination frequency during the day, or both.

These symptoms are almost always abrupt and dramatic – causing children to change almost overnight and out of the blue. But how exactly does PANS/PANDAS cause these sudden and frightening changes in children?

What Causes PANS/PANDAS?

PANS/PANDAS is directly caused by an infection, either streptococcal or otherwise. Regardless of the infectious agent, the process goes something like this:3,4

  • Step 1: Your child comes into contact with an infectious agent and an infection is contracted. Streptococcal bacteria and other infectious microorganisms have evolved to survive in the human body by evading our immune systems for as long as possible. These microbes essentially “hideout” in your child’s body – putting specific molecules on their cell walls that are nearly identical to the molecules found on your child’s own tissues. This is called “molecular mimicry” and helps these foreign invaders evade detection so they can begin replicating.
  • Step 2: Eventually the immune system is alerted to these foreign invaders and an attack is launched in an attempt to neutralize the threat. But because these foreign microbes closely resemble the host cells, the immune system begins mistakenly attacking the invading microorganisms and the healthy cells that were mimicked.
  • Step 3: In PANS/PANDAS, the immune system begins targeting a part of the brain known as the basal ganglia. The basal ganglia is responsible for motor functions and learning as well as behaviors and emotions.5 So, as the immune system launches its misguided attack on the basal ganglia, inflammation levels skyrocket – causing a rapid and severe onset of neurological symptoms.

So what are the next steps if your child presents with the intense and debilitating symptoms seen in PANS/PANDAS?

Is There Treatment for PANS/PANDAS?

Unfortunately, because PANS/PANDAS manifests as neuropsychiatric issues, cases are often misdiagnosed as behavioral disorders or mental illness – oftentimes resulting in children being placed on psychiatric meds. But when properly diagnosed, treatment of PANS/PANDAS requires addressing the root cause of the symptoms – the underlying infection and subsequent inflammation and autoimmune response.

Typically PANS/PANDAS is treated with anti-infective and/or immunological treatments. Anti-infectives target the underlying infection, and immunological treatments target the immune system. Treatment may resolve symptoms, but in some cases, symptoms may only be diminished – leaving children with ongoing neuropsychiatric issues. This often requires cognitive-behavioral therapies to manage lingering symptoms. 

Undoubtedly, as a parent, the thought of your child potentially contracting PANS/PANDAS and dealing with the life-altering effects of these disorders is extremely concerning. And what’s more concerning, is that cases of PANS/PANDAS are on the rise.

Why Are PAN/PANDAS Cases Are on the Rise?

Exposure to germs and the contraction of infections are inevitable in children. In fact, this activation of the immune system is a crucial part of development and building acquired immunity. But the problem arises when exposure to these infectious agents causes the immune system to go awry.

You see, modern life has a major impact on both children’s and adult’s immune systems. Certain factors can increase the likelihood of a child’s immune system misfiring and causing autoinflammatory conditions such as PANS/PANDAS. Factors that negatively impact the immune system and increase the risk of autoimmunity include:

  • Increased exposure to toxins and inability to properly detox
  • Gut dysbiosis and nutritional deficiencies
  • Increased stress levels and inadequate sleep

Let’s take a deeper look at how addressing these factors and prioritizing immune health can decrease your child’s risk of developing autoinflammatory disorders like PANS/PANDAS.

Ways to Support Your Child’s Immune System

While there are certainly no guarantees when it comes to your child’s health, the most powerful weapon we have against autoinflammatory disorders is keeping the immune system in tip-top shape. Some of the best ways you can keep your child’s immune system firing on all cylinders include:

Reducing Toxic Burden

We’re all exposed to countless potentially harmful toxins on a daily basis. Our bodies are designed to process out these toxins and maintain homeostasis. But when exposure to toxins overwhelms the body’s ability to properly detox and they begin to accumulate, it can spell trouble.

You see, a build-up of toxins activates your child’s immune system, causing low-level inflammation. Over time, this constant activation overworks the immune system. This not only depletes your child’s immune system’s resources – leaving it with less energy to direct at potential threats – but can also increase the chances of their immune system misfiring and the development of autoinflammatory conditions.

While it’s impossible to entirely avoid exposure to toxins, there are some simple steps you can take to make your child’s environment less toxic and reduce their overall toxic burden. Head over to my article How to Boost Your Immune System by Reducing Your Toxic Burden to learn exactly how you can start addressing the toxin levels in your home today.

Focusing on Gut Health

The immune system and the gut are intricately linked. In fact, the gut houses approximately 70% of your immune cells and plays an integral role in coordinating and regulating immune responses. So it’s no surprise that if gut health is out of whack, then the immune system can’t function properly.

There are two primary components to keeping your gut – and subsequently your immune system – happy and healthy:

  1. The integrity of the lining of your gut: Your child’s digestive tract is frequently exposed to foreign pathogens through the food and drinks they ingest. The lining of the gut is designed to keep these potentially dangerous microorganisms sealed up tight so they can be safely eliminated.
  2. The microbiome: Millions of different beneficial microorganisms reside in your child’s gut. This delicate ecosystem plays a crucial role in communicating with the immune system, keeping “bad” bacteria in check, and producing essential metabolic compounds.

Supporting both of these components of gut health is pivotal when it comes to supporting immune function. Some simple ways to help keep your child’s gut healthy and happy include:

  • Build meals around real whole foods. Teach your children to fill up on fresh fruits and veggies, high-quality protein, and healthy fats.
  • Minimize sugary foods and simple carbs. Sugar-laden and processed foods can cause an imbalanced microbiome and increase inflammation.
  • Introduce beneficial bacteria by incorporating fermented foods like sauerkraut, coconut yogurt, kombucha, and kefir. Or try a kid-friendly probiotic – just make sure to consult with your pediatrician first.

To learn more about how a healthy gut equals a stronger immune system, head over to my article How to Heal Your Gut for a Stronger Immune System.

Prioritizing Rest and Relaxation

With schoolwork, standardized tests, sports, and extracurricular activities, kids today have a lot of stress and seem to be constantly on the go. And that stress can put a serious damper on their immune systems.

Teaching your kids to balance activities and achievements with rest, fun, and connecting with others is crucial to their overall health. Help them find ways to channel and process the unavoidable stress with things like journaling or meditation. Keeping stress levels in check is one of the most powerful ways to support your child’s immune function.

So, How Worried Should I Be About PANS/PANDAS?

As a parent, you love your children and the thought of them developing PANS/PANDAS feels like a nightmare that you never want them to go through. That’s why staying informed and supporting your children’s immune systems is crucial.

If you’re concerned that your child may be suffering from the effects of either of these debilitating disorders, I strongly encourage you to seek the expertise of an experienced Integrative and Functional Medicine Practitioner. If you’ve never worked with an Integrative and Functional Medicine Practitioner, click here to learn how to pick the right one for your family.

When it comes to the health of your family and bolstering your child’s defenses against autoinflammatory disorders like PANS/PANDAS, you are your child’s best advocate. Staying educated, creating a healthy lifestyle for your family, and teaching your children to prioritize their own health is a powerful way to minimize the risk of developing autoimmunity.

And I’m here to help you. I’m dedicated to bringing my patients and readers the knowledge and resources they need to stay educated and feel empowered. So if you want access to my exclusive and very best tips when it comes to staying healthy, I encourage you to sign up for my newsletter. All you have to do is enter your name and email in the form below and you’ll get all my best content delivered straight to your inbox!

If you’d like to read more on PAN/PANDAS you may also want to read blog articles like these by my friend, Dr. Suzanne Gazda, Integrative Neurologist.

References

  1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340805/
  2. https://www.pandasppn.org/what-are-pans-pandas/
  3. https://www.nimh.nih.gov/health/publications/pandas/index.shtml
  4. https://www.moleculeralabs.com/pans-and-pandas-overview/
  5. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3543080/

* These statements have not been evaluated by the Food and Drug Administration. The product mentioned in this article are not intended to diagnose, treat, cure, or prevent any disease. The information in this article is not intended to replace any recommendations or relationship with your physician. Please review references sited at end of article for scientific support of any claims made.

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For more:  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/2020/03/24/is-your-child-crazy-or-sick-mental-illness-vs-medical-disorder/

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

https://madisonarealymesupportgroup.com/2019/05/13/one-familys-story-of-strep-lyme-disease-and-pans-pandas/

https://madisonarealymesupportgroup.com/2019/07/08/psychosis-and-pans-meet-plasmapheresis-our-final-slam-dunk/

https://madisonarealymesupportgroup.com/2018/08/01/the-3-pans-myths-that-are-ruining-lives/

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

 

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