Some of you know I have a son who haa been personally affected by a condtion referred to as PANS/PANDAS (they are the same condition, except PANDAS results from strep throat). About 1 1/2 years ago, I accidentally stumbled across a pediatric condition I had never heard of: PANDAS. I had a little time, so I thought I would take the time to learn about the condition. Little did I know how much this random webinar I ran across would change our lives.
My son, 7, at the time had every single symptom listed for PANS/PANDAS except one. I had been telling his pediatrician about all these symtoms at every visit, and as concerning as they were, and as well-respected as she is, she never offered any thoughts about what was going on with my son. She kind of took the approach that he would just grow out of it. Well, he was 7 and showing no signs of growing out of any of it, and many of the symptoms were getting worse.
From a young age, my son started showing signs of restrictive eating. He would only eat about 3-4 foods at any one time, He would eat the same meal for breakfast, lunch, snack, and dinner. Prior to the picky eating startng, he would eat whatever we put out for him to eat, and overnight he stopped eating regularly.
My son never slept in his bedroom. When he was young he had stopped breathing and so we had to keep him on a monitor and kept him in our room next to the bed. As he got older, he refused to sleep in his room. We didn't think much of it, and it was easier for us to let him sleep in our room. By the time he was 3, we had to hire a therapist to get him out of our room. He was terrified to sleep in his own room. We got him out, but he was so anxious that first year he would sleep with his eyes open and he would never go into a deep sleep. Today, he sleeps in his room, but he fights us to go to bed, is awake throghout the night, gets up at the crack of dawn, and is red eyed and exhausted when he wakes.
I started talking about signs of OCD when my son was 2. At first it was a joke between me and my pediatrician because he had to have things just so, but at each visit it progressed a little more and a little more. By the time my son was 6, we knew he had OCD (parents, OCD in children generally doesn't look like the stereotype), and he really started having trouble with the intrusive thoughts and fears from his OCD. At 7, he suddenly became terrified of using public bathrooms. Again, the pediatrician had nothing to offer us.
One of my son's most distinct PANS symptoms was urinary frequency. He clearly urinated more than the average child his age (sometime 3-4 times an hour without drinking), and we ruled out every single medical explanation twice. Not a single doctor or specialist had any idea what to even say about the cause or solution.
My son went through the common sensory processing issues. He didn't like t-shirts with tags, the a/c was too cold when it hit his skin, the music was too loud when the rest of us could barely hear it, the food was too cold or too hot, and so on.
When my son was around 5, he started doing this annoying throat clearing noise. I thought it was a year round allergy that just didn't respond to any allergy medicine. What I learned when he was 6 was that it was actually called a throat-clearing tic. Thankfully, after almost 3 years of doing it, he doesn't have this tic anymore.
When my son was 7 in the 2nd grade, it became clear that as bright at he was, he was starting to back slide academically. He was struggling with brain fog, memory impairment, difficulty reading, and difficulty with math and handwriting. Labels started getting thrown at him, and suggestions of psychiatric medications. His self-esteem plummeted as his friends began to tell him he was dumb.
When my son turned 6, our world turned upside down, with the stuff you don't put on Facebook. Our son had what we call rages, and these rages could last 2-3 hours, and start over what seemed like nothing. His pupils would be dilated, and he seemed completey irrational. We were so confused about what was happening because he normally was a very sweet and obedient child. We would have to restrain him so he didn't hurt himself or anyone in the home. We were terrified because he was getting bigger and stronger, and we didn't know if we could keep handling him. Rages are the part of PANS that parents don't speak about often because of the judgment we hear, and the PTSD we feel just trying to manage it. It happens when a child feels like their brain is on fire.
We were blessed that I accidentally discovered PANS and PANDAS because I happen to be taking some health classes that included extra webinars, and one happen to be on PANS. I was completely shocked that my son had all the symptoms of PANS, but we had always looked at them separately and never considered it could be coming from the same source. I went to my pediatrician with this information, and she was willing to run whatever labs I wanted to test him for PANS, but she had no idea how to treat it.
From there, we quickly learned that if you wanted to get appropriate medical care for your child with PANS, you had to pay large sums of money out of pocked and then hope your insurance gave you a small reimbursement that did not come anywhere near the cost of coverage. Our first visit cost close to $4000. It is inconceivable how much we have spent since then.
Since entering treatment for PANS, we have learned a tremendous amount and spent an outrageous amount of money trying to save our son. We have been very fortunate and have had access to doctors and treatments that others have not. Though he has a few lingering symptoms, he is actually doing really well.
If we had listened to the conventional medical system, we would have put him on psychiatric meds and let him fall out of life. Instead, we joined a community of other passionate PANS families and doctors, and as a result, we have a healthy child who is doing well and excelling academically and in baseball. We did this all by addressing brain inflammation, underlying infections, and helping regulate his immune system.
In Georgia, there are sadly only a few doctors who will treat a child with PANS/PANDAS, and those doctors are not available to those who don't have the financial resources to pay for them on their own. Doctors need to be educated, and a great organization called Southeast PANS/PANDAS Association (SEPPA) is doing the grueling work of trying to educate doctors, schools, psychiatrists, CHOA, and others so that more children don't have to suffer.
If you can make a donation to SEPPA, our children won't have to needlessly suffer because our medical system has been largely absent in learning about what is happening with children with PANS. Even though Stanford has a large PANS clinic, the majority of everyday pediatricians have no idea how to recognize PANS, or what to do about it if they do see it. This is not acceptable to me, and I hope not you either.
I hope you will join me in helping the kids in Georgia receive the medical care they should be getting instead of just putting so many of them on psychiatric meds. WE can do better, and with your donation, it really helps.
Also, please feel free to message or call me if you have any concerns about someone you love who is showing signs of PANS or PANDAS.