Talking to your pediatrician about PANDAS
by Tanya Murphy, MD, MS
In many cases of PANDAS, the change in your child can be so dramatic, that this change is very frightening. Sometimes the change is at the level that it is less dramatic but you notice behaviors that are not typical of your child. With presentations that are less extreme, the decision to discuss this change with teachers, family and pediatricians can be met with self-doubt as you try to weigh if this is just normal development ('a phase') or perhaps a stress reaction. Parents' intuition should not be dismissed. Have your child evaluated because your pediatrician may be able to determine if a medical illness is responsible for the changes in your child. However, don’t rely solely on the physical examination to give your doctor all the clues. Let the pediatrician know that this change is out of character for your child and detail any areas where your child may have had a decline in previously acquired skills (trips more, handwriting is worse, wetting the bed, etc). A thorough accounting of your child's symptoms can help them determine what additional information is needed and what type of testing should be considered. A referral to a specialist such as a neurologist, immunologist, or a psychiatrist for additional evaluation and treatment may be indicated.
First, it’s good to organize your thoughts, keep a diary of the changes in your child’s behavior, moods or anything else you feel is not normal behavior and worries you. Don’t rely on your memory while at the doctor's office. Write down all your questions. Think ahead about what you would like from your appointment. Use the face time with your pediatrician effectively, by having the questions that are most important to you written down.
Make sure you document your child’s illness and treatments as well as dates in which you noticed symptoms. Your pediatrician will have many of these but also include the self limited illnesses like colds and diarrhea. Take into account any sick contacts at school, family or extracurricular activities. Note if there is any family history of recent illnesses in family members that may have exposed the child to an infection even though the child may not have had significant signs of an infection.
Think back if you had similar concerns in the past, this could help determine if there could be a pattern to the behavior. Rate the severity of your child’s symptoms as well. For example, rate the worst episode as a 10, no symptoms as a 0, then any other episodes anchored by this range. Note if the behaviors completely went away or just got better.
Put together a family history it can be useful to make notes about family members that have OCD, tics or any other kind of psychiatric illness even if they have not been officially diagnosed. Documenting if there is a family history of autoimmune diseases like Lupus, Hashimoto’s thyroiditis, Sydenham’s chorea or Rheumatic fever is also helpful.
Bring in information about PANDAS. The relationship of strep illnesses to OCD is still not widely accepted in the medical community so realize that your child’s pediatrician may be skeptical about associating the behavior changes in your child with a recent infection. Print out a hard copy of the PANDAS fact sheet. Your pediatrician may not be familiar with PANDAS, they may not have seen it before and they could be more receptive to investigating more on the subject if you provide some tangible information. You can help educate your doctor on the subject so don’t be shy about showing what you have researched. If your pediatrician is familiar with PANDAS, ask for any resources they may have for information or support.
Here is an example of a parent’s log.
Sam is a 6-year-old boy. History of behaviors:
Blinking a lot, scrunching up his nose repeatedly. Sniffing hard 3 times
Noticed when I picked him up from school. When I asked what was wrong, he said he couldn’t stop.
Throat swab. Positive strep test in doctors office
Treated with 7 days of 500mg amoxicillin
12/06/10 off amoxicillin
Blinking has decreased still nose scrunching and sniffing hard
Teacher tells me 2 kids in class have strep throat
Teacher also complained about him being difficult in class.
Sam has big fight with sister because “she moved his toys”; He had been moody and cranky all day.
That night he rearranged his stuffed animals and could not go to bed until they were “just right”. If we stopped him, would scream, cry and hit anyone around.
Every night he did this until 1/15/11.
Blinking, nose scrunching and sniffing more than 20x in an hour while watching t.v.
Worst I’ve ever seen him tic.
This night he was in his room organizing his toys over and over for 3 hours. Tried to stop him and had another meltdown!
Doctor’s visit. Positive rapid strep test and culture
Treated with amoxicillin 500 for 7 days.
01/16/11 off amoxicillin
If your child has experiences a sudden onset or increase of tics or OCD, there are tests they can perform to determine if your child has had a strep infection like a rapid strep test or throat culture. There is no PANDAS specific test. Measuring antibody levels to streptococcus only helps if levels are drawn at the time of onset/flare up and repeated 6 to 8 weeks later to assess for a rise in the antibody levels.
Clinical signs that help to differentiate common respiratory infections
Signs of Group A Streptococcal Illness
- Sore throat without cough or runny nose
- Fever (alone or with sore throat)
- Vomiting (young child)
- Perianal or vaginal redness (young child)
- Red fine sand paper rash on trunk
Signs of Mycoplasma or viral infections
- Sore throat with cough
- Stuffy or runny nose