Success Story: Reese Healed from PANS/PANDAS and OCD!

I helped my daughter heal from PANS/PANDAS, and I just want other families to know that there is hope.

When Reese was first born, within hours, maybe maybe the first day or so of her being born, she had swollen lymph nodes on the back of her on the back of her neck. I brought her to her doctor and I said, “Hey, this is kind of odd. What do you think?” And he was like, “Oh, that’s abnormal. We don’t normally see that on an infant.”

Then the Coughing Began

I brought her into her pediatrician and her pediatrician said, “She’s too young to diagnose her with asthma, but we’re going to call it obstructive airway disease.” I had to start giving her nebulizers twice a day, pretty much from four months old onward. She, within that first year of life, had numerous ear infections. She had complications with her asthma. When she was 18 months old, she was hospitalized with RSV for a few days and had a respiratory therapist.

She’d had probably nine ear infections, just back to back to back. And so before she was 18 months old, she probably had at least 12 rounds of antibiotics.

“She’s Just Spirited”

I started noticing an uptick in some little quirky behaviors. She would have these little rituals, these little kind of transient tics that we would call them.

And I took her to her pediatrician and I said, “What do you think?” And they’re like, “She’s just spirited. She’ll grow out of it.” In my gut, I knew something was brewing and something wasn’t quite right.

I went to another pediatrician and I asked, I said, “You know, could she possibly have ADHD? I feel like there’s something going on.” And the pediatrician is like, “She’s spirited, but she’s fine. It’s just her.”

But as a Mom, You Just Know

The transient tics that before where it was like, maybe she had a threshold to cross the doorway ritual, it would hang out for about six or seven weeks, and then it would like go dormant, And then it would pop up as something else. And then it was a seat belt ritual, the way she put her seat belt on. And if it wasn’t done in exactly a certain order, she would get really frustrated, we would have to start all over again.

I knew there was something. As a mom, you just know there’s something going on.

It Was OCD

We took her to a child psychologist to get her evaluated, and he said, yes, she has OCD. Within a visit or two, he realized that the behaviors my daughter started exhibiting towards her sister had increased exponentially.

Her Sister Was “The Germy Person”

If my daughter coughed, she would do a ritual. If my daughter sneezed, if her sister sneezed, she would do a ritual. If her sister brushed up against her or sat next to her at the dinner table and they touched, she would have to wipe off the germs and do an OCD ritual. The child psychologist is like, “She’s tagged her sister as a ‘germy person’.”

Unbeknownst to us, there was an underlying infection. And so this infection is brewing in her system, but the outer symptoms was her, these OCD flares. Reese wouldn’t use plates out of the dishwasher because she felt they were contaminated because Mackenzie had used a plate. She couldn’t be sure if her sister had used that plate, so she was using paper plates and plastic forks.

And we had to put her plates and forks in a separate drawer so they wouldn’t be contaminated. She had her own drawer in the refrigerator with her food so her food wouldn’t get contaminated. And she had her own, you know, snack shelf. And it was like we had to separate them from everything.

“I Think She Has PANS”

So at that point, I was like, “Okay, it’s time to get serious.” This is not because putting her on an anti-psychiatric med was not an option for me. I’m like, “No, there’s something else going on here.”

We came across Teresa Holler, and she’s a physician assistant who understood functional medicine. She goes, “How can I help you?” And I said, “Well, there’s something going on with my daughter healthwise. I really just need a second opinion.”

I gave her her whole health history, gave her the symptoms of what she was dealing with, and she just put her pen down and looked at me and she goes, “I think she has PANS. Let’s do some testing.” I got a phone call, and they said, “Can you come in today?”

My husband and I went into the office on Monday and sat down, and she said, “I got a phone call after hours from one of the technicians after they ran your daughter’s blood work. They said, ‘In 2017, it was the highest numbers, highest levels they had seen across the board. Her brain was just on fire. The levels were two and three times higher than what they were supposed to be.'”

The Root Cause, at Last

She’s looking at me going, “I don’t know if I can help you. She’s like, “We might have to send you to New York. Let me see if I can figure out where to send you.” And I said, “”Well, what would you do?” And she said, “Honestly, we need to bring down the inflammation in the brain.”

She basically explained to me that through bloodwork that Reese had a Mycoplasma infection, which is basically the bacteria that in walking pneumonia, the same bacteria. It is a bacteria without a cell wall, so it replicates very quickly. One of the questions Teresa asked me is, “Well, how long has it been since your daughter’s had a fever? Because we can see that she has had these infections.”

When was the last time she had a fever? And I was like, “It’s been like three years.” I didn’t realize it, but she had lost her fever response somewhere along the way because she was still getting sick. When she would get sick, her body, instead of having a fever response, it would mount a histamine response.

So she’d have a histamine response to viruses and bacteria, which when you have a histamine response, causes the autoimmune antibodies to increase in your body.

Reese Had Regressed, Too

Her math skills regressed. She had been at a seventh-grade level. We had to get her tested with a math teacher, and she tested out at the second-grade level because the infection had gotten so bad. So her math regressed, her handwriting regressed, her speech regressed.

Treatment Begins

We did three or four rounds of azithromycin, which was the best antibiotic for her Mycoplasma. As we did the azithromycin, and then we started layering in some herbals, like burbur pinella and things that would help her lymphatic system. We did antibiotics for a few months, and then we switched over to herbals, and the herbals were amazing. They just turned the volume down on her OCD. It was gentler on her body. It was gentler on her gut microbiome.

Reese Healed

I was sitting there going, “Is she gonna live at home with us forever? Is she ever gonna be able to drive? Can she be independent? Like, what’s gonna happen?”

To, “Oh my goodness. Like, Yes, we trust you to actually get behind the wheel of a car. Yes, you can get a job. Yes, you have friends. Yes, you can do all these things. Okay.”

We had a math tutor, we had a speech therapist, we had like a team of doctors basically just helping with different pieces and like she’s doing so amazing now and like you would never know.

Reese, in Her Own Words

“Hi, my name is Reese. I am 19 years old and I’m currently a student at the local community college here. I’m about to graduate in May and besides being in school, I am married to my wonderful husband, and and I have a six-month-old cat, which I love. And I also work at a coffee shop.”

Reese, on Being Sick

“There’s a lot of moments that I don’t remember and a lot of moments that I do remember. It’s like, I would remember some, sorry.

You know, it didn’t feel like myself when I would have these really bad OCD moments. It just felt like it wasn’t me in the moment. It felt like it was something else, like almost like I would black out, and then I would just see the aftermath of my sister crying or just like how I expected those around me. And it’s like, ‘What just happened?’

That was really hard. Just recently, my sister was my maid of honor in my wedding. That was just amazing to be able to experience that with her and just go through that and just have her walk alongside me with that because that’s something that I never would have imagined would be possible.”

My Brain Is Just So Sick

Reese would have these moments of clarity, where she would calm down and she would write her sister a really sweet note and it would just say like, “Mackenzie, I’m so sorry.”

She’s like, “I’m so sorry about my OCD. She’s like, my brain is just sick. I love you.”

Her Sister’s Experience, in Mackenzie’s Own Words

“I think that was the hardest thing is I was actually embarrassed by her. I’m sorry. She would do things in public, and I was just embarrassed by her. We both played volleyball in middle school and high school, and so people would know it. She’s my sister, and she would just, like, head tic. She would do tics on the on the volleyball court; you can see. I was just embarrassed to be with her sometimes because of how she was acting and, just annoyed by her. In family photos, it was hard because she wouldn’t stand next to me or wouldn’t touch me or anything.

Not Anymore (in Reese’s Own Words)

“We got matching tattoos, and it’s a picture of us. It’s so sweet because whenever people see it, it’s like, ‘Oh, what’s that about? It’s like, ‘Oh, it’s me and my sister’, but it’s like there’s a lot deeper of a meaning because she was what triggered a lot of my OCD.”

Reese’s Dad Reflects (in His Own Words)

“If I’m being one hundred percent transparent, I am kind of a numbers guy. We have a budget, and so when we started doing these non-traditional, non-covered treatments, we had lots of discussion, and there was some friction there about coverage, and then supplements can be very expensive. The thing about the supplements is you do not see an instant result. It is a very slow burn, and so you have to be committed to it. You really have to trust the provider, and you have to trust that you know not everything is going to work but cumulatively it does work.

I think that was the biggest thing. My wife kept just reinforcing and pushing. Then to a certain degree, I agreed with her over time. Ultimately, you’ve just got to realize that the health and welfare of your kid is more important than anybody.

The moms have got the Spidey sense. They just know with their kids, and the dads, to a degree, have to just trust that.”

Gratitude and Hope

I’m so thankful. So thankful for the awareness that is growing. We have walked out of the fire, and so now I just want to turn around and run back into the fire and go to these families and just go, “There’s a way forward. Let me show you the way out of this. It’s going to get better, and there is hope.”

I think that’s the biggest thing is just knowing that healing is possible.

Learn the Top Five Things Reese’s Mom Did

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