Tag: pans

  • Chronically ill child healed with diet of raw food

    HFI. Food is medicine.Who hasn’t seen or heard Hippocrates’ famous quote about letting food be your medicine and your medicine your food?  Dominic’s story is proof again that foods can the ultimate source of healing. 

    Our seemingly perfect child went to bed and woke up the following day with dilated pupils, ticcing so bad that he was literally unable to function or perform routine activities.  Antibiotics lessend the symptoms but they never fully resolved. I had dedicated two entire kitchen cabinets to supplements and remedies and was spending a small fortune on these alone. Then he was diagnosed with Chronic Urticaria Angioedema. If you haven’t heard of it; look it up. Frightening condition. Then fate stepped in, we happened to watch “Fat Sick & Nearly Dead”. He voluntarily changed his diet. He drank 6-8 eight oz glasses or organic vegetable juices and 2 fruit smoothies a day.  He ate only raw organic fruit and veggies for the first 10 days. Dominic’s Urticaria Angioedema healed! 

    The WHOLE STORY: Dominic’s Story

    Our beautiful, jovial, spirited son Dominic was diagnosed with PANS at age 6 by one of the most trusted specialists in the field, Dr T.

    His sudden onset began early October of the same year. Our seemingly perfect child went to bed and woke up the following day with dilated pupils, ticcing so bad that he was literally unable to function or perform routine activities. By the time we got him into see Dr T the symptoms worsened. The tics were now motor and vocal and he started raging at his sister.  He was having uncontrollable mood swings, irritability and began wetting the bed nightly. He shared incredibly dark thoughts that were terrifying coming from a six-year-old. Once he began antibiotics the symptoms lessened but never fully resolved. They would wax and wane then return with a vengeance until we trialed a new antibiotic and the cycle would start again.

    We kept him on them for about six months but knew deep down that there had to be a more safer, more effective, holistic way to treat this illness.  We were anxious, but we decided to  stop the antibiotics and made an appointment with a Naturopath who specialized in PANS & PANDAS. Immediately (and when I say immediately I mean within 3 days) we saw massive gains. The bed-wetting stopped. All his intrusive thoughts stopped and his behavioral issues completely resolved. By the 3rd month all symptoms were gone except for the tics, which were much less noticeable. No matter what we did we could never get rid of the tics – even after nearly two years on homeopathic remedies. That was unacceptable to me and as long as he was ticcing I instinctively knew that we didn’t reach the core of this illness and had to keep fighting. But how? I didn’t know. I had dedicated two entire kitchen cabinets to supplements and remedies and was spending a small fortune on these alone. So I took a break from all of it.  The MD’s ND’s, everything. I did continue his constitutional remedy, and vitamins C, D3, Curcumin, Omega3 and probiotics and we fortunately we did had a long peaceful stretch of normalcy. [exhale]

    That quickly came to a halt in June 2015 when my son was was diagnosed with Chronic Urticaria Angioedema. If you haven’t heard of it; look it up.  Frightening condition. He presented with hives and swelling everywhere, even his face and genitals.  We we’re terrified that his tongue or throat would be affected (which is common) so we were given epi-pens and rescue inhalers to carry wherever we went.  Juuuuust in case… Thankfully, that never happened.

    After a long discussion with his father we decided that western medicine was the way to go.  We didn’t want to risk a single chance that he would have any trouble breathing.  However, that proved useless.  After three months with no relief, his symptoms began worsening.  Once again, we were lost, desperate and had no idea where to turn. As fate would have it, one day I turned Netflix on and told Dominic that he could pick ANY movie to watch together.  He picked “Fat Sick & Nearly Dead” He had no idea it was a health food documentary – he just was amused by the title. Much to our surprise, the documentary was about a man who cured a horrific disorder by juicing…You guessed it.  He had Chronic Urticaria. It had to be a sign. I bought an Omega centrifugal juicer and started juicing immediately. He drank 6-8 eight oz glasses or organic vegtable juices and 2 fruit smoothies a day.  He ate only raw organic fruit and veggies for the first 10 days. Dominic’s Urticaria Angioedema healed!  We also realized that his tics were MUCH better.  He told us he felt “clearer and more energetic”. His ADHD was gone. His grades went from 45 avg to 90 avg in a couple of months!  Juicing far exceeded our expectations. He still juices daily, but eats a regular diet of mainly organic, dairy/sugar free foods.  He cheats only occasionally.  And I have since learned to make my own Liposomal C (he drinks high doses 3000-5000mg daily) and probiotics – Coconut Milk Kefir (1 cup a day)  He’s a happy healthy thriving normal child again. He tics only when he’s sick and that’s not too often anymore. Until those tics resolve completely I will keep fighting.  I feel confident now that we have plenty of other weapons left in our arsenal of natural remedies.  But when I find the tic annihilator I’ll be certain to let the rest of the PANDAS community know.

    This article originally appeared at: http://pansadvocacy.org/2016/02/07/dominics-story/.

  • What You Should Know If You’ve Ever Wondered If Your Child Had PANDAS or PANS (Even If Your Doctor Ruled It Out)

    SUDDEN ONSET of symptoms that present as OCD, generalized anxiety disorder, depression, bipolar, oppositional defiant disorder, mood disorder, conduct disorder, anorexia could be labeled PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep Infections) is a subset of PANS (Pediatric Acute-onset Neuropsychiatric Syndrome).Yes, PANDAS is a controversial. Remember hand washing was a critical piece of preventing illness and death and was controversial for decades before being accepted at the norm. It takes a determined saavy parent to follow their instinict. “For my family, something more than puberty hit one of my children years ago, and I knew I had to find resources to help her body heal. I turned to a group of well-researched moms at recoveringkids.com. Fortunately, I found that my child’s body needed the healing boost of probiotics found in ferments. We added magnesium and other suppliments and elminated processed sugar. Symptoms didn’t vanished but became managable. I am still amazed at how our bodies can conquer and overcome issues when provided the right nutritional support.”  – Julie 

    For a list of doctors familiar with PANDAS and PANS, see The PANDAS Network provider tab. Above all, if you think your child may have PANS, trust your intuition and keep searching for answers. We live in a time where many children are finding relief from their neuropsychiatric symptoms and a return to normalcy only because of a parent who refuses to give up. ~Ashlyn Washington

    What You Should Know…
    by Ashlyn Washington

    Despite its acknowledgement by the National Institute of Mental Health two decades ago and the estimated one in 200 children it impacts, proper recognition, diagnosis, and treatment of PANDAS and PANS continues to be an uphill battle for parents and their suffering children. One third of children see more than five doctors before being correctly diagnosed [1]. Diagnoses of Tourette’s, OCD, generalized anxiety disorder, depression, bipolar, oppositional defiant disorder, mood disorder, conduct disorder, anorexia, autism, and even childhood schizophrenia are the norm. Prompt and accurate diagnosis remains the exception to the rule. More often than not, savvy and determined parents are ultimately responsible for their child’s relief from symptoms.

    If you’ve wondered whether or not your child might have PANS but been dismissed by medical professionals or ruled it out in your own mind after researching, here are some myths you should be aware of.

    Myth 1: PANDAS/PANS is controversial.

    Even the most sound advances in medicine take time to be accepted. Decades passed before physicians bought into the idea that hand washing was a critical piece of preventing illness and death in their patients so it’s no surprise that the average pediatrician is unaware of the substantial body of research related to PANS that has been published in the past decade.

    In an effort to move past the controversy and advise medical doctors on proper diagnosis and treatment of PANDAS/PANS, the PANDAS Physician Network (PPN) was established. The PPN consists of experts from Harvard, Yale, Stanford, Columbia, Georgetown, NIH, and NIMH.

    In 2012, Lucile Packard Children’s Hospital at Stanford began their PANS Program. Since then, they’ve successfully treated hundreds of children while simultaneously conducting research and hosting an academic site. In February 2015, The Journal of Child and Adolescent Pharmacology (JCAP) dedicated an entire special edition of their journal to the latest research on PANS and PANDAS. Several additional peer-reviewed journal articles demonstrating the link between infection and neurological disorders including PANS are available here. In 2016, professors of pediatrics, otolaryngology, and neurology at Georgetown University hosted the Georgetown PANS Conference which provided continuing medical education to hundreds of physicians from all over the country.

    Surely no small town doctor, school nurse, or mother-in-law spouting their personal belief that PANS doesn’t exist would perform well in a debate with the experts at these institutions who have been successfully treating PANS for years.

    Myth 2: Labs were normal and ruled out PANDAS/PANS.

    PANS is strictly a clinical diagnosis. Expert advisors at the PANDAS Physician Network (PPN) created a simple flow chart to guide doctors on diagnosis of PANDAS and PANS.

    Notably missing from the PANS diagnostic flow chart is any laboratory testing whatsoever. Because pinpointing an infectious trigger can be helpful in determining course of action, this is addressed on page two of the flow chart covering treatment. It cannot be stressed enough that lab tests are entirely irrelevant to the actual diagnosis of PANS. Laboratory tests guide treatment, however they do not determine whether or not a child has PANS.

    Families commonly are told that their child “tested negative for PANS” based on strep or viral titers. A child cannot test negative for PANS based upon any bacterial or viral titer, nor a negative strep culture. If your doctor tells you this, share the PPN guidelines with him or her and seek care elsewhere if he or she cannot grasp this simple concept.

    It is important to note that 10% of children with PANS have co-morbid immunodeficiencies. Many of these children will have little or no antibody production despite being riddled with infection. Negative titers don’t mean they are free from infection. It simply means their immune systems aren’t functioning well enough to fight infection. Like rheumatic fever and Sydenham’s Chorea, both well established as post-strep autoimmune sequelae, PANDAS can occur many months after a strep infection, when evidence of a strep infection is no longer measurable on labs.

    When in doubt, ask for a Cunningham Panel. If your doctor is uncomfortable diagnosing or treating PANS without labs to back up the diagnosis, the Cunningham Panel can be incredibly helpful. The Cunningham Panel measures CaM kinase II as well as antibody titers against four neuronal antigens present in the brain and associated with PANS. One positive value on the panel indicates PANS is likely an appropriate diagnosis when combined with behavioral symptoms. The Cunningham Panel is based on solid, peer-reviewed research conducted by Dr. Madeleine Cunningham, an expert in post-strep autoimmune sequelae. More information can be found here.

    Myth 3: My child’s onset was not abrupt, so it can’t be PANS.

    PANDAS and PANS have been narrowly defined for political reasons and research purposes. The “abrupt onset” requirement for diagnosis has had the unfortunate consequence of allowing countless children with slow declines to fall through the cracks.

    The abrupt onset criteria was important for pushing PANDAS and PANS past its controversial history. Similarly, narrowly defining a homogeneous group of patients has been important for research purposes. This does not mean that children with a chronic or static presentation will not find dramatic relief from their symptoms with the same treatments successfully used in abrupt onset cases. Stanford, a leader in research and treatment of PANS, reported that only 40% of patients they treated had abrupt onset. The remaining 60% had a sub acute/insidious onset.

    Myth 4: My child only has a few symptoms of PANS, not every one, so it must not be PANS.

    Diagnosis of PANS requires either OCD or avoidant/restrictive food intake, paired with only two of the following symptoms: anxiety, depression, emotional lability, irritability, aggression, oppositional behaviors, behavioral/developmental regression, deterioration in school performance, sensory or motor abnormalities, sleep disturbances, enuresis, or urinary frequency [2].

    For political reasons, tics were removed from the official PANS diagnostic criteria. Tics, paired with any two of the above symptoms, are widely regarded as diagnostic by the majority of PANS experts in the field.

    Myth 5: My child was under age three or beyond puberty when their symptoms began, so it can’t be PANS.

    From the PANDAS Physician Network: “PANS has no age limitation. The age cap was based upon studies that indicated that 98% of 12-year-olds have immunity against strep infections and therefore could not develop post-streptococcal sequelae, such as PANDAS. However, the intent of the criteria was to define a homogeneous group of patients for research and not to preclude post-pubescent patients from receiving a PANDAS diagnosis, if all other criteria were met.”

    Myth 6: My child has many of these symptoms but it’s just because he has autism.

    Autism and PANS can be indistinguishable, especially when symptoms begin before age three. Soon to be published research has revealed that many children with autism have the same elevated anti-neuronal antibodies measured by the Cunningham Panel as children with PANS. PANS should always be considered in the presence of regressive autism. Obsessive-compulsive, repetitive, and anxious behaviors seen so often in autism may result from PANS. Treatment for PANS can result in relief for these children. Child and adolescent psychiatrist Dr. Susan Daily presents a school-aged boy diagnosed with ADD and autism treated for PANS with dramatic improvement here.

    Myth 7: My child isn’t concerned with germs or obsessed with hand washing so he doesn’t meet the OCD criteria for PANS.

    OCD encompasses much more than just concern over cleanliness or germs. The Yale Brown Obsessive Compulsive Scale checklist that notes various OCD behaviors can be found here.

    Some of the symptoms listed above as well as on the PPN indicative of OCD include:

    • Aggressive obsessions of harm to oneself or others
    • Sexual or religious obsessions (fear they’ve done something morally wrong)
    • Repeating compulsions (examples: going in and out of a doorway; switching on/off appliances or light switches; re-reading pages over and over)
    • Symmetry and exactness obsessions (examples: books and papers must be properly aligned; every action has to be done exactly the same on the right and left side; the child has to walk exactly in the center of a hallway)
    • Ordering / arranging compulsions (example: suddenly placing bathroom items in a particular order and extreme anxiety if they are moved)
    • Counting compulsions (examples: having to count ceiling tiles, books, or words spoken)
    • Checking compulsions and requests for reassurance (examples: repeatedly asking a parent “is this okay?” or “did I do that right?”)
    • Need to touch, tap, or rub (examples: rubbing the back of one’s hand across the table in a certain way, urge to touch rough surfaces)
    • Intrusive images, words, music or nonsense sounds (examples: unwanted images, words, or music appear in the mind that do not stop)
    • Need to tell, ask, or confess (examples: child needs to tell parent every perceived mistake or sin that day in school; excessive guilt)
    • Colors, numbers, or words with special significance (examples: the color black is equated with death and anything black triggers obsessional fears; the number 3 is “lucky” and things have to be repeated three times or 3X3X3 times
    • Ritualized eating behaviors (examples: eating according to a strict ritual; not being able to eat until an exact time)
    • Hoarding behaviors (Obsessional concerns about losing something important generalize to the point where nothing can be thrown away, or useless items take on special significance and cannot be discarded.)

    For a list of doctors familiar with PANDAS and PANS, see The PANDAS Network provider tab. Above all, if you think your child may have PANS, trust your intuition and keep searching for answers. We live in a time where many children are finding relief from their neuropsychiatric symptoms and a return to normalcy only because of a parent who refuses to give up.

    ~Ashlyn Washington

    References:

    1. 2013 Survey New England PANS/PANDAS Association
    2. PANDAS Physician Network

    This article originally appeared at: https://walkinginquicksand.com/2017/04/19/what-you-should-know-if-youve-ever-wondered-if-your-child-had-pandas-or-pans-even-if-your-doctor-ruled-it-out/.
  • PANDAS: A Scary and Controversial Disorder

    PANDAS: A Scary and Controversial Disorder

    Could a sudden, severe change in a child’s behavior be brought on by something as common as strep throat? Many experts — and distraught parents — say yes. We dig deeper to find out what’s going on, and which children are at risk.

    PANDAS syndrome sometimes referred to as PANDAS disease is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associate with Streptococcal Infections. The syndrome is characterized by a strep infection which leads to an adverse immune response resulting in inflammation of a child’s brain. When this occurs, the child very quickly starts to display significant and life altering symptoms including:

    • OCD
    • Tics
    • Anxiety
    • A change in personality
    • A regression in schoolwork such as handwriting and mathematics skills
    • Restrictive eating
    • Heightened sensory sensitivity

    While there is not yet any sort of unanimity of medical opinion regarding the syndrome, the PANDAS Network has conservatively estimated that PANDAS may affect around 1 in every 200 children although medicine.net puts the figure closer to 1 in every 2,000 although they go on to say that a proper diagnosis is often overlooked.

    The difficulty doctors have in making a proper diagnosis of PANDA syndrome is because many common symptoms are associated with the illness. Indeed a number of researchers and experts in the field recommend that PANDAS is included with similar neuropsychiatric conditions such as PANS and CANS.

    Some parents, if they can even get a doctor who will diagnose PANDAS (it’s not exactly main-stream just yet), choose to use long-term antibiotics and other pharmaceuticals to cure the syndrome.

    Such was the case with Beth Alison Maloney, the author of Saving Sammy, a book about her son’s battle with, and subsequent curing of PANDAS. It worked for Sammy, and he was cured of PANDAS, without any diet changes even, but I do wonder about the long-term health effects of long-term antibiotic use.

    Overcoming PANDAS/PANS required a comprehensive whole body approach to healing. from http://www.thefamilythathealstogether.com/pandas-syndrome-how-we-healed-it/

    Too often, if parents realize the diagnosis, they are led to believe that strep or some other pathogen is the cause of the problem and may spend years giving antibiotics or trying to suppress immune function. While such measures may result in relief for some typical children who were never beset with previous autoimmune issues, for those on the autistic spectrum, such regimens often only result in greater problems of inner ecosystem imbalance and immune dysfunction. There is mounting evidence that implicates antibiotic use in the development of autism in the first place, and repeated long-term dosing can often result in regression and further complications.

    Rather than suppression, a holistic approach deals with the underlying cause of autoimmunity; that the immune system, overworked and overwhelmed, has lost its ability to distinguish pathogen from brain cell and is attacking the area of the brain responsible for checking repetitive thought and movement. A holistic approach involves strengthening the immune system so that it can regain its vision to distinguish self from pathogen. For more and more children, a combination of nutrition, homeopathy, and herbs are making the difference. For each child the protocols must be individualized, but a comprehensive approach takes into account these steps:

    • Gut healing: A leaky gut, whereby undigested proteins, pathogens, and toxins can pass into the bloodstream provoking inflammation and immune reaction generally underlies autoimmunity. It also makes absorption of nutrients difficult which adds to immune dysfunction. Over 70% of the immune system is in the gut. Gut healing is a multistep process that can be helped with herbs and healing nutrients in conjunction with dietary changes.
    • An anti-inflammatory diet: Respecting bio-individuality, a diet that eliminates foods contributing to inflammation, allergy, and sensitivity for each person, to calm the fires of inflammation and give the immune system a needed healing rest is essential. This generally begins with removing the most well-known contributors to inflammation and immune reaction: gluten, GMOs, refined vegetable oils, dairy products, processed foods, chemical additives, pesticides, refined flours, fried foods, and sugar. Foods that serve to quell inflammation are key. A nutrient dense diet of real food that promotes a slightly alkaline internal Ph is essential to healing. Note: It is a common misconception that allergy testing can define a child’s food intolerances. Most of the food reactions our children face are not true allergies, but are due to the child’s inability to properly digest or process the chemicals (natural or artificial) or proteins in the food. These foods will not test positive as allergens, yet can be causing chronic inflammation and immune reactivity. more on a healing diet: The GAPS diet 
    • Homeopathy: This system of energy healing supports and strengthens the immune system and was key to my own son’s healing. Remedies are determined on the basis of the totality of the individual child’s symptom picture. During acute PANDAS episodes, when the child can often take on a completely different symptom pattern, an intercurrent remedy may be recommended based on the individual child’s symptom picture.
    • Anti-inflammatory herbs and nutrients that help to strengthen and support a healthy immune system are a key component of the healing process. One family found success using: 
    • Cell salts that are appropriately determined for the individual can help with nutrient absorption and healing the gut and nervous system.
    • Detoxification: Toxic overload can often contribute to the immune system’s overwhelm. Toxic metals, mold, and chemicals in the environment can act as triggers or contribute to ongoing immune dysfunction. Eliminating common environmental triggers in the home environment in combination with gentle, natural methods to improve the child’s own detoxification capacity are important. One family found success using: Diatomaceous earth, oregano leaf tincture, and intestinal tract defense

    • Balance the inner ecosystem: We have more microorganisms in our bodies than human cells and an imbalance significantly impacts immune function. Overgrowth of yeast, bacteria or parasite invasion must be overcome in order for the immune system to heal. Homeopathic methods to balance the inner terrain, such as the use of appropriately indicated bowel nosodes, particular in the wake of antibiotic use, can provide tremendous healing. To kill pathogens and candida: biocidin, monolaurin, grapefruit seed extract, and happy belly

    A dozen years ago, PANDAS was unknown to most health practitioners and the options for healing were limited. Today, we are blessed to have a wealth of holistic knowledge that provides true hope for healing autoimmunity as well as the support of a growing community of well-informed parents.

    http://www.thefamilythathealstogether.com/pandas-syndrome-how-we-healed-it/

    Story after story of healing can be found at the facebook group https://www.facebook.com/groups/recoveringkids2/