What is PANDAS and PANS?

Does my child have PANDAS/PANS or do they just have regular OCD, anxiety, or behavior problems?

What steps should I take if I suspect PANDAS/PANS?

PANDAS - (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections)  PANDAS is an autoimmune disorder which happens when misdirected strep antibodies attack the brain inflaming the basal ganglia causing behavioral changes and a sudden onset of anxiety, OCD or tics.  Symptoms also include sensory abnormalities, frequent urination, dilated pupils, anorexia, ADHD, and regression in handwriting skills and the ability to do math.

PANS - (Pediatric Acute-onset Neuropsychiatric Syndrome) This is essentially the same thing as PANDAS, but has an infectious or environmental trigger other than strep causing symptoms.

Experts estimate that PANDAS/PANS effects about 1 out of every 200 children.  Many of these children go undiagnosed or misdiagnosed, so it is still considered to be an uncommon disease.  Even though only 0.5% of children have PANDAS/PANS both of my children have it.  Therefore, I have made it a mission to understand, battle, and win back my children.  

 

After I published an article about my son in Huffington Post, I have been flooded with questions about PANDAS.  I compiled common questions on the topic and outlined my best answers.  These are, of course, my opinions.  I do not have a medical degree and my advice should not be taken in place of a doctor.  I simply hope to direct you to the best treatment choices for your child.  I have read everything that I could find on the topic, watched every video from all of the medical conferences, and I have lived it for the past 8 years.  This is what I have learned along the way.  I am attempting to light the path that, until recently, parents had to feel their way through in the dark.   

Healing your child from PANDAS is not always a straight easy path.  There are still many unanswered questions about the illness.  Even the leading specialist debate the best course of  treatment.  By definition, PANDAS/PANS has an episodic course.  That means that there are ups and downs.  Just when you think that your child is making great progress and you have this disease figured out, you are hit with another flare and you will have to pull them out of again.  No two kids will have the same symptoms or response to treatment.  The illness is complex and multifactoral and treatment usually involves diet changes, supplements, detox, and immune healing.  Most kids don't simply take a course of antibiotics and are then symptom free for life.  Even if your child has made a total recovery, they could relapse again with the next exposure to an infection.  You must educate yourself and not rely on your local pediatrician to know all of the answers.

  • Go to the doctor and ask for a throat culture. Have them look for ear or any other infections.

  • Blood tests to rule out any possible infection.

    • Strep

    • Epstein-Barr virus (EBV)

    • Coxsackievirus

    • Mycoplasma Pneumonia

    •  Lyme

  • Ask for at least 3 weeks of antibiotic.  (Many time the 10-day course is not enough for our kids).  The antibiotic that they give you, will vary depending on the infection.  If the antibiotic is not working or it helped but they are not back close to baseline, switch antibiotics or ask for another round of them.

  • If they experience symptoms again after they finish the antibiotics, ask for another dose.

  • If they continue to have symptoms every time they finish a round of antibiotics, start a prophylactic dose. 

  • Go gluten and casein free.  Gluten and Casein can cause inflammation in the body exacerbating symptoms. Many kids with PANDAS do much better when they don't eat them.  See the diet page for more.

  • Detox - avoid chemicals, preservatives, food dyes, mold and environmental toxins. See the Biomedical  page :

  • Give Motrin around the clock.  Every 8 hours for 5 days and see if you notice a difference.  If you do, then that is an indication that there is inflammation.

  • Some doctors will prescribe steroids for a flare.  If this works well, then you have more proof that the behaviors are caused by inflammation.  However, some kids get aggressive on steroids, so you should weigh that decision carefully.

  • If blood tests indicate that infection remains even on antibiotics, see an ENT and consider getting the tonsils and adenoids taken out.  (This is debated in the PANDAS community, but many have seen big improvements after a T&A).

  • If your child has been on long term antibiotics for a few months, they have had their tonsils and adenoids taken out, and are still having major symptoms, consider IVIG.

How and why should I Detox?

Detox-  Most children with PANDAS/PANS have a common gene mutation know as MTHFR.  This mutation effects the methylation cycle.  (The way that the body process B vitamins, specifically L-methylfolate, and the ability to detox is greatly affected).  When this methylation cycle is not functioning efficiently, it allows toxins to build up in the body and dysregulates the immune system.  So to truly heal your child, you have to help support the methylation cycle.

Get a script for Deplin or purchase another high quality Methl B-12/Methyl-Folate supplement. Stop eating foods or using vitamins that have synthetic folic acid in them.

Investigate detox method and use detox that you are comfortable with.  The commonly used ones are Epson salt baths and oral activated charcoal.

Find more on detox here:

What to do if symptoms get worse before they get better?

What other tests should I ask for?

  1. Cunningham Panel - If tests are inconclusive or if you still have questions about if it is really PANDAS or PANS, there is a test that a PANDAS specialist can order called the Cunningham Panel.  Some other doctors may also order it for you, but most other doctors are not even going to know what it is and will not know how to read it.  This test is about $1000 which you will need to pay for out of pocket.  You can then submit it to your insurance company and possibly get reimbursed for part or even possibly all of it. 

  2. IGeneX – If symptoms are lingering or you have not been able to find an infectious trigger, many people have found answers with Ingenex.  This is a specialized Lyme test that has found tic borne infections that many other standard test have missed.  You may need to find a LLMD (Lyme Literate Medical Doctor) to know how to order and interpret the test results.

  3. Genetic testing- It may also be useful to have genetic testing done to look for any gene mutations that could cause any of the issues that your child is having.  There are some genes that can be associated with Autism, Tourette's or other conditions that can have similar symptoms to PANDAS.  Most people with PANDAS/ PANS find that they have a MTHFR gene mutation.  This can be helped with methyal-folate supplements, diet changes and detox.

If you start antibiotics and your child is getting worse on them instead of better, this could be a Herx reaction. Jarisch–Herxheimer reaction or herxing happens when dead bacteria release their endotoxins into the blood stream faster than the body can eliminate it.  This provokes an inflammatory response. This is because the antibiotic is working – don’t stop the antibiotics.  Give them lots of fluids and things to help their body detox.

What can I do if symptoms linger and I can’t get my child back to baseline?

  1.  If blood test are still showing infection, continue long term antibiotics – make sure to be giving them quality pro-biotics daily as well.

  2. Use supplements to help break up the biofilm.  Bacteria can make a slippery substance around their colonies and hide.  Antibiotics can't penetrate this biofilm and kill them.

  3. Consider getting their tonsils and adenoids taken out.  Bacteria can hide in the deep pockets of the tonsils or deep in the sinuses.  Many kids have had significant improvement after the procedure.  It is debated in the PANDAS medical community whether it truly helps and if it is worth the risks of surgery.  It is not a decision to take lightly.  It can have complications and is a very painful recovery for your child.  

What if they keep testing positive for Strep?

Many families can’t seem to get the Strep out of their house.  They pass it around between family members and seem to always have a positive throat culture.  If this is the case, try the following:

  1. Change tooth brushes frequently and sanitize the bathroom daily.

  2. Have everyone in the house tested for Strep and treat everyone who has a positive culture.

  3. Test the family dog for Strep- they too can be a carrier.

  4. Change antiboitic - People report having the best results with Cefdinir, Omnicef, Augmentin, and Biaxin.  Penicillin and Amoxicillin are not strong enough in many cases.

  5. Keep your child on a prophylactic dose of antibiotics.

  6. Use supplements like NAC or proteolytic enzymes to break down the biofilm.

  7. Get tonsils and adenoids taken out.

  8. Consider home schooling. - Many families have found it helpful to home school for a while to reduce anxiety, have a more flexible schedule for medical care and appointments, and to reduce exposure to strep and other illnesses.

When is it time to see a PANDAS Specialist?

Some Pedatrition are finally getting educated on PANDAS/ PANS and recognizing and treating it effectively.  If you catch it early, many times a 3-week course of antibiotics and some diet and supplement changes can keep it under control.  Some doctors will give you long term or prophylactic antibiotics and refer you to an ENT to get a tonsilectamy.  This alone may be enough to get your child back to close to 100%. 

If your child still has symptoms that effects their quality of life, you can’t find a doctor to treat it medically, or you feel that they need IVIG or Plasmapheresis, it is time to find a specialist.  PANDAS Specialist are wonderful, but expensive and most don’t take insurance.  You will pay about $1000 dollars per visit out of pocket. 

How do I find a doctor?

The PANDAS Network has compiled a wonderful list of PANDAS doctors in the US and worldwide.  Check there and see if there is a doctor near you.  See if you can find a doctor that takes your insurance.   You may also want to join a Facebook closed group about PANDAS/PANS.  There you can ask if anyone else is in your area and has found a doctor who takes insurance and is knowledgeable and willing to treat.  

The PANDAS/ PANS institute in New Jersey run by Dr Rosario Trifiletti is fantastic for treating kids who have been conically ill for years going misdiagnosed.  He is able to find answers that many other doctors overlook.  He is a brilliant physician who has dedicated his carrier to helping kids with PANDAS/PANS.

What is IVIG and Plasmapheresis?

There are many things that people have noticed help their child’s symptoms other than prescription drugs and procedures.

  • A gluten free Casein free diet.

  • Eliminating food dyes and other chemicals and preservatives in the diet.

  • A dose of Ibuprofen around the clock to reduce inflammation.

  • Melatonin to help sleep.

  • Avoiding other children and places where there are a lot of germs.

  • Home schooling - Some people have found it necessary and beneficial to home school to reduce stress, anxiety, and exposure to germs.

  • Essential oils- Many people have treated their child with essential oils and have seen positive results.  There is a Facebook group called Oily PANDA that can help you with this.

  • Supplement vitamins that they are deficient in, especially those that support the immune system like vitamins D, C, and B-12.

  • Avoid toxins in food and the environment.

  • Support the Methylation Cycle with Methyl-folate and NAC.

  • If they are getting sick a lot, you can try elderberry, echinacea, zinc, or vitamins D and C to support the immune system.  However, if their immune system is already overactive with antibodies, then you may not want to simulated it to produce more of those antibodies. 

  • See the biomedical page for more ideas 

What things can I do to naturally help PANDAS/ PANS symptoms?

  • Was there a sudden and drastic change in their personality?

  • Do they seem to have good weeks, days, or hours and then bad ones for no apparent reason?

  • Is there a family history of autoimmune disorders?

  • Was your child very advanced socially, academically, and/or physically then regressed suddenly?

  • Do they have other physical signs of PANDAS/PANS like dilated pupils, handwriting changes, frequent urination, sleep difficulties, or Choreiform Movements?

  • Do you notice increased behaviors or a regression in the weeks after an illness?

  • Do they rarely get a fever?

  • If they do get a fever, does behavior improve significantly when they have a fever?

*If you answered yes, then there is a good chance that they have PANDAS or PANS.

  • Is there a family history of OCD or major anxiety?

  • Has your child had delays or behavior issues since they were a baby?

  • Do they have tics, anxiety, or OCD by themselves with no other symptoms?

  • Are symptoms constant over the last few years with no ups and downs?

*If you answered yes, then there is a good chance that they do NOT have PANDAS or PANS.

Should I use psychiatric medications or SSRIs?

This is another decision that needs to be weighed carefully by the parents and discussed with your doctors.  In many cases, these drugs make kids with PANDAS/PANS much worse.  They can exacerbate symptoms and have many other unwanted side effects.  Many children who have been misdiagnosed have been prescribed many of these drugs with negative effects.

However, some people have also found these drugs to be helpful.  Sometime a low dose of an SSRI is enough to get your child through a period of extreme anxiety until the infection and autoimmune response can be treated.

Some doctors, including nearly everyone I took my son to, think that you should just treat the symptoms of PANDAS with medications to address the tics, ADHD, and anxiety.  This turns out to be a powerful cocktail of drugs with lists of side effects.  We tried Zoloft for a short time with my son.  It took the edge off a little, but Motrin, antibiotics, and IVIG have made 10 times the improvements that Zoloft ever did.

Another argument against medications that they treat the symptoms and not the infection or immune response.  How will you know when your child is healing when you have covered up the symptoms?

OCD, anxiety, depression, and anorexia are horrible symptoms to suffer though for both the child and their family.  Anything that reduces the suffering until the treatment has time to work can be a good.  I would just be cautious that the medications are not making the symptoms worse or the side effects are worse than the symptoms.

Vaccines are a very heated topic.  There are strong arguments on both sides of the issue.  This is a decision that needs to be weighed heavily by the parents.  I am a believer in herd immunity.  If no one vaccinated, those of us with children who have PANDAS and other immune issues would be much worse off.  However, I also do not think that vaccines are safe for all children.  Children with the MTHFR gene mutation are at greater risk for side effects.  They are not able to handle the toxins that are still used in immunizations.  Those who are immune compromised due to low immunity or have an active infection are at risk for negative reactions as well. 

 

I would never vaccinate if your child is currently ill, if they have active PANDAS/PANS symptoms, or if they have had negative reactions in the past.

If you do chose to vaccinate:

  • Consider having the adults or other healthy children in the home get the flu vaccine to reduce the chances of bringing it into the home.

  • Do so when your child is completely healthy.

  • Detox afterwards.

Should I continue to vaccinate my child?

If my child has been sick for a long time, can they still heal from this?

Yes, there is a lot that you can do for a child who has been misdiagnosed and untreated for years.  My son was sick for 6 1/2 years.  He was misdiagnosed and untreated the entire time.  Over the years, he lost physical, social, and cognitive skills while the list of symptoms like anxiety, OCD, and tics increased.  With each infection, symptoms spiked and then slowly faded over weeks or months until he was exposed to an illness and spiked again. 

 

The recovery paralleled that of the illness in many ways.  Antibiotics gradually helped all of the symptoms.  He made  big gains after his tonsillectomy; he made good eye contact and became more verbal than he had been in years.  After each IVIG treatment, he also had another large reduction in symptoms; his pupils returned to a normal size, tics reduced significantly, he began eating better and gaining weight, and depression lifted.  He improved more with each IVIG (he has had 3 so far).  It has been close to 2 years since we have been actively treating PANDAS, and he continues to regain skills.  Most of the gains have been slow and gradual over months, with sudden noticeable differences after each major procedure.  His ADHD symptoms and intellectual skills improved significantly, but it has been a slow and steady increase over the past year and a half. 

 

The longer that your child has been ill, the harder that it will be to completely recover from PANDAS.  There is no research on the topic to say for sure if there will be any permanent brain damage or how much they can recover.  The longer that they have been ill, the longer that they have established routines and an identity around the behaviors.  I think that some anxiety and OCD behaviors become ingrained over time and become routine.  It is difficult at times to determine the difference between behaviors due to brain inflammation and those from established habits.  Especially as they approach the teen years, those who have been chronically ill with PANDAS for years identify themselves as shy, stupid, bad at math, or even crazy.  My son has told me, "I don't remember life before PANDAS.  You may remember when I was smart, but I don't."  He is slowly gaining a new identity and realizing that it was the PANDAS that made school difficult, not that he was stupid.

After talking to other PANDAS parents and reading hundreds of their posts, it seems like most children who have had symptoms for years respond well to treatment.  They usually need multiple IVIG infusions however.  Recovery is then a slow process that takes a year or more for the neurons and brain to heal.

These children need a PANDAS specialist.  They will need a doctor who knows what test to run to find infection and auto-antibodies.  Once symptoms have been present for 2-3 years or more, these children usually need multiple rounds of IVIG or Plasmaphresis to fully recover.  You will need a specialist with extensive experience to help you navigate this treatment.

Can adults get PANDAS/PANS and does treatment work for them?

I have heard many stories of adults who have had PANDAS/PANS.  The official criteria states that it must be a pediatric condition, however, there are many people with a later onset and many others who have not received proper treatment in childhood or adolescents so it has continued into adulthood. 

Treatment can help them significantly, especially if it is started early.  There is a facebook group for adults with PANDAS.  This will be a great source of information for those looking for information on adults.

These procedures are hard to get and very expensive.  You must see a PANDAS specialist to even get them ordered.  These procedures work best if all the active infection has been treated first.  If you still have an active infection, it may not work at all or it may wear off quickly.

Once your child has been on antibiotics for a few months, had their tonsils and adenoids out, and you have done diet changes and supplements and they are still struggling, it is probably time to see a PANDAS specialist and start thinking about IVIG. 

 

If your child is very ill needing hospitalization, is suicidal, or is severely anorexic, then I would do IVIG or Plasmapheresis as soon as possible.  PEX is only used for children who have severe life threating symptoms.  There are only a few doctors and facilities in the country where they are preforming it for children with PANDAS or PANS. 

When should I consider IVIG or Plasmapheresis?

IVIG stands for Intravenous immunoglobulin.  It is the pooled immunoglobulin G (IgG) immunoglobulins from the plasma of thousands of donors.  At a low dose, it is used to treat people with a low immunity.  High dose is usually used to treat autoimmune disorders.  High dose IVIG is usually prescribed for kids with PANDAS and PANS.  The low dose boost the immune system helping to fight off infection.  The high dose helps to stop the autoimmune response therefor stopping the immune attack of the brain.

Plasmapheresis is a medical procedure preformed in the hospital.  It  is a process in which the  the blood, or plasma, is separated from the cells in a machine.  The process is similar to that of dialisis. A machine removes the plasma and replaces it with good plasma, or a plasma substitute. This procedure is sometimes called plasma exchange  or PEX.

Books About PANDAS/PANS and Autoimmune Encephalitis: