I helped my son heal from PANS PANDAS, and there is hope.
A Rough Pregnancy and Birth
He was born preemie at thirty five weeks. I had a really rough pregnancy. I had rheumatoid arthritis, which flared like crazy. I was pretty immobile, so I had to go on thirty milligrams of prednisone.
He Wasn’t Hitting Milestones
Everyone’s like, “You’re crazy. It’ll come.” I said, “No, that’s not normal.” And when his speech did come, it just was hard. Right? It was hard to get out “Hello”. At 18 months, he said, “Mama.” He was late to crawl, refused to crawl, wanted to walk.
The Overnight Change
So all those things added up when he was three, three and a half, we’re getting ready to go on vacation to the mountains in North Carolina. And that week, looking back, he had a really hard week. It was like he was super emotional and just weird. And that week, I’m like something’s going on. Well, we got to the mountains, and he woke up the very next day with 103-degree fever that lasted for seven full days of like 101 to 104.
And so on the seventh day, he woke up and the fever was gone. But it was an immediate, immediate difference. He woke up a different child. He was spastic. He was honestly possessed. That’s the best way I can describe it. And it was like, one day, he’s fine. And the next day, your kid is… I said I would not cry. And I’m four minutes into this interview. You don’t talk about it for such a long time. And then the hell comes back of like, whoo. Hello? It was a lot.
Have You Ever Heard of PANS?
So this went on for a few days after our friend was supposed to be visiting, joining us for the weekend, and she happened to be a PA (physician assistant). And I called her, I said, I don’t know if you can come. This is, I’m telling you, it’s really weird. Like, he’s so aggressive. I don’t know what’s going on. I sort of described my symptoms and she’s like, Have you heard of PANS? I think you need to look at that.
The ER Doctors Didn’t Believe Her
Great. Let’s run a panel, but I’m telling you, like, he needs to be admitted. I want more tests run.
And they stepped out. And when they stepped out, he just happened to have one of his episodes, which involved tearing the entire ER room apart. So it was awful to watch and it took, oh my gosh, four nurses to come in to sedate him. And then the doctors came and said,
“Oh my gosh, I’m so sorry. We thought you were a crazy mom. You’re not lying. You can’t go back. Something is wrong with his brain.”
It Was Mania
So we were there for six days. We got a ton of testing. They all kept coming back, “Nothing’s wrong. We don’t know. It’s not PANDAS. That’s not that’s just not a real thing. And I think you should go back to St. Pete. Let’s order a spinal so we can see if the CSF (cerebrospinal) fluid will do that for you. And then we should get a brain MRI.”
But you know all those things take time. So this was like the fifth day, and he got a spinal tap. Thank goodness for that spinal tap because that gave us our official diagnosis. When the Mayo results came back, that was positive for pediatric autoimmune encephalitis (PANS). That was really helpful. That’s what got me coverage with IVIG. That’s what gave me our Medicaid coverage, our everything was from that single thing. So the whole hospital visit was like, well, at least we got out of it.
“I Could Get Fired for Telling You This”
So I had one doctor there. This doctor came in and said, “Listen, I could get fired for telling you this. I think your kid has PANS.” He’s like, “I do think it’s a real thing, but this hospital doesn’t believe it, and no doctor will stand here while being watched by others and say, let’s give you some steroids. I think you should go back to St. Pete where they I’m sure you’ll find a provider who believes it. And you should get treatment, and you should pay for it and find the best doctor you can because that’s what he has.” And I was like, “All right, appreciate you. We’re gonna go.”
Tackling PANS
So that’s what we did. We did IVIG, we uncovered mold, we treated, we uncovered Bartonella and Babesia, we did months of antibiotics. We did supplements and more supplements and more supplements and diet, Everything worked. It really did.
I don’t know if it was the timing of things. I don’t know. It’s hard to say like, oh, one thing worked more than the other because it was all the little, not little things, they definitely were Little, but all the things and all the tests were such an important part of the whole puzzle.
Colton Today
Colton: “My name is Colton. I’m six. I like to play with my brother and ride my bike. Also, draw and build LEGOs.”
My Highest High
Seeing him at school. I feel so grateful that we’re on the other side. Because for so long, it was like, we’re not gonna get here. There’s no way in hell. We’ve done everything, and it’s always when you feel like you’re at the end of your rope and I don’t know how much more money we can spend. I don’t know how many more doctors we can see. Nothing’s changing, right?
For so long, I just just wasn’t sure. I knew that we would be okay. I really felt like my faith carried me through and I’m like, “Well, it’s just gonna be a different life.” But I knew we’d be okay. I just didn’t know that he would be able to live the life that he does.
My Message to Other Moms
I remember reading so often, “You’re not alone, and you will get to the other side” and I just thought, “You liar. You don’t know.” I am alone, though, because it feels like you’re in this bubble. No one in your close circle knows because no one’s gone through it.
If you have the power and capacity to not stop, to just keep digging. Maybe you feel like there’s something missing. Ask. Ask another question. Keep digging. If if there are more tests to do, do the test. It’s all worth it in the end.
“I Hope You Feel Better Soon”
Colton: “I used to feel bad, but now I feel great. I hope all all who are out there that have infusions feel better soon.”
Learn the Top Five Things Colton’s Mom Did
Click the button below to learn more about what Colton’s mom did to help him reverse his PANS/PANDAS.
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Resources
Books
Blaylock, Russell L. Excitotoxins: The Taste That Kills. Health Press, 1996.
Cahalan, Susannah. Brain on Fire: My Month of Madness. Simon & Schuster, 2013.
Campbell-McBride, Natasha. Gut and Psychology Syndrome: Natural Treatment for Autism, Dyspraxia, A.D.D., Dyslexia, A.D.H.D., Depression, Schizophrenia. 2010.
Chutkin, Robin. The Microbiome Solution: A Radical New Way to Heal Your Body from the Inside Out. Avery, 2016.
Lambert, Beth, et al. Brain Under Attack: A Resource for Parents and Caregivers of Children with PANS, PANDAS, and Autoimmune Encephalitis. Answers Publications, 2018.
Maloney, Alison Beth. Saving Sammy: A Mother's Fight to Cure Her Son's OCD. Broadway Books, 2010.
O'Hara, Nancy. Demystifying PANS/PANDAS: A Functional Medicine Desktop Reference on Basal Ganglia Encephalitis. DPWN Publishing, 2022.
Weiss, Melanie S. In a Pickle Over PANDAS. First Edition Design Publishing, 2015.
Websites
New England PANS/PANDAS Association
Videos
PANDAS and PANS with Amy Joy Smith, NP on BetterHealthGuy.com
