Ep. 49: Successful PANDAS Treatments Remain Highly Controversial
My previous episode focused on the difficulty in making the diagnosis of PANDAS. Taking this topic to the next step, I want to focus today on management options. However, once the diagnosis is confirmed, the PANDAS treatments available remain controversial.
I need to stress that I am an ENT surgeon and am not directly involved in many of the PANDAS treatments that I will be discussing. However, when these patients make it to physicians in my specialty, it usually means that previous PANDAS treatments have failed.
In fact, to prepare for this episode, I asked for input on social media from physicians around the world. I wanted to get their impressions about the diagnosis and treatment of PANDAS because the syndrome is so complex with a wide range of symptoms. Many physicians voiced their own frustrations with the struggle to confirm the diagnosis; consequently, PANDAS treatments are often not readily started. This leads to many frustrated parents feeling there is a delay in care.
Trust me when I say that physicians WANT to cure or at least improve patients’ symptoms.
PANDAS treatments are impacted by diagnosis difficulty
Some frequent comments by physicians about PANDAS diagnosis include that it feels they are traveling down a rabbit’s hole or opening Pandora’s box. The practice of medicine is an art and is often based on experience. But it is always rooted in science. Before treatment can begin, a diagnosis with some degree of certainty has to be made.
PANDAS is a clinical diagnosis. With no specific tests to accurately prove its presence, many children must wait until their symptoms fit the criteria before treatments can be recommended.
The uncertainty in making the diagnosis often leads to repeating or ordering more expensive tests that drive up the cost of care. Insurance companies have criteria that need to be met before they will pay for medical services; consequently, many PANDAS tests are not be covered.
Most physicians will not continue to repeat testing for a diagnosis that is made based on clinical symptoms. Self-proclaimed PANDAS specialists now recruit these difficult patients, who often travel thousands of miles to receive care. These physicians spend incredible amounts of time counseling and discussing possible testing and treatment options. Unfortunately, the visits are not adequately reimbursed by insurance; therefore these specialists only accept cash payments. The initial visit may cost $1000 or more. One mom reported spending over $15,000 to cover the costs of PANDAS treatments.
A sample of extensive blood testing that could be ordered is found here. It is reported that blood testing for Strep can be negative even in children with a culture-proven Strep infection. Some PANDAS experts use this information to support proceeding with PANDAS treatments without evidence of Strep.
Nevertheless, most physicians agree that without a documented Strep infection, PANDAS treatments are not recommended.
Which patients should receive PANDAS treatments?
Let’s be clear, NO PHYSICIAN wants to see a child suffer! The sooner physicians can diagnose and treat PANDAS, the better the chances are that the symptoms will go away.
But without clear scientific proof, physicians will evaluate the available PANDAS research and come to different conclusions about the best course of treatment. I believe it depends upon a physician’s personal experience in order to decide if they choose to proceed with caution or action.
Choosing “caution” is the most common option for physicians because it follows our Hippocratic Oath that we take upon graduating from medical school: First, do no harm. Essentially, this means we need to be sure that our actions are not going to cause more harm than good.
The physicians who choose “action” may opt to fill a void because science is not black and white and decide to treat things we cannot prove. It is a stance they take knowing that every treatment has possible downsides, toxicities, and side effects.
We usually only take those risks when scientific evidence supports it. Because many parents are frustrated and anxious to try any potential treatment, a limited number of physicians will proceed with PANDAS treatments in kids without proven Strep infections.
Additionally, most physicians, including myself, will only treat children when they meet the criteria that we have for all of our patients. If a Strep infection is found, it is treated with a standard protocol. If recurrent Strep tonsillitis occurs, well-established treatment options exist and are recommended. These treatments may become effective PANDAS treatments, but they are not recommended if the PANDAS neurologic symptoms exist without the proof that Strep is present.
The most common PANDAS treatments considered
Physicians do not usually recommend treatments that have risks when the diagnosis is doubtful. Or when the treatment is known to not be useful, like when patients with viral illnesses who want antibiotics. Antibiotics do not treat viral infections. Period. Hard stop. Physicians understand that patients feel better if we “do something”, but that is not how we approach medical care.
There are several main categories for PANDAS treatments. As with most things, the escalating treatments also have escalating risks.
PANDAS treatments involve addressing both physical and psychiatric symptoms. To start, physicians focus on making sure the Strep infection is completely gone. However, parents will also need to work with a licensed mental health professional familiar with OCD and PANDAS treatments.
Also, preventing Strep is always better than treating Strep and its complications. Parents can teach kids not to share eating utensils or drinking glasses. They should also avoid touching their eyes and face whenever possible. Basically, parents should teach kids good hygiene practices. Washing hands is also an extremely important public health strategy. I am THAT proud mom who shares her daughter’s article about the Power and Privilege of Handwashing, written to celebrate Global Handwashing Day.
The treatment for a Strep infection begins with antibiotics. Strep is an extremely common childhood infection that responds well to antibiotics. When PANDAS symptoms are present, many parents note a significant improvement in the neurologic symptoms within one week.
Most infections are successfully treated with a single course of antibiotics but a second course may be required if ongoing symptoms are present. However, long term antibiotics. for any problem, can be associated with increased risks and complications. A seasoned pediatrician has expertly discussed in a blog post the importance of being “antibiotics aware”.
PANDAS specialists have been known to prescribe antibiotics for months or years. There is no evidence that this treatment protocol is effective, but there is plenty of evidence about the long term problems these antibiotics can cause. Parents need to remember that the problem may have started with a Strep infection but ongoing PANDAS treatments need to address the other symptoms.
PANDAS symptoms occur because of an abnormal immune response to a Strep infection. While treating the infection, some physicians also choose to treat the inflammation that can be present. In effect, physicians may try to calm the immune system with steroids or nonsteroidal anti-inflammatory drugs (NSAIDs) like Motrin.
You guessed it…there is no proof this has any significant impact on the long term results of PANDAS.
Treating behavioral symptoms
The PANDAS psychiatric symptoms may improve when antibiotics are started, but usually, they still need to be treated separately. OCD is generally treated with cognitive-behavioral therapy.
Medications are also used to treat OCD and include a special type of antidepressant. Other controversial treatments include steroids, such as prednisone. But, steroids can make tics even worse. In addition, when steroids do work, they can only be used for a short period. Currently, steroids are not routinely recommended for the treatment of PANDAS.
Immunoglobulin therapy (IVIG)
Some kids with severe PANDAS symptoms show no response to medications or behavioral therapies. These kids may have a hard time functioning and may become a danger to themselves.
These are the patients where physicians begin to consider the most extreme treatment options to reset their immune systems. One of these therapies is IVIG. This treatment involves patients receiving treatments in their veins with blood plasma from at least 1000 donors.
This therapy is generally reserved for patients with specific diseases where monthly infusions have been proven to improve the disease. This is not the case with PANDAS, thus, this treatment has not been designated as an approved treatment for the syndrome.
But anyway, the goal in this situation is to “boost the immune system” by flooding the body with healthy antibodies and diluting the harmful antibodies which are causing the symptoms.
As you can imagine, collecting blood from 1000 people to create a course of this therapy is extremely expensive. And of course, there are many risks associated with it that can be found in this review article.
This treatment is another extreme measure used to treat children with severe PANDAS symptoms. When none of the other mentioned treatments are successful, this technique allows patients to have their own plasma is removed and replaced in a process similar to kidney dialysis. The goal is to remove the antibodies that continue to cause symptoms.
While some clinicians report success with these extreme treatments, there are no studies confirming that they work. There is significant harm that may result from these treatments which further explains why most physicians do not recommend these treatments.
Ahhh. Finally on to the treatment that brings an ENT surgeon to talk about PANDAS. Although many people do not frequently discuss this option, tonsillectomy falls into that category of extreme PANDAS treatments.
Trust me when I say that I only see the parents who are at their wit’s end and ready to try anything to help their kids.
Tonsil disease is well known. It is also known that Strep bacteria may hide in the tonsils and resist treatments. However, there are clearly published indications for the effective use of tonsillectomy. If there is an indication for a tonsillectomy, with or without PANDAS symptoms, this surgery may be recommended.
Nevertheless, a small study in 2015 suggested that kids who did not respond to antibiotics might benefit from a tonsillectomy. Although tonsillectomy is a commonly used treatment option for recurrent Strep tonsillitis, it is not an accepted treatment for PANDAS.
Just to elaborate on potential future research, there is apparently some unpublished data from Georgetown which is reported on the PANDAS Physician Network website. Physicians removed tonsils in kids and checked the bacteria found, comparing PANDAS and non-PANDAS kids.
Interestingly, Strep was found in the tonsils of non-PANDAS kids but not in the tonsils of PANDAS kids. The kids with PANDAS had tonsils that grew more Staph as well as other bacteria including E Coli, Pseudomonas, and Serratia. (These are huge names that mean nothing to you other than these PANDAS tonsils were filled with a variety of bacteria, but not Strep).
Sooo, what does this mean? It is unclear, but it could simply be a confirmation that a wide variety of bacteria can cause similar neurologic symptoms. And the bacteria would each respond differently to antibiotics, which highlights another reason why long term antibiotics would not be useful.
What is the prognosis with PANDAS treatments?
Symptoms tend to slowly get better over several months once the strep infection clears, but there may be ups and downs.
PANDAS is likely to come back if your child gets strep again. Meaning, kids are highly susceptible to recurrent episodes because they have become sensitized. Sometimes all it takes is exposure to the germ.
So remember the tips I shared about prevention with good hygiene habits, hand washing, changing toothbrushes often, and avoiding sick people.
Some people also recommend having other family members tested for Strep because it is possible to be a Strep carrier when there are no symptoms.