I think my child has PANDAS. What do I do next?

Latest posts by Michelle Jacobs, ND (see all)

What is PANDAS? 

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infection. This condition is characterized by a sudden onset of psychiatric symptoms after a Group A Beta Hemolytic Streptococcal infection (GABHS). Many have only heard about Strep throat, in which the strep infection is in the throat. However, it can also occur in the gastrointestinal system, on children’s bottom, or on the skin. PANDAS typically occurs in children between 3 years of age and adolescence and is particularly prevalent in boys. It is estimated that 1 in 200 children are affected by PANDAS, although it is likely that this number is much higher due to misdiagnosis. One thing to note is that the neuropsychiatric symptoms do not always present right after a known strep infection. Instead, a child may not have any “typical” strep symptoms and will develop neuro symptoms months later. 

For an overview of the difference between tics, Tourette Syndrome, OCD and PANDAS see this article: When a Tic isn’t a Nervous Habit (PANDAS: Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections)

Signs and symptoms suggesting PANDAS:

Many parents will say that their child went to bed their happy go-lucky self, and awoke the next morning completely different. Or they went to school and came home a totally different, unmanageable child. These sudden symptoms include severe separation anxiety, motor or verbal tics, regressive symptoms like a dramatic change in handwriting, obsessions and compulsions, changes in urination, new onset of bedwetting, sensory sensitivities, restricted food intake, and changes in mood. Your child may have suddenly presented with one or all of these symptoms leading you to think of a possible PANDAS diagnosis. 

How can an infection change your child’s behaviors?

In a healthy child, they may be exposed to a streptococcal infection, which signals to the immune system to create antibodies. These antibodies then attack the strep bacteria to get rid of the bacteria. The child may be sick for several days before completely eradicating the strep infection and the symptoms resolving. This is how a normal immune system works! In a child with PANDAS, however, these antibodies attack antigens in the brain causing an inflammatory reaction. This is an error of the immune system and can be classified as autoimmune activity.

My child changed overnight, now what?

1. Find a PANDAS literate doctor

There are not many PANDAS literate doctors in the country, and there are even more doctors that may not believe in a PANDAS diagnosis. PANDAS providers can be found on pandasnetwork.org. 

2. Ask your pediatrician to do a rapid strep test, throat culture and/or strep titers

If you are unable to find a PANDAS literate doctor or are on a waiting list for one, it is worth asking your child’s pediatrician if they will run some tests that may help in a PANDAS diagnosis. The first being a rapid strep test or throat culture. These will pick up if your child currently has strep throat. Not all PANDAS children will have a positive throat culture, because remember, strep can be in other places. Second, you can check ASO and Anti-DNase B titers. These are two blood tests that detect whether there are antibodies to strep in your child’s system. Most, but not all PANDAS children will have an elevated titer. 

3. Gather family history and make a timeline 

Gathering pertinent info and coming prepared to your visit with your doctor will make the visit more efficient and worth your time and money. Prior to the visit, I encourage you to write down a family history in regards to recurrent strep infections, rheumatic fever, scarlet fever, Sydenham’s chorea, rheumatoid arthritis, removal of tonsils or adenoids, mental health diagnosis’, and autoimmune conditions. Additionally, it is helpful to create a timeline of family events, symptoms of your child and family members, any diagnosis’ and lab results (if any). I recommend beginning your timeline at least a year before you noticed symptoms in your child. 

4. Use food as medicine 

Food will not cure your child of PANDAS, but it can help with symptom management while you wait to see a provider and start an individualized protocol. The three main goals of using food as medicine for children with PANDAS are to starve the strep bacteria, reduce inflammation, and balance the immune system. First, because all bacteria thrive on sugar, it is recommended to completely eliminate simple carbohydrates. Simple carbs include cookies, candy, soda, white bread, and cereal. Second, because PANDAS is an autoimmune condition where there is increased levels of inflammation, specifically in the brain, it can be helpful to eat an anti-inflammatory diet. Including things like turmeric, ginger and garlic, wild salmon, berries, extra virgin olive oil, avocados, nuts and seeds, and leafy greens can help to decrease your child’s inflammation. And lastly, because a large portion of our immune system lives in our intestinal tract, it is important to focus on supporting your child’s digestive system. Some foods that help heal the gut and feed the healthy gut bacteria are sauerkraut, kombucha, pickles, and bone broth.

5. Find support via a PANDAS parent Facebook group

There are tons of PANDAS parent Facebook groups where parents share stories and offer support. Having a child with PANDAS can feel very isolating, as you may have never met someone with a PANDAS child. Facebook groups can be a great place to feel heard and talk with other parents experiencing something similar. 

Facebook groups to consider: P.A.N.D.A.S Parents, PANDAS PARENTS, PANDAS-Pediatric Autoimmune Neuropsychiatric Disorder Associated w/Strep, PANS/PANDAS Parent Support, Parents of children with PANDAS/PANS/Lyme/Tick-borne diseases 

6. Do not lose hope and give your child calm reassurance

I want to encourage you that PANDAS is not a death sentence and there is so much hope. You may not even recognize your child and have hit roadblock after roadblock with other medical professionals and overmedicating your child. PANDAS can be so scary, but as a Naturopathic Doctor who sees PANDAS children, I want to say there is so much hope. It may not be easy but I encourage you to give your child calm reassurance. Letting them know that you are trying to find them help and they will go back to school, they will be able to leave the house and play with friends, and that you still love them immensely. 

Parents, you know your child best. If you feel like your child isn’t just going through a phase, I am encouraging you to follow your parental intuition. The reality is that most parents suggest a PANDAS diagnosis before their pediatrician does. This is incredibly important, because early intervention can be crucial for long-term recovery. 

 

Citations:

  1. Pandasnetwork.org. 2020. Statistics – PANDAS Network. [online] Available at: <http://pandasnetwork.org/statistics/> [Accessed 20 May 2020].
  2. Thienemann M, Murphy T, Leckman J, et al. Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Part I—Psychiatric and Behavioral Interventions. Journal of Child and Adolescent Psychopharmacology. 2017;27(7):566-573. doi:10.1089/cap.2016.0145.
  3. Cooperstock MS, Swedo SE, Pasternack MS, Murphy TK, Consortium FTP. Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Part III—Treatment and Prevention of Infections. Journal of Child and Adolescent Psychopharmacology. 2017;27(7):594-606. doi:10.1089/cap.2016.0151

 

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Michelle Jacobs, ND
Michelle Jacobs, ND
Michelle Young, ND is the founder and owner of Young Medicine, a naturopathic clinic in San Diego, CA. She received her Doctorate of Naturopathic Medicine from Bastyr University California and is a licensed doctor in the state of California. Dr. M focuses on integrative pediatrics, with a goal of finding the root cause of illness and guiding and supporting parents and children on the road to true lifelong wellness. And ultimately, empowering children and teens to grow up to become thriving, healthy adults. Her main clinical focuses include children with ADD/ADHD, Autism Spectrum Disorder, chronic digestive concerns, and PANDAS/PANS.

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