My son is the clown of our family. He was born with the gift of a cheery, optimistic outlook and a funny sense of humor that’s wittier than most kids his age. He’s the youngest, eight and a half years younger than his brother, and because of his hilarious showmanship, he’s always had a bit of an audience with us.
It’s why it was so startling when he pulled me into his room at bedtime one night to tell me he had been having scary thoughts. Thoughts of suicide.
He had just turned 11.
About a month prior, he had started a new school, but had missed nearly the first two weeks because he woke up on the first day with what turned out to be a strep infection that his little body just could not shake.
He was beginning to get into a rhythm with his school routine and started finally getting back to himself when he told me about the thoughts that were scaring him.
Thankfully, I was able to get my son in for an emergency appointment with a psychiatrist, who treats him for ADHD. He requested blood work, specifically to check for strep antibodies as well as for mononucleosis.
The doctor suspected PANDAS, a pediatric autoimmune disorder caused by strep infection.
I was familiar with this disorder because the son of a dear friend of mine was diagnosed with PANDAS about 12 years ago, when the condition was a fairly new discovery in the medical field.
PANDAS – or pediatric autoimmune neuropsychiatric disorder associated with strep – is a condition where a strep infection causes your body’s immune system to attack its healthy cells in the brain.
The result is an almost overnight change in the child’s behavior, ranging from obsessive-compulsive behaviors to tics to moodiness and depression, the sudden onset of eating disorders, and even a decline in fine motor skills.
Our son’s blood tests showed that he had highly elevated strep antibodies, as well as those for mono, so the truth is that we aren’t sure if he had PANDAS or its ugly big sister, PANS, which is essentially the same condition, but instead of strep, it’s triggered by another infection or other metabolic disturbance.
Regardless of the trigger, there was an overnight personality change in our son, and the antibodies in his blood proved that his body was still fighting two infections from a month prior.
After the psychiatrist notified me, he reached out to my son’s pediatrician so they could collaborate on a diagnosis – which they both agreed was PANS/PANDAS – and an appropriate treatment plan, which was a round of strong antibiotics and close monitoring.
Once armed with the diagnosis, we met with the school administrators to have accommodations added to our child’s 504 Plan. We wanted to make sure he had access to the counselor and school nurse at any time he felt he needed to talk.
The treatment of antibiotics worked and within a few weeks, our son started to return to his normal, happy self, although it would be a few months before we would feel like he was completely back to himself.
We were lucky to have medical professionals willing not only to work collaboratively on behalf of our son, but who were willing to listen to me as a mother. Doctors who believed me and – despite never having diagnosed a case themselves before, were willing to investigate further and start treatment on my son.
If you have noticed sudden distressing behaviors that started over the course of just one to three days, make an appointment with your child’s doctor right away and request blood tests to check for Antistreptolysin O (ASO) titer and the Anti-DNase B antibody.
Both are antibodies that your body produces in response to a strep infection.
It’s important to note that while searching for elevated levels of strep antibodies is an important piece of criteria to help diagnose your child, it’s only one piece of a bigger puzzle, because a different illness could be the reason for an onset of PANS, and because the illness manifests differently in each person.
The most important step in getting treatment for your child is to trust your gut as a mother and if your doctor pushes back on what you believe to be PANS or PANDAS, find another provider. One who is willing to take the time necessary in investigating whether your child has this rare and complex illness.
I would like to thank psychiatrist, Dr. Christopher Masi, MD, and pediatrician, Dr. Gabriel Millar, MD, for their thorough collaboration in treating my son.
For further reading on local moms’ experiences with the illness, hear from this Austin Moms writer here, or how doctors didn’t believe this local mom, dismissing PANDAS as a made-up diagnosis, which delayed his treatment.
Thank you for sharing awareness around Pandas. Our son Nick was amazing in every way. He was 18 when he took his own life. We had never heard of Pandas or Auto immune Encephalitis until his death. Nick was, to my knowledge the first to have his blood tested for elevated antibody markers, during an autopsy. It was concluded because of the elevated markers present in our sons blood and symptoms we pieced together from all his friends and family that Nick had Pandas or Auto immune encephalitis and this disease caused his suicidal thoughts and actions. Mother’s need to fight to get answers and treatment. This is real. Sadly, we have to live without Nick because we didn’t know. RIP Nick Makin
Oh how my heart hurts for you, Liane. I hope we can continue to grow awareness around this illness in Nick’s memory. Thank you for sharing his story. I’ll hold you and your family in my thoughts, Liane.
I need help! I think this is happen with my 11 year old boy. He had a blood test and ASO comes back with 239. His pediatrician told me that everything was normal 😳However, I had a feeling that NO, ITS NOT. I am desperate as I read the symptoms and looks like I am reading my son. Tomorrow We have a neurologist and I changed his pediatrician to a new one. I need help! I need an advice from someone that has been there. What kind of medication we need? HOW CAN I HELP MY SON? Please help me!
I am so sorry to hear this, Lily.
Visiting with a neurologist could be helpful, because they can rule out any other issues that may be going on. Make sure when talking to them, though, that they are open-minded about the possibility of PANDAS. Your son may not have PANDAS, but what you DON’T want is for a doctor to say that isn’t PANDAS based on their disbelief in it being a real diagnosis versus medically ruling it out.
One good thing is that Governor Abbot created a PANDAS Task Force here in Texas back in 2020, so it is finally getting some credibility as a real diagnosis within the medical community.
Here’s what I suggest if further testing shows that your son does have PANDAS:
• Obviously follow the recommended treatment they prescribe
• Visit https://pandasnetwork.org/find-help-nearby/ because you are going to want and need a support network of people who understand what you and your son are going through. The symptoms appear overnight, but once treatment starts, the symptoms are typically slow to subside. Many, many families endure a long, emotional road of healing before they start to feel a return to normalcy.
• Search for PANDAS support groups on Facebook (there’s one for the Austin area: “Austin PANDAS/PANS Support”) for the same reason: to help you see that you aren’t alone and so you can see how others are getting treatment.
You’re doing the right thing by doing research on this and for trusting your gut that something is off – mommas know when things aren’t right, even when doctors think they are. Just keep loving on your boy and making sure he knows that you’re working to find the answers that will help him feel better. I wish you and your son the very best, Lily.