PANDAS and Homeopathy…Our Journey

They say that you don’t find homeopathy, homeopathy finds you…

And that couldn’t be more true in my case. I had never even heard of homeopathy 4 years ago. It wasn’t until one of my children was diagnosed with PANDAS that I found a homeopathy group on facebook specifically for PANDAS and I started researching.

To explain my story, I will go back a few years. My oldest son, Luke, was 9 years old at the time. A happy, healthy 3rd grader. Seemingly out of the blue he started having anxiety about going to school. I didn’t think much of it at the time and his pediatrician put him on anxiety medicine. In my gut, I thought a 9 year old on anxiety medicine doesn’t seem ok, but I pushed it aside. He continued to get worse, to the point he wasn’t going to school at all, complaining of stomach pain constantly, and just laying around the house all day. You know when you have a child that is trying to get out of going to school saying they are “sick” and when you finally say, “ok you can stay home” and then just a few minutes later they feel just fine? That wasn’t Luke. And that’s when I knew something was wrong. He didn’t play even if we let him stay home from school or on the weekends. It had gotten to the point that we put an inflatable mattress in our living room and that is where he laid all day and night.

I took him to the doctor countless times…they told me he was constipated and he had anxiety. Those were the only two answers. We were in an out of the ER so many times I can’t even count at the beginning of 2020. He even got an ambulance ride to another town when they told us he had intussusception. Turned out he didn’t and we were right back at square one. We saw GI specialists, had endoscopies, colonoscopies, tons of blood work done and no one could figure out what was wrong with him. Constipated was their only diagnosis…except he wasn’t.

Then one day he woke up and could barely walk. He was off balanced, pigeon toed, and looked like he had been up drinking all night. In addition, he started having tics and twitches in his upper body. I called his pediatrician and demanded something be done. We got directly admitted into a children’s hospital. They ran more tests, did an MRI…everything came back normal. The only thing he had was strep. One of his doctors in the hospital mentioned that strep could cause twitches, but should go away soon because they put him on antibiotics. As soon as that doctor left the room I googled tics and strep and PANDAS was the first result.

I remember sitting in that hospital room reading the signs and symptoms of PANDAS and having a lightbulb moment. I thought, “This is exactly what he has.” When my husband came back into the room, I said I know what’s wrong with Luke. I showed him, and when the doctor came back I asked her about PANDAS. She said it was unlikely that he had PANDAS, but he needed to see a psychologist because of his anxiety. I asked every single nurse that came into his room if they had heard of PANDAS. Every single one of them said no. PANDAS as a diagnosis has been around for less than 20 years…which means that the healthcare professionals (at least most of them) haven’t fulled adopted or accepted it.

He was being discharged the next day, and I pushed for blood work to check his titers. There is no diagnostic test to prove PANDAS, it is a clinic diagnosis. However, there are titers you can check. The neurologist agreed to do the bloodwork and we went back home to wait for the results.

In the meantime, I found a doctor in Chicago that was a specialist in PANDAS. We got an appointment shortly after Luke got discharged. Long story short, he took one look at Luke and confirmed he had PANDAS. The bloodwork also showed high strep titers as well. He said the first step was to get Luke’s tonsils taken out and if that didn’t solve the problem, the next step was IVIG. At the time, I was comfortable with taking out his tonsils (today, I would have tried to save them), but I wasn’t comfortable with IVIG and that’s when I started researching.

Just a day after we got Luke’s diagnosis, the neurologist that saw him in the hospital called. She asked how he was doing and I told her not well. I told her we had gotten a diagnosis of PANDAS. She said that was why she was calling. She didn’t believe in PANDAS, but Luke definitely had it. I can remember just being mind blown. In one sentence you just said you don’t believe in this disease, but my child has it.

I can’t even remember how I found the homeopathy group I did, but when I did I dove in. I knew nothing and honestly it seemed too good to be true. I remember telling my husband I wanted to try it first and if it didn’t work, we would do IVIG. That was 3 years ago. Homeopathy has healed my children, brought them back to health, and brought them back to me.

Looking back to when Luke started having anxiety, he had strep at the time. And the whole time he had stomach issues, he was also positive for strep. Despite mega doses of antibiotics, he always tested positive for strep. I had never heard of PANDAS and didn’t know the warning signs. But when I looked back, they were all there. I fully believe the numbers of kids who have PANDAS is higher than it is. 1 in 200 kids has PANDAS. If I had ignored my mom gut, Luke could have been misdiagnosed and ended up on many different psych drugs.

Luke’s PANDAS symptoms started as what seemed like anxiety, which led into tics/twitched, then periods of extreme restlessness where he said he felt like he couldn’t control his body, and even further into full blown rage. At 9 years old, he would flip our leather couches over and push them around our living room. For anyone who knew my son, they were shocked. Luke didn’t even talk to anyone in school until the very last day of Pre-K…he was that shy. He lost his ability to do math and also his ability to write. He refused to go to school so we took him out and focused on helping him getting better. Because he was in a really, really bad place.

If you noticed, I referred to homeopathy healing my children. About 5 months after Luke was diagnosed with PANDAS, my oldest daughter Claire was diagnosed as well. I knew the moment she wouldn’t get out of the car one day at school drop off. She had a panic stricken look in her eye and was hyperventilating. She was my kid that has strep at least once a year…so knowing what I knew, it was no surprise.

I believe everything happens for a reason, and while there are many things I still can’t figure out, I think this happened to lead me to homeopathy and ultimately a whole new career path. PANDAS can absolutely tear a family apart. The mental and emotional tole it takes on families is astronomical. These poor kids (often very young kids) who have no idea what is going on and parents are often left at a loss as to what happened seemingly overnight to their child. PANDAS can take a child and flip a switch overnight.

My mission in starting my own practice is to help as many families as I can who have been effected by PANDAS. I watched in awe as homeopathy brought my kids back to health, ameliorated their symptoms, and eased their body, both mentally and physically. It has been a roller coaster, as most healing from deep chronic issues is, but I wouldn’t take any of it back or change it. I know my kids truly are healing, for good.

If you’d like more information on PANS/PANDAS check out https://aspire.care/ and https://pandasnetwork.org/