PANDAS – “pediatric autoimmune neuropsychiatric disorders after Strep” – is a category of nervous system conditions that children can develop after an infection, such as strep throat.
Parents of children with PANDAS tell me their child’s anxiety, tics or OCD symptoms came on suddenly – “out of the blue”. When we ask a few more questions, they often recall a memorable illness their child had – such as a fever, sore throat, vomiting or diarrhea – within a few weeks of the onset of their child’s new, neurological symptoms.
PANDAS was first defined in 1998 by Susan Swedo et al. (You’ll find the reference to the published medical journal article here).
As an autoimmune condition, PANDAS symptoms may get worse with certain triggers. These include not getting enough sleep, exposure to stress, an emotional upset, or eating foods or food additives she’s sensitive to.
You may notice your child clearing her throat or shouting in a way that reminds you of Tourette’s syndrome after she’s gotten sick with a cold or flu. She may have anxiety or insomnia after being exposed to stress. She may have sudden separation anxiety or fear of the dark. She may be highly sensitive to certain foods, additives or perfumes. She may have defiant or other difficult behaviours at home or school. And she may suffer with compulsive behaviours such as tapping, rubbing, or “checking” things repeatedly.
Children with PANDAS may suffer at school from anxiety about their tics or compulsions they can’t control. Often, their handwriting markedly changes. It may slant to a side or become quite messy even when the child has previously had good penmanship.
Why ARen’t Kids With PANDAS Getting Help?
Unfortunately, the majority of kids I meet who have PANDAS are suffering from a lack of education in the medical community about this condition. When I first started treating a child with PANDAS and chose to go a more medical route first (i.e. requesting treatment with antibiotics) my patient’s family physician wasn’t familiar with the diagnosis, but agreed to try the antibiotic treatment. It gave limited results.
Since then, I’ve learned that a more natural approach, including healing the gut (where 75% of the immune system resides), removing sources of inflammation, optimizing their immune function and reducing their stress and anxiety has made a lasting impact on these kids’ experiences.
When working together, your child may need additional blood work, sometimes antibiotics, and complementary care including clinical nutrition, counselling, and homeopathic medicine.
WHY ANTIBIOTICS DON’T WORK
Your child may have received repeated doses of antibiotics for PANDAS symptoms. If that’s the case, you may have noticed her tics or anxiety reducing less and less with each subsequent round, or that the symptoms come back as soon s the antibiotics are finished.
Bacterial resistance is when the strep bacteria learn how to resist the antibiotics and “hide” in the gut and nervous system. Antibiotics usually become less and less effective with each round when attempting to treat PANDAS symptoms, and there’s plenty of evidence that antibiotics use should be used with the utmost caution and reservation. The fewer rounds of antibiotics in kids, the better, in order to maintain their effectiveness in case of a future potentially life-threatening infection.
Since antibiotics aren’t a sustainable or complete treatment, instead, we need to work with your child’s individual susceptibility and retrain their immune system to “see” the hidden bacteria and respond appropriately. It’s also essential to reduce ongoing inflammation in their brain to reduce tics, anxiety and compulsions.
WHAT TO DO IF YOU THINK YOUR CHILD COULD HAVE PANDAS…
I became a member of the PANDAS Physicians Network because I believe in the right of children with PANDAS to be treated appropriately, starting with the actual recognition of their condition and where their symptoms are coming from (i.e. autoimmune effects in their central nervous system and brain). You can contact this network to find the doctor closest to you who understands and treats PANDAS.
Together with the incredibly diligent and dedicated parents of children with PANDAS, I’d like to open up the discussion and offer more help to children and families who are affected by PANDAS or PANS (a similar condition). Awareness is a huge part of the battle because the sooner kids receive effective treatment, the better the outcomes can be with these kids.
And all kids deserve to be well!
If your child or someone you know may be interested in joining in the conversation about PANDAS or PANS, leave a comment here or contact us to stay in touch and get more support.
P.S. In my next post, I’ll share the references you may want to take with you to your child’s physician’s office to provide the doctor with the necessary background information.