Dr. Richard Frye Presents Understanding The Overlap of PANS and Autism –
Mold Testing as well as Mold Remediation
(Finding Mold is Only Half the Battle)
Mold testing and mold remediation are never far from my mind. Now we have left Florida behind and are happily back in our own beds we should be elated, except the mold remains a constant headache and we must deal with that situation sooner rather than later.
Now I am back, I am determined to resolve the mold in our house that has caused some health challenges. This has been an ongoing issue for almost a year now but has become more pressing because right before I went to Florida, I had a dermatology appointment to have an area on my forehead biopsied. This area has been raising, scabbing and healing for several months but it is (or it was) time for it to go. I say was, because while we have been away, it has gone anyway. No trace of where it had been. All I can think is that staying in a house with filtered air potentially [Read more…] about Mold Remediation
Prepare to send your child with PANS, PANDAS (Encephalitis)
Back to School…
This can be a terrifying thought, but school begins exactly 4 weeks from now and we all want to be ready.
My best advice for anyone going through this battle? Understand school is rough for a lot of kids, let alone a child with encephalitis. A kid with PANS (PANDAS) has to battle fuzzy thinking, poor memory, dysgraphia, the need to go to the restroom 27 times a day, poor focus, loss of executive function skills, tics, compulsions, obsessions, separation anxiety can make school seem almost impossible. This may have been a child who was on the honor roll or an average student, it doesn’t matter, this disease can impact any of our children without warning. It’s nothing they did or didn’t do, and it certainly is not their fault but now they have to manage in a system that doesn’t quite understand what happened to them or how to help them. The goal for a parent now is not only for their child to remain in school but also to help them gain some traction in their studies.
Do you have an IEP or 504 in place?
If you have a child with PANS (PANDAS) and are worried about the upcoming school year, call the district offices now and schedule an appointment to talk about obtaining or adding to a 504 plan, or an IEP or even to request that school perhaps begins with homebound or intermittent homebound services already in place as the best option. You have to educate yourself now to make sure that the plan is already in place before your child walks back through those doors for their first day back to school. My favorite books for a child with PANS (PANDAS) in a school setting are
I think both of these books are superbly laid out but for our team table talks “PANS, CANS and Automobiles” proved slightly easier when we used it as a visual aid in our meetings. My yellow-highlights throughout each section helped the team build on an already comprehensive and goal-oriented IEP. The “Handbook for Educators” has been purchased over and over as well as it has proved a perfect resource to leave with members of our IEP team. We have been lucky as his team has continued to try some creative strategies for our kiddo struggling with post-infectious autoimmune encephalitis.
How to Navigate the often Complex and Confusing IDEA System of laws and make it work for your child.
In terms of IEP versus 504 requirements and understanding the laws that go along with those requests, we first purchased Wrights Law books in 2014 and in 2018, after we attended a live Wrights Law presentation, we got nice new, updated versions. We find we need to refer to these texts often.
This particular book is smaller and easier to read than the two above but a great little real-world reminder with real-life situations that other parents have encountered and what they were able to do about it.
I would love to hear your thoughts on other resources that might be available, please share creative ways you found to keep your child in school and learning while recovering from encephalitis.
#PANS #PANDAS #postinfectiousautoimmuneencephalitis #PAE #school #IDEA #IEP #504
What’s life like after treating Lyme?
January marks month 7 on Laser Lyme protocol.
Where are we now? It’s been an interesting few months, new moons, full moons, Christmas, Halloween, New Years, quite the plethora of reasons to expect hyperactivity, tiredness, and general backsliding. To keep that in check, we still remain true to our NELL protocol, but with the kids back in school, hubs back to work and my commitment to campaigning for legislative changes here in the state, it could easily slip away from us.
That aside, where are we now? Are there regrets over that long summer in the camper in NE? Have we seen any further progress? How are we maintaining?
Well in true and typical fashion nothing is very easy or predictable but we are still sitting around 80 & 85% – we haven’t made any real progress forward in the last few months really but the good news is – we haven’t gone backward. That alone is worth celebrating. We have continued to follow NE Lyme Laser protocol because it is working for us (although we don’t do the exercise and oxygen every day, or the footbath every week, and we have also not been to a chiropractor since we got back), but we do take the drops religiously every day, 3 times a day to keep the Lyme at bay. We have also chosen to work with a nutritionist (Real Food Rebel) to try to address some other areas we know we have challenges in. We completed hair testing and in light of that Brenda at Real Food Rebel has determined a targeted supplement regimen for us. Now we follow a program for healing their digestion challenges. My kids continue to do “ok-ish” on both of these programs combined. The rashes are going or gone, skin is becoming clearer and overall the kids are functioning at home and at school, which is helpful for us all. One little bump in the road is that we are having to remove the amantadine that proved so beneficial in the beginning. If you read back through old posts, after much trial and error (actually 15 different trial and errors) our doctor had prescribed amantadine – just to try and affect some positive change in impulse control. Starting amantadine is what we now refer to as a turning point for our family. Initially, we didn’t see much progress on just 100 mg once a day but once we went to the twice-daily dosing schedule, we started to see big changes. Later a tonsillectomy and adenoidectomy proved equally as beneficial and finally, we got to a point of stability which then enabled a return to school – so life changed drastically from those two interventions for sure. Anyway, around October or November last year an intermittent arm/hand tremor started to became an everyday occurrence and it was decided the time had come to remove this NMDA antagonist/antiviral/ dopamine agonist drug. Tremors can be a side effect of this medication. Never the less, it is bittersweet (it helped so much but no one wants their kiddos on long-term pharmaceuticals) to let it go because we had seen that huge progress using the Amantadine (rationale for use). It can also be tough to take this particular medication away so we are titrating down very slowly. We know that irritability, depression and suicidal ideation can be an issue with amantadine (both on it and coming off), so we are being cognizant that we might see positives and negatives in those areas before we are completely done.
As a parent, navigating all this information is overwhelming sometimes, I had heard the terms “NMDA antagonist” and “dopamine agonist” before all this started but it wasn’t my go-to in any conversation and I probably couldn’t have used either in a sentence. It was never anything I thought I would need to know, but now these terms and definitions are added to the ever-growing medical vocabulary tucked inside my memory banks. I feel like these definitions must be firmly solidified in my head because, during conversations with medical providers, we need to be semi-knowledgeable enough to agree with treatment plans which sometimes have to happen on the fly.
So what’s next?
It turns out that life after (or with) LYME often centers around mold, and this is now the new rabbit hole we have decided to chase down. I am exhausted and would really prefer to snuggle under my duvet and ignore any more LYME, PANS, Mold or infectious disease processes, seriously I really don’t know whether to laugh or cry at the thought of starting a new project all over again. My house has been tested 3 times in the past year, and we have high levels of Aspergillus penicillioides amongst other fun stuff. We only found this out after much convincing to test from friends who all agreed more had to be going on. I really didn’t believe there was mold in my house because A: We have no active leaks and B: We had completely renovated the house 5 years ago when we moved in. I was positive there was no mold, but to stop the questions, I ordered an ERMI test from Mycometrics . No one was more shocked when the results came back really high and Aspergillus was the worst.
We set to cleaning every room with a combination of water and Everclear, we also threw away hundreds and hundreds of items that might have been contaminated by mold. We painted rooms with low VOC, mold resistant paint, and we even purchased an HI TECH machine along with 2 very large unattractive Dri Eaz air scrubbers, but the mold still remains somewhere in this house. Sure, our ERMI scores have gone down significantly but not yet low enough to be considered “acceptable” to live in for someone with a Chronic Inflammatory Response Syndrome (CIRS), which we seemingly have. So – as exhausting as it is – we plan on using a different company (Conflict Free Mold), to take new samples. This will mean I can afford to do every room individually. Prior testing was one sample from multiple rooms combined on the same cloth, we did it this way simply due to cost. Unfortunately, this means that while I know I have mold and what type, I have no idea at all where the mold is concentrated or where it has spread in the house. So, pith helmet on, flashlight in hand, crawlspace here we come… not really, I will purchase a kit, and send off 10 samples (one from each room) and see if we can finally pinpoint where our problem area or areas are.
This journey was never going to come down to just one thing I suppose. It’s been caused by many things stacking against us for a long time. Lyme may be one of our triggers but the post-infectious autoimmune encephalopathy we are struggling with now, is the end result of many, many, many things, or at least it is for our family. This may help explain further – Moleculara. The longer this goes on, the more we find out, the harder we must work to resolve it. We want what everyone else wants – our kids to be as healthy and happy as possible in this life. Mold is toxic, gene SNPS create issues, bacteria, viruses, unhealthy diets, allergens and environmental toxins aggravate an already stressed immune system but we still want the best for them. So, for now, all we can say is:
“Mold!! – Challenge accepted.”
TEN THINGS A NEWLY DIAGNOSED
PANS/PANDAS PARENT NEEDS TO KNOW
Interrupting regular programming to talk about chronic Lyme and PANS/PANDAS and Neuroimmune Diagnoses
My children and I are in NE treating Lyme, this is true, but the chronic condition my children are diagnosed with is actually PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome, OR as it has morphed across the internet from the original moniker – Pediatric Autoimmune Neuropsychiatric Syndrome). This basically means my kids both have neurological and physical challenges associated with their illnesses.
I created this document for the parents who find their way to our Facebook Group. Our, meaning an organization I am currently working on. PAE KIDS SC is a parent-led grassroots organization focused on educating the community on better recognition of PANS. We are reaching out and speaking with doctors, schools, and therapists in South Carolina as well as asking for an advisory council in this state. I also thought this might help anyone who finds my blog get up to speed on the acronyms and message board topics should they wish to explore the topic further. (Someone recently told me this was overwhelming. I agree, it probably is. Bookmark this page, print it off, make notes, rest assured you will come back to this information (not just here but across the web) time and time again and eventually you will be adding things to this list. As a new parent thrown into this – it is shock and awe, but you will quickly grasp your bearings, begin researching and before the clock strikes midnight, you will realize you have searched Pubmed backward and forward and are arguing treatment protocols like a pro! Read this once, keep it, pass it along, read it again, and when you know more, come back and update us, please. Crowdsourcing works for all kinds of things now, why not healing our children?)
TEN THINGS A NEWLY DIAGNOSED PANS PARENT MIGHT NEED TO KNOW
Understand the diagnosis and acronyms: PANS stands for pediatric acute-onset neuropsychiatric syndrome, this acronym is also sometimes expanded to pediatric autoimmune neuropsychiatric syndrome. PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) is a subset of PANS. There is also another (older) acronym – PITANDS, which stands for Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorders. “The NIMH Investigators discovered that the OCD, tics, and other symptoms usually occurred in the aftermath of a strong stimulant to the immune system, such as a viral infection or bacterial infection. The first cases were given the name PITANDS for Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorders. The first reported cases of PITANDS followed infections with influenza, varicella (chickenpox), and streptococcal bacteria (strep throat and scarlet fever). (See Reference #3 for descriptions of the PITANDS cases.) Later cases were reported to occur in association with Lyme disease and mycoplasma infections (“walking pneumonia”). The NIH investigators chose to focus on OCD symptoms that occurred after streptococcal infections (the PANDAS subgroup) because of a connection between OCD and Sydenham chorea, the neurological form of rheumatic fever.” click the link to understand read in its entirety.
Who is Susan Swedo, MD? “Susan Swedo is a researcher in the field of pediatrics and neuropsychiatry, and since 1998 has been Chief of the Pediatrics & Developmental Neuroscience Branch at the US National Institute of Mental Health.” Wikipedia. Swedo wrote the first paper on PANDAS.in 1998. “In the early 1990’s, investigators at the National Institute of Mental Health (Drs. Susan Swedo, Henrietta Leonard, and Judith Rapoport) were doing studies of childhood-onset OCD and observed that some of the children had an unusually abrupt onset of symptoms. Unlike typical cases of OCD, where symptoms begin gradually and may be hidden by the child for several weeks or months (because of their embarrassment over the irrational nature of the worries and behaviors), the children in the PANDAS subgroup reported a very sudden, dramatic symptom onset. The obsessive thoughts, compulsive behaviors, and motor or vocal tics appeared “overnight and out of the blue” and usually reached full-scale intensity within 24-48 hours.” NIMH
Going to the doctor: How do I know he won’t laugh out loud when I suggest PANDAS? Sadly, they probably will at least look at you sideways but always, your first stop is likely to be your pediatrician. This should always be where you go first anyway, however, it is probably better if you do not immediately suggest PANDAS; PANDAS is a subset of PANS and is strictly tied to a strep infection. If you ask about PANDAS, your doctor will possibly culture your child’s throat, see a negative rapid strep wand and move on. However, Strep can exist in multiple areas both in and on the body, it hides and is elusive; potentially, unless your child has a raging fever, a really sore throat with sore joints and body aches, your doctor will likely dismiss your thoughts of PANDAS. Sadly most physicians have now been taught that this is a rare disorder; however, it is estimated conservatively to affect more than 1/200 children. Parental complaints of misdiagnosis fill the internet rather than stories of their concerns being taken seriously. So we suggest (BEFORE going to your doctor’s office) that you print off a copy of the Diagnostic flowchart from PANDAS PPN and the guidelines for diagnosing PANS/PANDAS to take with you to the appointment. Be aware to firmly state to your doctor that anecdotally it is thought that a large percentage of parents who found themselves in this world did NOT experience a sudden onset with their children. Most had noticed odd behavior prior to the sudden onset of crippling OCD or TICS that their children experienced. It is also worth noting what OCD really entails because it is often not at all like they portray in the movies.
The diagnostic guidelines link above will allow you to read more on the many hidden OCD manifestations that you may have missed prior to realizing this debilitating condition. Please also arm yourself with this information: Pace Foundation Guidelines
Question: If my pediatrician sends me away, how else do I get a diagnosis of PANS or PANDAS? Firstly leave the linked information above with your pediatrician. They may not have had time to read the latest research and standards of care for PANS patients, they should have but they genuinely may not have had time and it is worth discussing these flowcharts and standards of care with them. However if your pediatrician refuses to accept a possible PANS option or the care is limited at your family practice, you will be forced to move on. Technically these disorders are a clinical diagnosis but most doctors may want to run some (not all – perhaps request * first) of the following labs for infectious and vector-borne triggers.
a. ANTI-STREPTOLYSIN O Titers * (a measure of the blood plasma levels of antistreptolysin O antibodies used in tests for the diagnosis of a streptococcal infection or indicate a past exposure to streptococci.)
b. ANTI-DNASE B Titers * (blood test to look for antibodies to a substance produced by Group A Streptococcus. This is the bacteria that causes strep throat. When used together with the ASLO titer test, more than 90% of past streptococcal infections can be correctly identified.)
c. Streptozyme * (screening test for antibodies to the streptococcal antigens NADase, DNase, streptokinase, streptolysin O, and hyaluronidase. This test is most useful in evaluating suspected poststreptococcal disease following Streptococcus pyogenes infection, such as rheumatic fever.)
d. Mycoplasma pneumoniae IgG and IgM * (Two types of antibodies produced in response to an M. pneumoniae infection may be measured in the blood, IgM and IgG. IgM antibodies are the first to be produced by the body in response to infection. Levels of IgM rise for a short time period and then decline, often remaining detectable in the blood for several months. IgG antibody production follows IgM production, rising over time, and then stabilizing. Once a person has had a mycoplasma infection, they will typically have some measurable amount of mycoplasma IgG antibody in their blood for the rest of their life. In order to diagnose an active M. pneumoniae infection, a health practitioner may order both M. pneumoniae IgM and IgG antibody tests as acute samples and then collect another M. pneumoniae IgG test two to four weeks later as a convalescent sample. This combination of tests is ordered so that the change in the amount of IgG can be evaluated and because some people, especially infants and those with compromised immune systems, may not produce expected amounts of IgG or IgM) LabTestOnline
e. Lyme Western Blot and consider an IGeneX or Galaxy Lab test for coinfections of Lyme. Lyme disease is caused by a number of different strains and species of Borrelia bacteria, generally, Borrelia burgdorferi in the United States., while these two tests are typically more expensive than the standard Western Blot there is often more diagnostic success from these tests especially for – Babesia, Bartonella, Ehrlichia/Anaplasma.
f. IgG, IgA and IgM levels. *
g. IgG Subclasses, IgG1, IgG2, IgG3, IgG4
h. Ferritin * (iron levels: These tests can show how much iron has been used from your body’s stored iron. Tests to measure iron levels include: i. Serum iron – This test measures the amount of iron in your blood. The level of iron in your blood may be normal even if the total amount of iron in your body is low. For this reason, other iron tests also are done. ii: Serum ferritin – Ferritin is a protein that helps store iron in your body. A measure of this protein helps your doctor find out how much of your body’s stored iron has been used. iii: Transferrin level, or total iron-binding capacity. Transferrin is a protein that carries iron in your blood. Total iron-binding capacity measures how much of the transferrin in your blood isn’t carrying iron. If you have iron-deficiency anemia, you’ll have a high level of transferrin that has no iron.
i. Ceruloplasmin (Ceruloplasmin (or caeruloplasmin) is a ferroxidase enzyme that in humans is encoded by the CP gene.Ceruloplasmin is the major copper-carrying protein in the blood, and in addition plays a role in iron metabolism.)
j. Serum copper (Low serum copper, most often due to excess iron or zinc ingestion and infrequently due to dietary copper deficit, results in severe derangement in growth)
k. Vitamin D * (25-OH)
l. Pneumococcal antibody panel * (13, 14 or 23 serotypes)
m. CBC with differential and platelets *
n. Free T3, Free T4, TSH *
o. ANA with reflex *
p. Hemoglobin A1c
q. Coxsackie A titers/ Coxsackie B titers
r. EBV (Epstein Barr) Panel
s. HHV-6 titers
t. Parvovirus B-19 titers
u. B12, folate
w. Anti-thyroid antibodies *
x. Plasma amino acids because the symptoms of PANS/PANDAS/PITANDS are very similar, it is the trigger that differentiates the disorders. PANDAS is specifically triggered by strep, PITANDS by Infection, and PANS -: “The National Institute of Mental Health (NIMH) acknowledged that PANS, a treatable autoimmune condition, could be triggered by any number of infections (other than strep) and that patients could be diagnosed with the condition even if the infectious trigger(s) was unknown. In 2012, the NIMH released diagnostic guidelines for PANS. There is a growing number of publications on PANS, with the Journal of Child and Adolescent Psychopharmacology (JCAP) publishing a special edition on the syndrome in February 2015.” Moleculera Labs P.A.N.S. Most doctors currently use the PANS/PANDAS acronyms, but doctors are also beginning to refer to this as autoimmune encephalopathy/encephalitis (Encephalitis is often caused by an infection (bacterial, viral, parasitic) but can be due to autoimmune diseases. Encephalopathy is an altered mental status without a fever that can be due to many different causes including drug effects, lack of oxygen and toxins).
How to find a reputable doctor to treat my child? Join a Facebook Group. Other parents are often your best source of information but try to remember what worked for one probably worked for that one… all our children are different and all present differently. Allow a doctor the courtesy of diagnosing your child correctly (low iron, thyroid issues, and many other disorders can cause similar symptoms). NMDA Autoimmune Encephalitis can be life threatening which is a really good reason to fight for a correct diagnosis. Many parents manage symptoms at home by using homeopathy, essential oils, along with pharmaceuticals, herbal protocols, and supplements to name a few. The message boards are awash with information, choose wisely and use those message boards to locate a doctor that most aligns with your preferred method of treatment (MAPS/homeopathic/integrative., etc). Most of the groups are closed and the admins will want to know if you suspect your child is heading to a PANS/PANDAS diagnosis before they accept you.
Some available groups (all can be searched from Facebook):
Homeopathy & Alternative Pandas Parents
PANDAS/PANS Institute (run by Rosario Trifiletti MD, PhD, LLC a leading expert in treating PANS/PANDAS and neuroimmune disorders in pediatric patients).
Parents of Children with PANDAS/PANS/LYME/TICK-BORNE
Recovering Kids| Biomedical Healing
Google your home state + PANDAS Parents Support Group to connect to local groups
PANDAS Autoimmune Encephalitis
Parents of Children with Autoimmune Unite
PAN(DA)S IVIG Insurance Triumphs
Know the lingo: An immunoglobulin test measures the level of certain immunoglobulins, or antibodies, in the blood. Antibodies are proteins made by the immune system to fight antigens, such as bacteria, viruses, and toxins. The body makes different immunoglobulins to combat different antigens. For example, the antibody for chickenpox isn’t the same as the antibody for mononucleosis. Sometimes, the body may even mistakenly make antibodies against itself, treating healthy organs and tissues like foreign invaders. This is called an autoimmune disease. The five subclasses of antibodies are:
Immunoglobulin A (IgA), which is found in high concentrations in the mucous membranes, particularly those lining the respiratory passages and gastrointestinal tract, as well as in saliva and tears.
Immunoglobulin G (IgG), the most abundant type of antibody, is found in all body fluids and protects against bacterial and viral infections.
Immunoglobulin M (IgM), which is found mainly in the blood and lymph fluid, is the first antibody to be made by the body to fight a new infection.
Immunoglobulin E (IgE), which is associated mainly with allergic reactions (when the immune system overreacts to environmental antigens such as pollen or pet dander). It is found in the lungs, skin, and mucous membranes.
Immunoglobulin D (IgD), which exists in small amounts in the blood, is the least understood antibody.IgA, IgG, and IgM are often measured together. That way, they can give doctors important information about immune system functioning, especially relating to infection or autoimmune disease. Kids Health
IVIG: Intravenous Immunoglobulin Therapy. Immunoglobulin is part of your blood’s plasma. It has antibodies in it to fight germs or disease. When people donate blood, this part can be separated out. Then it can be given to you through a vein in your arm, or IV. If you get IVIg, it can help strengthen your immune system so you can fight infections and stay healthy. Liquid immunoglobulin is taken from the blood plasma of donors who are screened to make sure they are healthy. The plasma is tested for serious infections like hepatitis and AIDS. The plasma is purified before it’s used for IVIg therapy.
Plasmapheresis: Plasmapheresis or therapeutic apheresis is a “blood cleaning” procedure in which the child’s blood is removed through an intravenous catheter and processed by a plasmapheresis machine, which spins it to separate the formed elements (red blood cells, white blood cells and platelets) from the plasma (liquid portion of the blood which contains proteins, including antibodies and other immune components). The plasma is removed and replaced with equal volumes of albumin. The albumin is mixed with the child’s blood components and returned to his body through a second intravenous catheter. Because the blood volume to be processed is relatively large, and multiple procedures are needed, plasmapheresis often requires insertion of a central line (to ensure adequate venous access for both egress and ingress of the blood). In older children or those with superior antecubital veins, the procedure can be accomplished peripherally. https://www.pandasppn.org/plasmapheresis/
Rituximab: Rituximab, sold under the brand name Rituxan among others, is a medication used to treat certain autoimmune diseases and (in much higher doses in combination with other drugs) types of cancer, it is a genetically engineered chimeric murine/human monoclonal IgG1 kappa antibody directed against the CD20 antigen. This is not a first line of defense and should be considered only with careful discussion with a knowledgeable provider.
Low Dose Naltrexone: (LDN) what is LDN “suggest that LDN may operate as a novel anti-inflammatory agent in the central nervous system, via action on microglial cells. These effects may be unique to low dosages of naltrexone and appear to be entirely independent of naltrexone’s better-known activity on opioid receptors. As a daily oral therapy, LDN is inexpensive and well-tolerated.”
Mast Cell Disorder: (cytokine storms). Many parents feel their children have this disorder in addition to or as a trigger for PANS or PANDAS. “Mast cell activation syndrome (MCAS), also commonly referred to as mast cell activation disorder (MCAD), is an immunological condition in which mast cells inappropriately and excessively release chemical mediators, resulting in a range of chronic symptoms, sometimes including anaphylaxis or near-anaphylaxis attacks.” Mast cell activation syndrome
Suramin: “… a small, randomized clinical trial conducted by Robert Naviaux, MD, PhD, professor of medicine, pediatrics and pathology, and colleagues at University of California San Diego School of Medicine have found that a single intravenous dose of suramin produced dramatic, but transient, improvement of core symptoms of autism spectrum disorder…” To help fund further research into Dr. Naviaux’s cell danger response research which may potentially benefit any autoimmune or neuroimmune disorder, you can donate directly Donate to Suramin Phase II Trial.
Is there a specific blood test to tell me if my child has PANS/PITANDS or PANDAS? The Cunningham Panel™ aids in the diagnosis of Neuropsychiatric Disorders. This test is typically available through specialist providers of health care for children with suspected PANS; however, if you wish to order this test through your pediatrician they will need to contact Moleculera Labs and obtain a kit, the instructions are enclosed for the patient and the kit is shipped directly to your home. The patient locates a lab to draw the blood for testing and the lab typically ships the specimen by return to Moleculera. This may need to be completed at an outside testing lab such as Any Lab Test Now or a similar type location. To order the panel (you will need a physician): How to order. The purpose of the Cunningham Panel™ is to provide laboratory results to physicians as an aid in their diagnosis of Neuropsychiatric Disorders. This panel measures the level of circulating antibodies directed against antigens concentrated in the brain and measures the ability of these and other autoantibodies to increase the activity of an enzyme (CaMKII) that upregulates neurotransmitters in the brain. Cunningham Panel Neuropsychiatric Disorders tests: The panel consists of five tests. Four of these tests provide results that are expressed as a titer, or final dilution, at which an endpoint reaction was observed on an Enzyme-Linked Immunosorbent Assay (ELISA) format. These tests measure circulating levels of autoantibodies directed against specific neuronal antigens, including: Dopamine D1 receptor (DRD1), Dopamine D2L receptor (DRD2L), Lysoganglioside GM1, and Tubulin. Autoimmune antibodies that bind to these targets may interfere or potentially lead to a blocking or stimulation of the function of these antigens. This, in turn, may trigger movement and neuropsychiatric disorders, along with OCD and abnormal neurologic behavior. The 5th test, CaM Kinase II (CaMKII, Calcium-dependent Calmodulin Protein Kinase II) activation, produces a laboratory value (expressed as a numeric score) that reflects the percent above or below baseline CaMKII activity in a human neuronal cell line. CaMKII is a key enzyme that is involved in the upregulation of many neurotransmitters such as dopamine. CaMKII is also understood to increase the “plasticity” or sensitivity and responsiveness of neurologic receptors to neurotransmitters.
Are there any dedicated treatment facilities?
Stanford was the first academic institution to start a multidisciplinary PANS service. They also hosted the first national PANS conference in the spring of 2013 where they worked to create clear diagnostic guidelines. Stanford along with the The Pace Foundation are groundbreaking clinics. The Pace Foundation “as a strategic partner with the NIMH, the University of Arizona and Banner Healthcare, announced the grand opening of the 1st Center of Excellence (COE) in the world focused on Pediatric Autoimmune Encephalopathy (PAE) The Children’s Postinfectious Autoimmune Encephalopathy (CPAE), on August 30, 2016. The Center treats patients and conducts world-class research on a wide spectrum of diseases (PANS, PANDAS and similar pediatric Autoimmune Encephalopathy disorders). Our goal is for the COE to open clinics throughout Arizona during 2017. … The PACE Foundation is excited to be working with the National Institutes of Mental Health (NIMH) to facilitate cooperation across a group of 13 Nationally Recognized Academic Research Centers across the United States. This effort will help standardize training, education, and treatment for patients suffering from Pediatric Autoimmune Encephalopathy (PAE) diseases like PANS, PANDAS and similar pediatric Autoimmune Encephalopathy disorders. “In reality, these two clinics will only serve you well if you are close to them so most parents have to rely on doctors who are out of network and often out of state. Pandas PPN has a search tool with doctors who will be able to help (Practitioner search) and again, other parents are often your best friend when picking a new doctor. DUKE University will treat some AE patients but some of my friends, have personally reported to me, they were turned away with a PANS/PANDAS diagnosis, ourselves included because we don’t fit their criteria. Duke Neurology
It may be worth calling Pediatric Neurologists or Immunologists in your area to find out if they treat pediatric autoimmune disorders before making an appointment.
Ready to get more involved?
Reach out to your local PANS/PANDAS organization:
MIDWEST PANDAS/PANS Parent Association
New England PANS/PANDAS Association (some amazing graphics and information, especially for schools, are here).
PANDAS/PANS Advocacy & Support IL based support
PRAI KIDS Virginia, PRAI KIDS North Carolina, PRAI KIDS South Carolina (The group I am involved with).
SouthEastern PANDAS/PANS Georgia basedOther Worldwide and US Support Group Information can be found at www.pandasnetwork.org
PANS, CANS, and Automobiles: A Comprehensive Reference Guide for Helping Students with PANDAS and PANS Paperback – June 9, 2016 by Jamie Candelaria Greene (Author) My personal favorite.
PANDAS and PANS in School Settings: A Handbook for Educators by Patricia Rice Doran (Editor), Diana Pohlman (Foreword), Margo Thienemann (Contributor), Darlene Fewster (Contributor), Amy Mazur (Contributor), Janice Tona (Contributor), Kandace M. Hoppin (Contributor), & 1 more
For children: In A Pickle Over PANDAS Paperback – June 1, 2015 by Melanie S. Weiss (Author)
Scour the links provided in this document. These websites will give you access to published research, comorbid diagnoses, treatment options, doctor referrals
Bonus tip 😀 – Know that PANS/PANDAS treatments can be expensive, wine can be found in boxes. It may not be as elegant as glass bottles but it is certainly cheaper.
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Disclaimer of Medical Advice:
The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.
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The information, including but not limited to, text, graphics, images and other material contained in this website are for informational purposes only.
The sole purpose of this website is to promote a broader consumer understanding and knowledge of my lived experience with a health topic that affected my family.
It is not intended to be a substitute for professional medical advice, diagnosis or treatment.
Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen, and never disregard professional medical advice or delay in seeking it because of something you have read here or anywhere else on my blog.