Below are some of the questions I field the most often from concerned parents wanting to know what we did or have learned. I’ll add to this list from time to time as new, great questions are posed and sound answers are gathered.
What is PANDAS/PANS?
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) occurs when strep triggers a misdirected immune response which results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life-changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more.
In some instances, the onset of these symptoms will be 4-6 months after an infection.
When strep cannot be linked to the onset of these symptoms, the child may be dealing with PANS (Pediatric Acute-onset Neuropsychiatric Syndrome).
These two disorders are very similar in presentation; simply put strep is the cause for PANDAS and when one or more of a litany of other culprits is the trigger, it is referred to as PANS.
It is estimated that PANDAS/PANS affects as many as 1 in 200 children.
A layman explanation for friends and family:
When a person gets sick, his/her immune system creates antibodies to attack the illness. In a child with PANDAS or PANS, the created antibodies instead mistakenly attack their brain. Because of this attack and the resulting neurological symptoms, it can very easily appear to be mental in nature, but this is NOT mental illness — to oversimplify it: an infection (that you may or may not even realize the child is fighting as many PANDAS kids do not show typical symptoms) needs to be eradicated and then the immune system’s haywire response calmed down. If all is done timely and properly, the child can return to their previous healthy self.
Does PANDAS/PANS go away? Is it curable?
This one is tricky to answer. A PANDAS/PANS flare can be alleviated greatly and often completely healed when treated properly = infection eradicated and immune system calmed. The actual immune disorder itself, it is hoped*, goes away with a few things:
*there is not a concrete answer here because there currently isn’t enough natural history to confirm this; in other words, they haven’t been studying/following patients long term with this disorder long enough to prove that it “goes away”
-Age: the thought is that the reason these auto antibodies are able to make their way to the child’s brain in the first place is because the blood-brain barrier isn’t fully formed until after puberty. So it is promising that after puberty, when both the blood brain barrier should be closed and the maturing child should get sick less often and their immune system respond to illness differently, it won’t be as much of a risk to get into a flare.
-Treatment: in an ideal situation, the child’s immune system is retrained to respond accordingly to sickness (typical symptoms you’d expect), rather than overreact and go haywire. This retraining can come from IVIG treatments (sometimes multiple), diet changes (balancing yeast and bacteria, for instance and/or removing inflammatory foods like gluten/dairy), supplementation of vitamins and anti-inflammatories like Quercetin, Tumeric, etc.
Can a teenager/young adult have PANDAS/PANS?
In my personal experience meeting moms from all over, each time I hear of an older teenager/young adult suffering from this, it is because it was not caught at the younger age and never treated to begin with. Typically, the parents reach out to me because they are just learning of PANDAS and having learned about it/read all the symptoms listed together, they realize THIS is what has been ailing their son/daughter since young childhood.
Many times the parents were treating individual symptoms because they didn’t know any better/hadn’t heard of PANDAS. So for instance, they’d fight through the separation anxiety, see a Tourette’s doctor for the tics, a food specialist doctor for the “eating disorder” and assume the anxiety simply accompanied having to deal with all this. When they see all these unrelated symptoms listed for the first time together describing PANDAS, they realize what was missed and try to treat accordingly after all those years. THIS is why awareness and doctor knowledge on this subject is so important!
What is IVIG?
In short, it is healthy donor antibodies; when a child’s body is flooded with a large amount of these (see here for the important protocol for PANDAS IVIG), it essentially is telling the child’s own antibodies they are no longer needed. Because, remember, it is the child’s antibodies that are going haywire and attacking the brain instead of infection. Ideally, you will have determined the infection and treated/eradicated that, then IVIG helps to reset the immune system. Keep in mind, it is an extremely slow response. In rare cases (I’ve only heard of one in over 40 moms I’ve met), the IVIG helps the symptoms to remit (go away) as quickly as they came on, sometimes within a few days of IVIG. However, it has been our experience (and is most), that you won’t notice hardly any difference until at least week 4 after IVIG. For us, the real improvement starts to come at week 8 and then our son slowly, slowly gets a bit more like himself. By week 14 he is usually back to his old self again!*
We had IVIG in April 2016 that completely treated his first flare.
Again in October 2017 that completely treated his second flare.
Again in January 2019 for his third and most recent flare that inspired this website. Sometimes, IVIG will actually cause the children’s symptoms to get worse before getting better, because you’re mopping everything around and giving the system something to clean up; this, unfortunately, did occur this most recent IVIG and the first week home from IVIG was the absolute worst. Thankfully, I’ve read of this happening and was confident IVIG worked so well for my son in the past, that we were frightened. It wasn’t any less heartbreaking, though. We showed our son articles describing this possibility to assure him it was somewhat expected. Just as described above, it was really 8 weeks before we really saw improvement and by 14 weeks we felt he was doing great. HOWEVER, it has to be noted that something else different occurred this most recent time, as well. After getting to nearly 90% back to himself (April was a great month), towards the end of the first week of May, he started having severe anxieties again, especially at bedtime or when we’d be apart (separation anxiety would prompt his other intrusive worries). He even admitted he now only felt 60% better. This concerned us because in the past IVIG has always gotten him back to 100%, even if it did take approximately 4 months to do so. We’ve also always been curious to run a Cunningham Panel after IVIG and have never done so. So we ordered one to be run on May 8th to see if there is any remaining inflammation possibly warranting another dose of IVIG. As of May 21st, 2019 we are still awaiting those results.
Do I have to give my kid prophylactic antibiotics?
Like all things PANDAS-treatment related, this is a very personal decision. We absolutely do not. In fact, we haven’t treated with much antibiotics at all, but that also partly has to do with the face that our son is sub-clinical, meaning he does not show regular symptoms of illness (fever, vomiting, etc) and because PANDAS symptoms can arrive weeks-months after an illness, by the time his arrive, he tests negative for infection and we don’t know what triggered his flare to begin with, with the exception of the very first flare in which we had his tonsils removed to help/double check for harbored strep that was showing up negative on tests and actually ended up finding staph infection!
I am not educated enough on prophylactic (preventative) antibiotics to have a real opinion here and know that many parents have chosen this route; you can find their info and opinions readily available on many facebook pages and blogs.