Andrew Baumel, MD
Board Certified Pediatrician
Dr. Baumel is a graduate of Yale University and the University of Pennsylvania School of Medicine. His pediatric internship and residency were done at Children’s Memorial Hospital in Chicago. Dr. Baumel joined Framingham Pediatrics in July 1995. He is Board Certified in Pediatrics. Dr. Baumel is affiliated with Metrowest Medical Center – Framingham Union Hospital.
PANS and PANDAS: An Interview with Dr. Andrew Baumel
Interview by Neuroimmune Foundation director and founder, Anna Conkey.
Thank you so much for taking the time to talk to me today, Dr. Baumel. I’m really interested in hearing more about your approach to treating children with PANS and PANDAS.
I’m happy to talk with you on a topic that has become very important to me since I began my PANS/PANDAS journey over 6 years ago.
So can you tell us a little about how you began treating children with PANS and PANDAS? I know you’ve treated over 100 children now but what opened your eyes to PANS/PANDAS in the first place?
Like many of us who treat children with this disorder my eyes were opened to it by a mother who thought her children might have it. After telling her I knew nearly nothing about it we decided to go to a panel discussion three weeks later put on by Peggy Chapman and NEPANS. The panel which included Dr. Swedo and Dr. Latimer was excellent and I left convinced by what I heard and mostly by the testimony of Dr. Mark Pasternack that this was real and can be treated.
That is great. My understanding is you treat mostly mild to moderate cases and you refer more severe cases to other practitioners but you’ve had good success with the cases you’ve treated. Can you share your approach and treatment protocol with us?
Two months into treating my first two patients I came up with what I consider an excellent two drug cocktail that remains the core of my treatment strategy. I put together one medication from Dr. Pasternack at Harvard and one from Dr. Frankovich at Stanford and then used them together for long courses and it has continued to serve my patients well for over six years. The meds I use are Cephalexin from Dr. Pasternack at 50mg/kg/day divided BID and Naproxen Sodium at 5mg/kg/dose from Dr. Frankovich. The key in my opinion is using these mild medications very long term in a slow and steady way. I do not use steroids, IVIG or Rituximab. I have found that children will usually respond well if they have been caught early or have not developed severe disease. If families wish to pursue those stronger meds or I think they have a severe case I will refer them elsewhere.
And you’ve not had issues with GI upset or other issues using this treatment approach in your patients?
Surprisingly very few patients have experienced GI upset.
What percentage of the children you’ve treated have been more severe and not responded to these therapies? How often do your patients end up needing IVIG, steroids, or second line therapies as described in the JCAP?
Before I did a good job screening patients for my practice I did treat a number of more severe patients and some of them were not NSAID responsive. Of the over 155 patients I have evaluated, approximately five have gone on to other practitioners to get IVIG. Three of the five have seen benefits from the IVIG, but not in a sustained fashion. I think this is due to the intermittent nature of IVIG dosing, but I have not seen enough cases of IVIG administration to consider myself well informed yet.
Do you find it important to check close friends and family members for strep?
Yes, and I often swab family members in my office when I first meet them.
What labs do you typically order when a patient first presents with what you suspect is PANS?
I typically do not order any labs when a patient first presents to me. The medical history I gather both written and oral is much more important. Usually the families come in for the first time with a large file of medical records that includes enough lab tests for me to get the information I need. The most important piece of data to me that I use instead of blood tests is what I call the parent timeline. I will not see a new patient without the parents sending me a very, very detailed history with dates of every medical problem the child has had including every treatment and every response focusing on infections and strange behaviors. I then supplement that with 45 min to an hour of focused questions based on that timeline and the medical record. As I am making a long-term relationship with a new patient I prefer the first visit to not include the pain of a blood draw and I know I will have plenty of time to get any lab tests I need.
As a pediatrician, why do you think so many of your colleagues are so resistant to treating PANS and PANDAS? Is it because they think the cases are just too complex? Do you think most cases can be and should be treated by pediatricians or by specialists?
I do not think complexity is an issue and I do think that this is best treated by pediatricians if caught in the early phases. We are good with antibiotic dosing and management and have strong relationships with the families we treat. We are also able to recognize it quickly. I think the resistance to treating it comes from the negative reaction to Dr. Swedo’s definition of the disorder by the community of Tourette’s treaters. They have been merciless and devastating in their continued attacks on her and the diagnosis and their negativity has had a much louder voice to the larger pediatric community than the voices of the PANDAS treating community. I think that when a Tourette’s MD reads the PANDAS criteria in a very broad fashion all their patients become PANDAS patients and the disease they have dedicated their life to treating simply disappears. This threat has driven their animosity.
What are your words of wisdom for a pediatrician who doesn’t feel confident he or she can manage care for a patient with PANS?
It is easy if you catch it in the early phases and you should not be scared off by all the talk of intensive therapies as in my experience most patients are NSAID responsive and do not require IVIG or the more invasive treatments.
Do you have any advice for families on how to approach their pediatrician if they think their child has PANS or PANDAS?
In a very careful way I would have them ask their pediatrician if they have ever treated a child with infection triggered OCD. You will get a good idea on their willingness to work with you and then I would direct them to an informational website like yours Anna.
Thank you so much for your time today Dr. Baumel. I’m so happy to hear your approach is working so well for this population of more mild to moderate PANS cases. Any final thoughts for us?
If you are a pediatrician and a family tells you that they can’t recognize their previously happy and healthy child due to new onset of strange and out of character behaviors, please do a throat swab for strep and examine their genitalia for the telltale rash of rectal or vaginal strep. If they have it add some naproxen sodium to their antibiotics and see if their psych symptoms resolve.