HomeUnderstanding PANDAS and PANS | A Comprehensive Resource GuidePANDAS StoriesA Family’s Long Journey With PANDAS: Fighting for Recognition and Support

A Family’s Long Journey With PANDAS: Fighting for Recognition and Support

In the past five years, Jaynee, her husband Mike, and their two children, Carter and Autumn, have been on a long journey with PANDAS. At first they didn’t even know what PANDAS was and it took years for Carter and Summer to receive a diagnosis. Once they were able to get treatment, they faced the aftermath of IVIG and uncertainties of a full recovery for both children. PANDAS has affected every aspect of their lives, but they have remained resilient and have hope for their future. Read Jaynee’s PANDAS story below, as told in her own words (slightly edited for clarity).

The Beginning: A Slow Progression and Seeing Symptoms

Both of my kids have PANDAS. Carter is 10 and Summer is 8. Typically with PANDAS, you’ll hear about how they wake up one day and you have a completely different child, but that didn’t happen with us. It was more of a slow progression. I think a lot of people miss a PANDAS diagnosis because they are looking for that sudden onset, and because they don’t have it they think it’s not PANDAS—but ours was a slow progression for both kids.

It started with Carter in 2017. In hindsight, now that we know more, symptoms started when he was around four. But it was in 2017, when he was about six, that we started having some concerns. Carter has always been my sweet little boy. When Summer was born, he wanted people to see her and hold her; he’s just so loving. But he started having noticeable changes where that personality changed. He always had separation anxiety, but this was not a separation anxiety we could manage. We tried leaving him with a babysitter for three hours and he would cry the whole time. Every day before school he’d cry. He would fight getting on the bus, but throughout the day he would get better. So we just saw it as a phase that we would have to work through.

He was always great at school. Teachers always loved him; he was the perfect little student that always got good grades. But then in 2018 when he was in third grade, we started seeing him struggle more. His teacher would talk to me about how sloppy his handwriting was, and I agreed with her. But it was hard because I would try to work with him and he would get so frustrated. He just couldn’t understand why his handwriting had changed so much.

He also had issues with math. Every day we dreaded doing one sheet of math homework because of how frustrated he would get. It was different from Carter just saying, “I don’t want to do that.” It was a look in his eyes of, “I don’t know what you’re talking about.” So at that point in 2018, there were some red flags, but again, we thought “Okay, well, we have just been lucky that he’s been doing so great in school and now these are normal challenges.” I always looked for the reason behind the problem. There was always a reason.

At the same time he struggled academically, his personality change really started picking up. He always had an edge to him. Over time, from 2018 to the beginning of 2019, it started to seem like he just wasn’t comfortable in his own body. We kept trying to work through it. We talked about anxiety and how common it is. As parents, we were just looking for ways we should manage it. But at the same time, that glossed-over look in his eyes was something we couldn’t ignore. We were also in the process of moving. There was a ton of change and when I talked to the doctor about it, he said, “You’re going through so many changes, it’s probably disrupting him.”  The guilt started consuming me that we had done this to Carter.

Then, around August 2019, everything really started coming to a head. We were getting ready to go back to school, and Carter knew it. His outbursts were starting to pick up. I realized we were just walking on eggshells with him. Anything could set him off, like dinner. Something that he liked for dinner the night before, he hated the next day; it was things we couldn’t rationalize. He just wasn’t himself anymore. He would get angry, he started isolating himself, and he didn’t really want to play much anymore—but he still went to school.

At this point in time, we started noticing similar changes in Summer. Summer was worried all the time. She would worry about where I was, where my husband was, what we were doing, when we would be home. Between both of the kids I couldn’t even leave the house to get groceries without them calling and messaging me five minutes later to get me home.

Summer had the kind of anxiety where she worried, and she also experienced depression. She was sad a lot. She always needed confirmation that she was doing a good job but it got to an unhealthy point of constantly needing perfection. If she was writing her name with a pencil and had to erase a little bit of the “A,” she would have a complete meltdown because she was upset that she didn’t make her “A” perfect. At the same time, Carter was the opposite. Summer needed a lot of positive reinforcement all the time, whereas Carter was just shutting down and isolating. He was very on edge and wanted us to leave him alone.

Life was becoming really overwhelming. I was working full-time as an HR director. I always had to work; when the kids went to bed, I had to log on and work. It was consuming me, so we decided I was going to quit my job because it was too much. I was struggling, and we couldn’t keep up with what was happening. I had guilt consuming me because I felt like it was my fault, like I wasn’t giving them enough attention.

We were just on autopilot, but in the middle of being on autopilot our kids were crumbling before my eyes. I definitely wasn’t as present to my family as I needed to be. So I left my job, and the kids were really happy about that. We were optimistic. It was going to hurt financially, but we knew it would be worth it to help the kids. Being home, I quickly started seeing things that I didn’t see before.

They would come inside off the bus after school in a complete rage. Their eyes would gloss over. They would run into the house and start slamming things. It was an explosion over nothing at all. They were always angry. Summer started doing really weird things. She would say things like “wa wa” when she wanted to tell me something, but it was like English words couldn’t come out of her mouth. Then an hour after she was home, she would calm down and do her homework. We had no idea what was happening.

Carter was struggling with both handwriting and math and would just isolate himself in his room for the night. He did not want anything to do with us, which was highly unusual. It was really hard trying to figure out what was going on. Summer was experiencing the depression side, the perfection side and the anger side, along with the explosions—but is perfect at school. When I tried talking to her teacher, she would say, “I don’t know the child you’re describing. She is so sweet here and does great work; we have no issues.” It was the same with Carter. He was struggling with writing and math at home, isolated with periods of rage and anger, but he was perfect at school.

The chaos at home continued. Summer and Carter would not have normal sibling fights. They have been close since the day Summer was born, and they never fought. They loved each other so much. We always thought we were so lucky because our kids were best friends, but now they would just attack each other. Carter needed quiet and isolation time, whereas Summer needed over-stimulation. It was like she was the gas and he was the fire, and they would go completely up in flames  every night. My husband is a firefighter who works 24-hour shifts at a time, and at first their fights would happen mainly when he was at work.

Early on, I would sit watching our children going psychotic and call him crying saying, “I don’t know what to do anymore.” He would say, “Well, discipline them.” Discipline didn’t work.  Initially, the days he was home, it wouldn’t be as bad. I felt like a complete crazy person because nobody else saw it. My parents are very close with them and witnessed enough to know something was wrong, but nobody saw what I was experiencing alone in front of me on those nights. Summer would take decorations off the walls to use as a weapon. She would circle the house running, typically with something off the walls, and with dilated pupils saying “wah wah.” I almost didn’t believe what I was experiencing.

I started thinking, what is happening? What are they worried about? What is this anxiety that’s filling their bodies? And then COVID hit. As much as COVID has negatively impacted the world, it actually did us a favor because they had to be home from school to do virtual learning. At school they were overexerting themselves to be perfect because they weren’t comfortable melting down in front of anybody else. So when they came home, these explosions were everything they held inside during the day. But now that they were home trying to do work, they just let it all out. I would try to do their work with them, and their work would be shredded, chairs would be flipped over in the kitchen. Carter would hiss at me–that was one of his big tics. Summer would do the same, but not as extensively.

Then one day everything changed. Carter was so angry that he was lashing out, being violent and all I could do was let him cool off on his own. When I went into his room to check on him, he was lying on the floor, sobbing. He was holding his head with both hands like he was angry at it. He said, “Mom, I don’t want to be angry anymore. You have to help me.” I will never forget that moment or the look on his face.

As his personality changed, he wanted nothing to do with me. He didn’t want me near him—even for a hug, like he used to love. When all this started in 2017, his personality changed from being so loving to just being stone cold. But in that moment, he wanted me to hold him and comfort him. He was asking for my help and saying he didn’t want to be like this anymore. That was our turning point that fueled everything. I promised him in that moment I would find the answers. I knew this was not my child and reassured him of that.

Searching for a Diagnosis

I didn’t go to bed that night. I sat until two or three in the morning going through their medical records. While I was awake, I noticed right away how many times these kids got sick. Every winter: bronchitis, strep throat, respiratory infection, influenza. And then I saw a record of an appointment in July 2018. When reading the notes, I remembered that we took Carter to his primary care doctor because he had a fever and a sore throat. The doctor noticed he also had an enlarged spleen.

At this appointment he also noted that we had an upcoming appointment for Carter to talk about his anxiety. The doctor asked me to tell him more about his anxiety during this check up for possible strep. I just started crying and said, “I don’t know what’s wrong with him. He worries about everything, he’s not himself, his personality has changed, he’s crying at school all the time.” I just really started going through everything.

He then asked, “Have you heard of PANDAS?” I had not and was very taken aback by the direction the appointment had gone.  He gave me a handout and explained the strep connection to these behaviors, which just didn’t make sense in the moment. It was a lot to take in when you’re going in for what we believed to be a common treatable illness, and leaving with a possible autoimmune disorder. It was so overwhelming. The doctor said, “We will check his labs and if his strep antibodies  are elevated, then we’ll do another draw in two weeks. If the antibodies change, then we will consider that a positive lab for PANDAS and you’ll have to see a specialist.”

His strep antibodies, although elevated, didn’t change, so the doctor’s opinion was that it wasn’t PANDAS, and he prescribed him an antidepressant. We trusted the doctor’s diagnosis and recommendation, so we started Carter on the medication. Nothing had been working, and even then my motherly instinct continued to tell me that something was not right.

I felt like I struck gold by finding this in his record because it pushed me to research PANDAS again  with a new perspective. The PANDAS Network site was the first website I found. It gave me hope because it was well established and full of resources. After spending some time reading I knew, without a doubt, that PANDAS was our answer. I had seen articles while doing research about the disease being controversial, but assumed those were out of date. In your mind you think, “Okay, it’s 2019. There are doctors for this that can help us. This is all solvable. Strep is common, so we just need an antibiotic. Carter is going to be so excited to hear I found the answer and he’s going to be okay.”

At this point we had gone through seven doctors already because nobody was actually helping Carter. When he woke up the next morning I told him I found the answer, promised him we were going to help him and reiterated it was not his fault. I also made him a promise that when we got him better we were going to help other kids too, so that no one else had to suffer like we did.

I began looking for help and was taken back by the limited options. In May of 2020, I found a doctor nearby that claimed to be a PANDAS expert. We started seeing her and it really felt like we had someone on our side. I was personally struggling at this point because no one could really understand what I was experiencing—so having a conversation without being blamed for the issues was comforting. It was impossible for people outside our home to understand. You’re already in such a lonely place trying to save your kids, and then you feel the world closing in on you. So to have a doctor that would even entertain a conversation with us was amazing.

At the same time, Summer was kind of in the back of our minds. She was always on the back burner because she was never as severe. She was two years behind Carter, which was hard because we wanted to help her but this disease is so encompassing that you don’t even know where to begin.

This doctor understood what we were going through and just having that connection built trust. We started by having Carter’s tonsils removed. After the procedure he showed improvement for a few days. Some people see drastic improvement, but for us it was just a few days. It was hard because it was like he was starting to come back to us and then he was ripped away from us again. After a few appointments we found ourselves drowning in psychiatric medication.

Carter was on a high dose of ibuprofen, an antidepressant, an antipsychotic and two maximum doses of allergy meds every day. By October 2020, I started to hit a breaking point. We were going to these appointments and every time we left felt like we were leaving with a new prescription but no progress or plan. I was at the point where I was questioning survival; I was exhausted. My body wouldn’t even allow me to cry. The last appointment we had been to, she asked Carter how he was doing. He said “Good.” That was always his response, because his brain was like a robot. He could only give one word answers and that was it. She said, “Well, good. So now, let’s move on. It seems like the PANDAS is gone. Let’s talk about ADHD.” I knew at that moment we were heading into a deeper hole.

During that appointment she convinced him there was no more PANDAS. Now, he had ADHD.  I sat there thinking, “He is not good. We’re doing this all wrong.” He was getting worse fast. The entire month of October 2020 he basically laid in my bed staring at the ceiling. He was turning into a vegetable. I was watching his brain diminish in front of me with no one to help us. He had no quality of life. He was like a robot. When you looked at him you could see the fear he had of his own body. It was horrible. I can picture it in my head but words will never be able to describe what I saw. It haunts me daily.

Carter lost interest in life. He had no desire to do anything. He lost his personality, was losing his memory and lost trust in everyone around him. Carter couldn’t remember the simplest things. He would tell me he wanted pancakes for breakfast and when I gave them to him he had no recollection of saying that. Most meals ended with him flipping the plate over and screaming. He couldn’t write his name or tie his shoes. There were no simple things anymore, even things you can do as a toddler. We couldn’t plan anything. We would try to explain to friends and family that we couldn’t make plans for anything because I couldn’t even plan an hour ahead, let alone a day ahead.

That’s where we lost relationships, because how can you not put effort into seeing someone? It was that bad. I couldn’t even plan ahead for food. I would buy all the food he loved, and then all of a sudden, those were the most disgusting things on earth. His senses were in overdrive, so everything tasted different by the hour. Brushing his teeth hurt. Taking a shower felt like needles on his back. The most basic things in life were pure torture to him. It was traumatizing for all of us.

The Turning Point: Finding Dr. K

Carter and Summer were both worsening at this point. One Friday night in November during one of my regular nights I stayed awake to research, I was talking to another PANDAS mom and she mentioned Dr. Kovacevic. I looked at his website and I instantly knew he was the person to talk to. For the first time there was someone who treated PANDAS, and his website was full of case studies, diagnostic criteria and treatment success rates. He had protocol.

I sent him an email at 1:30 in the morning. The next day, on a Saturday, he responded by 9:00 in the morning. Dr. K emailed me back and said, “This is definitely a PANDAS case. Call my office, set up an appointment.” We got an appointment for Carter in mid-November, just a week after I emailed. We also made an appointment for Summer. She continued to be put on the back burner, which was unfair because she was also suffering. PANDAS is financially draining because insurance companies are not required to provide coverage in many states, including ours, which forces families to make these unfair sacrifices. We decided at this point nothing else mattered other than getting them both the proper medical care they needed. We had a chance to keep Summer from getting to the point Carter was at, so we scheduled the virtual appointment for both.

This was the turning point for us. We had hope again knowing Dr K. was in front of us. In hindsight, back then we had no hope, because our survival mode was so bad. Our life was just gone. We couldn’t enjoy anything anymore. That’s one of the hard parts—we were so sad and so withdrawn that we lost hope in everything. By the time we got to Dr. K, Carter had gone through 10 doctors. I tried not to be that negative person, but I couldn’t even feel excited about anything anymore. Seeing your kids medically suffering in front of your eyes and not having a doctor to call for help or a plan for their future is horrible.

When we met with Dr. K, he got on the virtual call and introduced himself. The thing he said that completely changed everything for me was, “I will be in control now. You get to be a mom again.” I lost it emotionally, because that’s all I wanted. I didn’t realize then, that all I wanted all along was to be a mom again, and I couldn’t. I was the caregiver, doctor, teacher, therapist, wife and mom plus everything else. But I really just wanted to be a mom and wife. I didn’t realize it until he said that. I remember the relief I felt thinking “This is really going to be okay.”

We were on Zoom, and Dr. K asked to see Carter. At this point, he was still in this vegetable state. He rolled over from his bed and looked at him, and all Dr. K said was, “Hi Carter.” Dr. K is very goofy. He is purposely goofy to help the kids relax, but also to see their response to very basic questions. He knows they’re not going to say, “Well, Dr. K, I feel like complete crap. My world is closing in on me. What is happening to me?” So he talks to them and asks funny questions. He talked to Carter for 30 seconds, and Summer for 30 seconds, and was able to describe each of their own symptoms to us just by looking at their eyes.

The doctor was completely accurate. He described Summer, and how she was more withdrawn and depressed, but also high-strung and having self-esteem issues. With Carter, Dr. K said, “He’s a robot. He’s not even living anymore. He is in fight mode ready to attack and  I also see isolation.” Everything we had been living through he was able to articulate to us. I remember my husband and I looking at each other and we didn’t even need to say anything. We just knew we found our person. I will never forget that day.

In the middle of all this, Carter was still lashing out and more frequently. We didn’t understand why asking what he wants for breakfast resulted in such anger and throwing things. We were trying to help him by giving him what he wanted for breakfast. Later on, we learned from Dr K. that something so simple to us completely disrupts a PANDAS brain. Their brains have 20 different lanes moving at once in their head. For other people, we have five different lanes and we can always control them. But, for Carter, when we add a thought to that already spiraling brain, it just completely throws it off track, and goes into like that mode of no return, because we interrupted this thought process that’s already kind of out of control.

He also explained that when some PANDAS kids, like Carter, enter a room or go somewhere they’re scanning the room for possible threats. Their intrusive thought process gets as extreme as thinking someone like Dr. K might kill him or me. That’s how severe these fears go, and why they react so extreme. They do not have logical reactions because they do not have logical thoughts. By this point in time, I couldn’t even go to the grocery store because he would be so overcome with fear that I would die in a car accident on my way to the grocery store, two minutes away. It became too much. I felt like I became a prisoner in the house, because leaving was so bad for them. But then, taking them with me was also so bad for them. I couldn’t win.

Starting Treatment: The First Round of IVIG

Dr. K recommended IVIG because both children already had their tonsils out. We immediately started the IVIG process for them. Once Dr. K took over, I wasn’t the one fighting anymore. I wasn’t the one having to chase down answers. This disease is parent driven. All you have is each other. When dealing with well-known and widely accepted diseases you have boards, research centers, doctors and trained professionals dedicated to researching and treating the disease. When you have a disease like PANDAS, you’re fighting for someone to believe you. Dr. K believed us, and everything he said was factual. Everything I had been saying all along that I believed was happening, he confirmed during that appointment. We had so much hope.

Dr. K gave us the IVIG cost. For Carter, it was going to cost $12,000, and for Summer it would be $8,000. So we were going to have Carter get the infusion first and then Summer two months later. But we stopped and thought: We continue to compare Summer to Carter because she’s not as severe, and that is so unfair. She was suffering too, even if it wasn’t at the same level as Carter. His suffering was so extreme that it wasn’t even a fair comparison.

We started talking about financing both IVIG treatments. I tried working with our insurance company and was immediately denied any coverage. We called and scheduled the appointments anyway because we were going to do anything possible to make this happen. We had money left in our retirement accounts and were at the point that our future did not matter if we didn’t get through this now.

Of course, we were quickly defeated again when we found out just 2 days later that because of COVID and the plasma shortage, the cost of the IVIG medicine doubled. IVIG medicine is made from plasma, and because of COVID there was and continues to be a plasma shortage. The cost to save our children went up to $19,000 for Carter and $16,000 for Summer. I was devastated. We were already so financially drained from all of the care we had provided to this point out of pocket on one income.

We had no idea what to do. I was hysterical because I already told the kids that we have a new doctor that’s going to help them, and they are going to get better. Carter has severe trust issues because of how many broken promises he has heard from doctors, and I had already told him that it is okay to trust Dr. K. I was absolutely terrified we would let them down again when all they knew at this point were let downs.

A family member offered to start a GoFundMe, which was really hard because in order to do that we had to put everything out there. However, we quickly accepted because we were hanging on by a thread—we would have done absolutely anything to get them the help they needed. They were getting worse by the day and I could not handle much more. I remember how weak and broken I felt, and I was scared.

Allowing the GoFundMe to happen was really hard because of the exposure, but it ended up being so good for us. At a time when it felt like the world shut us out and we lost a lot of relationships with people we cared about, so many people came forward that we would’ve never expected. People from our childhood and from places and parts of our life that we would’ve never crossed paths with again saw the GoFundMe and reached out. It was so hard, but at the same time it was very humbling to see how many people cared. At that point we were below rock bottom, feeling like nobody really cared about us anymore. Like we became an inconvenience. We couldn’t make plans or do anything. We couldn’t even be good friends, and that was painful.

The GoFundMe was successful. In just a few days we raised enough to be able to make both IVIG treatments happen. We are still so incredibly humbled and grateful for what hundreds of people did for us. There was a rally of people from all walks of life that played a part in saving our kids.

We went for our pre-IVIG appointment in December of 2020. Dr K was very honest with us and told us that Carter had worsened. He believed there was a 50% chance that the IVIG would work for him with one round, and about a 75% chance for Summer. The doctor gave us the statistics and we recognized his concern for Carter. He said, “We just have to see what happens. Be patient.” We were crushed because we had gone into this believing we were getting our children back. I was incredibly anxious waiting to see my babies again.

Before seeing Dr K, Carter was mentally done with the medical world. He refused to see another doctor. He would tell me, “They’re all liars. They’ve all said they can help me. Nobody’s helping me.” He would refuse to take any pills, whether it was a vitamin or something else. He did not trust anyone, including me. I validated those feelings for him and would tell him, “You have every right to feel this way, but it is okay to trust this man (Dr. K).”

He told me in the past he would rather be sick than deal with another doctor because they all let him down, but there was something about Dr. K that he clung to. He had this trust and connection to Dr. K that we had never seen.  It was a miracle to watch his voluntary interaction with him. We proceeded with the IVIG after being cleared by Dr K and knew that this was our chance at life again.

The Aftermath of IVIG: Summer’s Recovery

After IVIG we expected to come home and have our kids back—the kids that were hiding inside of their bodies that we missed so terribly. It wasn’t like that, and you can never fully prepare for what they have to go through to get better. It’s not at all what we pictured. The first three months after IVIG is complete are expected to include some unpredictable shifts and ups and downs with inflammation. The medicine given for IVIG takes time to work through the body, so it is a process. They would just be sitting watching TV, randomly spike into a different person, and then suddenly snap out of it. It was terrifying and really weird.

One night Summer was talking to me normally and mid-sentence her voice changed, her eyes shifted, and she started talking in a different language. Maybe one minute later she snapped out of it again and picked up where she left off in her normal sentence. Both kids also got really bad headaches. They’d be playing and then out of nowhere start screaming with a migraine. It was so difficult seeing them go through so much pain. But three months after IVIG, Summer was back to herself; it was amazing. Dr. K told us there could very well be a moment where it’s almost like you see the PANDAS leave their body, kind of like the devil escaping, and it happened with her.

We were at Target one night and Summer asked for a particular type of sippy cup. I was confused at first, but then she sat and told me everything about PANDAS, right there in the Target aisle. She told me she was so excited I would let her get a sippy cup, and said she knew her PANDAS was gone because before she always thought that people were laughing at her. Summer said, “I never would’ve gotten this cup or used it, because even though I knew people weren’t laughing at me, my brain told me people were laughing at me for everything that I did.” She asked me if I remember her saying “wa wa” and said it was because her brain was upside down, and when her brain was upside down those are the only words it would let her say.

Summer went on to say, “So I would never use this cup before because even though I know now people weren’t laughing, all I would see in my head were people laughing and making fun of me.” This was why she was depressed and crying a lot. She gave more examples: She didn’t like going places or being at people’s houses because her brain was telling her everyone was laughing at her. She said, “My brain would tell me this was happening but now I know it was PANDAS.”

To Summer, it was like her brain was a different person, and her brain convinced her of things that were not reality. So at school, when she was hiding under tables in Kindergarten, it was because her brain was telling her the entire class was laughing at her, even though they weren’t. She knew that now—she could go back and see that now.

We continued talking through Target and on the way home. My heart was so happy yet so broken hearing her perspective. She also said that she felt really bad for Carter because if she had suffered this badly, she knew that Carter had been suffering longer and had to have suffered so much more.

The Aftermath of IVIG: Carter’s Journey

Carter improved slowly. He had his ups and downs. It was the third month after the first round of IVIG when we saw major changes in him. He was playing again. He wasn’t angry. Carter could handle his emotions. He started crying more, but we considered that a good thing because he was appropriately showing emotion. He was a kid again. It was absolutely amazing. We were so happy.

As all of that was happening, I was un-numbing. I was starting to process what we had gone through and it seemed like all I did was cry. I had months of tears that just couldn’t even come out anymore that were now catching up. As Carter was getting better, he was also talking more. I had pictured him being excited and grateful that I didn’t give up on him, but he actually hated me. He thought I poisoned him. He thought all of the pills I had given him before were poison and that I caused his PANDAS. It was horrible. But I didn’t blame him—when the first doctor we saw prescribed the antidepressant, that was when he first remembered starting to feel bad. His thought process made total sense, but that was really hard, especially because he didn’t act that way toward my husband.

Mike is an amazing father and husband; he was very present this whole time. At first he didn’t see it (the PANDAS), but that’s normal. Dr. K explained how common it is for fathers to not see it until later. The reason why is because these kids’ brains are so incredibly smart, they can temporarily shut it off when they’re in front of other people. But when they’re in front of their mom, it’s their comfort space. It’s their space where they know they can be themselves and let it out, and their mom’s not going to love them any differently. Not that their dads won’t either, but the mom’s connection with the kids is just different. Over time, as the kids progressed, their flares were not controllable anymore and he began to see it.

I think it helped us a lot for Dr. K to say that without even asking because it was hard for my husband to understand, “Why aren’t they comfortable enough around me to let their symptoms out?” Dr. K  said almost every time that’s what he hears from parents. It’s normal. But for me, I was at a point where I got my son back and now he hates me—yet I’m the one that gave up everything. My husband had to keep working, and we’re grateful that he could, but it was very hard from a mom’s standpoint to see how much you’ve done, what you’ve gone through, and now you’ve become the enemy.

I think it’s important to note: our marriage was tested to the core. That’s a whole other aspect of PANDAS that people don’t talk about. You’re both just so consumed by it that your relationship to one another isn’t the same, but you need each other more than ever. I know the divorce rate for PANDAS kids is so high just because of what it does to you. PANDAS comes between marriages in so many ways. And it’s not because of one partner not wanting to cooperate; it’s because you see things differently. Today our marriage is so much stronger because of it. It forced us through so many things that were unresolved that it strengthened us as a husband and wife, and it strengthened us as a family. There was a point in time where I didn’t think that level of strength was possible.

I think it could offer hope for other families to know it is possible. I love my husband now more than I ever have. We learned so much about each other in the middle of it all. Surviving the living grief of our kids was a big victory for our marriage. All the little things we used to fight about and let consume us don’t matter anymore. Once you see your kids fight through something like this, nothing besides your family matters.

Carter’s Relapse

We worked through Carter’s distrust of me. Carter is an extremely smart kid. He’s book smart, but he’s also people smart. He can sniff out BS a mile away. He’s very insightful and in tune with people, but also with himself. It works to my advantage because I can have really logical, adult conversations with him and he listens. It took him and me having some really intense conversations for him to start to trust me again. We overcame that and once I got his trust back I refused to ever let it go again.

In July 2021, Carter started having his facial tics again, which is the first sign that he’s going into a flare up. Carter’s allergies were really bad around that time as well. We knew all along that his allergies needed to be addressed, but we tried to do things incrementally because he had been through so much. The mold counts outside started picking up, and it was like clockwork: when the mold count was high, the tics would happen. I thought, “It’s got to be allergies. It has to be.” I brushed off the signs because early on, when we saw our first PANDAS doctor, she pointed out that Carter has a histamine issue.

Because PANDAS is an immune reaction that causes brain inflammation, you need to determine what exactly is causing an immune response. For Carter, we have seen a clear connection between his flares and allergies. In the summer, I started tracking the pollen and mold counts outside; when they were high were his worst days.

School started coming up and he and Summer were so excited to go back. This was amazing for us because that was a huge milestone. Carter cried a little bit the first few days, but he still wanted to be there. However, by the third day he started getting stomach aches and the tics were increasing. The teacher would do live classroom videos and as I watched I could see that he just looked so uncomfortable. He was trying so hard to be there physically and do normal kid things again, but when I saw him at his desk I knew just by looking at him that something wasn’t right. My stomach sank. His stomach aches picked up—when he has anxiety he does get stomach aches—but it got to the point where he was throwing up every morning before school.

We talked to an allergist because that had been an unresolved issue that I had guilt for delaying. His flare ups clearly have a tie to histamines so it seemed like the answer. However, the allergist insisted he had reflux, not true allergies. We started reflux meds to see if that would help him. Meanwhile, we were trying to tell this allergist that Carter needed allergy testing, but the allergist thought if he had allergies, his eyes would be watering and did not agree. That’s a whole other battle with this disease: You have to educate every doctor you see about PANDAS before you can even get to what your appointment is for. The PANDAS body does not react the way most medical professionals have been trained to see symptoms, so even a simple consult is not so simple.

As we were fighting to hold on, Carter’s teacher also saw what we were seeing. She was very in tune to what was happening to him even though she had only known him for a few days, and she recognized that when math comes up he just completely melts down. She said the look in his eyes is pure fear and terror. Carter told me he couldn’t even be comfortable at school because all day all he thinks about is math coming up at one o’clock, and how he just can’t do it.

We were back in this tornado. He was suffering again and this time it became a fight with the school because the leadership did not want to agree that PANDAS is real. To them, Carter was just a kid who was poorly homeschooled the year before, doesn’t want to be there and was just academically behind because of our parenting choices. Of course, I provided them with PANDAS educational resources. I explained what was happening. I begged for them to please listen, to let me help educate them on the disease, and offered any support possible because Carter really wanted to be in school. We needed their support to hang on to his desire to remain in school. That was such a big deal that he wanted to be there, despite the circumstances.

It was horrible. All of a sudden, I was losing my son again. I knew what was happening. The school was making it worse because they just kept saying, “Have him try. He just needs to try.” I told them, “But you don’t understand what happens. It’s not that he’s not trying or doesn’t want to try. He looks at it and it’s a different language to him. He can’t just try. That’s not how it works. He knows math is coming and his brain goes into a spiral. It’s not like he’s not trying. He is trying so hard.” The problem was that he would do anything to understand and he couldn’t. He was seeing a different language.

His teacher was amazing. She put PANDAS-appropriate accommodations into place to help him get through this but school leadership took those accommodations away. They called me and said these accommodations weren’t happening, and that he needed to be doing math at his grade level, despite the circumstances. He cried all day and spent hours alone in a dark corner. I asked them, “Do you understand that by doing this to him, he’s going to get worse? I need to make sure you understand what you are saying.” They said, “Well, you need to give this time. You need to allow him time at school to try.”

Everything is a fight with PANDAS. Fighting is all you become accustomed to…you have to fight for everything that is normal to everyone else.

I will never forget the look on his face from being at school without the accommodations he needed. What I saw in him haunts me to this day. The day they took away the accommodations was on a Thursday, and by that Saturday we rushed him to the emergency room because his breathing was starting to get blocked. He ended up having a strong bronchial infection and then a sinus infection on top of it.

Carter’s infection put him into a full relapse and he did not get better. School refused to consider homebound instruction or provide flexibility to continue learning at home but would check in to see if his school work was getting done. No one ever extended support to us. He laid on his floor staring at the ceiling every day. He knew what was happening to him and again had something so normal ripped away from him. All school needed to do was allow him to continue learning at home, or find a way to help him not feel so alone, and they refused to help us because they did not believe this was real.

District leadership told me they would not do homebound instruction for him because they typically only do that for kids that have something serious, like cancer. That was really hurtful to hear because I’ve actually heard PANDAS kids say they wish they had cancer because then people would understand them. Everything is a fight with PANDAS. Fighting is all you become accustomed to. You have to fight for medical care, you have to fight for insurance coverage, you have to fight for someone to listen to you. You have to fight for your child to get an education. And you have to fight for everything that is so normal to everyone else.

I had to start pulling back because I couldn’t fight anymore, and I knew I had to save my energy for what was ahead of us. We pulled him from school because I couldn’t fight—I wasn’t going to win and even if I did, we did not trust leadership based on what we experienced. At that point he was too traumatized. There was so much damage done from those few days of school that we couldn’t do that to him again. We enrolled him into an online school, which has been amazing. Summer stayed in school, which was very hard for me. I would see kids running into school, including his classmates. I felt like I was wronging Carter by leaving him behind.

When I would pick Summer up after school, I would see Carter’s friends running past me after their normal day of school with big smiles and it killed me. I would cry every time I went into the school to help in Summer’s class. It was so hard because I would see these kids who are happy and healthy and that was supposed to be Carter. It just wasn’t fair. He had another year stolen from him.

Carter’s Second Round of IVIG

In November 2021, we ended up doing IVIG again for Carter, which was really hard. He was upset because he trusted us when we told him the first round would make him feel better, and now he had to go back. To him, that was breaking his trust again, and I don’t blame him for feeling that way.

With PANDAS, by the time you figure out your options, your child is already traumatized from what they’ve been through. That’s why it is so important to start getting kids help at the onset of symptoms, when they still have hope and trust. Any parent I talk to that’s at the IVIG stage has been in it for a few years, their child is traumatized and they’ve given up on the world. By then, trying to start these treatments that we know will help them feels nearly impossible.

It was really hard to tell him that he had to get another round of IVIG, let alone physically get him there since it is out of state for us. At this point, he was over it. He literally said, “I don’t want to feel better. I’m fine living like this. Just leave me alone.” He meant it. Up until the second IVIG treatment, he was back to just laying on his floor, staring at the ceiling.

The night before we had to leave for treatment he was very angry with me. The day of, I went into his room to monitor him and noticed it felt colder. I went to his window because it was a little bit windy and I wanted to make sure the window was shut. I started pulling up the shade when he ran around me, jumped out his bedroom window and took off running.

Carter had popped the screen off his window that morning, hid it under his bed and was planning to escape. His room is at least 10 feet off the ground. My husband and I were running around looking for him and initially could not find him. I ended up finding him behind our shed with a shovel. He firmly said, “I am not going. You’re not going to make me go. It is not happening. You’re a liar.” He refused to let us get close and would threaten us if we got near him. I had to use a lot of calming techniques and do some hefty negotiating with him to get him to come out.

That was his last big episode. He completed the second round of IVIG. Dr. K told us the second round is slower for some reason—it takes six months to see recovery and is very slow but steady. With the first round, you wait and think, “Okay, three months, we’ve got this, we’ll have some good moments.” This time it’s been harder because it’s six months of waiting while trying to figure out life again but also  prevent illness at all costs. Summer got a sinus infection a few weeks ago, and she flared from it, which was horrible. Then on top of that, Carter went into a six-week flare which was a reaction to Summer.

It’s the simplest things that make life so complicated. Like yesterday, Carter lost a tooth. Losing a tooth causes a flare because when the tooth comes out, it releases bacteria into the bloodstream. A little winter cold should not be a big deal. Well, it’s everything to us because once they had an illness, or once a tooth comes out—we get a flare for four to six weeks. A flare is anger, being tortured in your own body by your own body and not able to do anything—not able to do school, not sleeping. It’s hell—it’s an absolute living hell. Carter has now lost three teeth since his second IVIG, which is terrible timing. He deserves a break and it kills me that I can’t give him one.

That’s where we’re at now. We just pulled Summer to do online school as well. She asked and the reality is we can’t risk her getting sick. We have felt what it’s like to get our son ripped away from us for the second time and it is not worth it to take the chance. So she’s home now. We’re going to keep doing online school, and so far it has been really good for both of them to be home together. As a family we have a lot to heal from, but having them home reduces stress in all of us for the most part, so it is worth it. They are reuniting their own friendship and it is a very rewarding thing to experience together.

Looking Toward the Future

When Carter relapsed, it was extremely difficult to wait for time to pass without being able to have any control. I decided that I needed to learn more about their bodies and how the immune system works. We really needed to do everything we could to boost their immune systems. We live in fear of illness but know that it’s going to happen at some point. So our motto right now is controlling what we can control.

We’re working with an integrative doctor, focusing heavily on how to boost their immunity and how to keep their bodies functioning at full speed from an immunity standpoint. That way when something happens, we have a better chance of not going backwards. It helps me to feel like I am working towards something rather than waiting on time because these days are very long. I feel better positioned now with all of the medical knowledge I have been able to learn.

Through all of this, we have learned so many positive things. We look at our kids, and they are the strongest, most resilient kids I will ever know. They never complain. Yes, they’ll cry. They’ve cried and have been upset and will say they hate PANDAS, but they’ve never played the victim. They never sit and say, “Why me?” They handle what comes their way better than many adults I’ve seen. They’re so resilient.

We appreciate life’s moments so much more. Carter tied his shoes again two weeks ago, and I cried because he could do that again. He also wrote his name again recently. It’s all of those things you don’t realize you take for granted until it happens to you. At the same time, I always say, “We’re the lucky ones,” because we appreciate our moments together so much. We celebrate the little things. Our life has completely changed for the better. I tell the kids, “If I could change it so it never happened, I would do that in a heartbeat, but I can’t. So we’re going to embrace what we learned from it and live the best life we possibly can.”

That’s the only way we can live. Even when the symptoms first started, I told them, “We’re going to get better, and we’re also going to help other families so other kids don’t have to fight through this as long as we did.” It’s really incredible to see how they handle the whole thing. Summer has told me, “Mom, I think this boy at school has PANDAS, what could you do for them?” They think differently about people and about the world and how to help others which makes me so proud.

There’s a part of the journey that shapes you into a better person and it’s exciting to see—to think about the adults they’re going to be because of all this. It’s horrible, the hell you go through. Hell is not even close to what it is, it is way beyond that—but we’re also so lucky. We try to stay positive. It’s a world you don’t want to ever have to face, but if you have to live it, only other PANDAS families understand. A lot of the closest people in our life now are PANDAS families we have met along the way.

Why Jaynee is Sharing Her Story

PANDAS never goes away. Even when I was starting to feel again during their remission, I was experiencing survivor’s guilt. I felt guilty because my kids were better but all of my friends that I made throughout this journey still had kids who were not. PANDAS never leaves. We were naive to think after the first IVIG that we were in the clear and could move on. That’s not how it works. It’s our life now, and I’ve tried to shut it out, I’ve tried to forget it, but you can’t. The PTSD from the trauma of what I have seen my kids suffer through is unbearable.

Because I promised my kids early on that we were going to help other families once they were better, I’m sticking to my word. It’s important. PANDAS is a parent-driven disease and will remain that way until the AAP steps up. When your child is diagnosed you don’t have time to figure everything out on your own. You need a community to step up and help you. The PANDAS community is like that. It’s almost an unspoken thing. It just becomes your time to step up. Helping others and sharing our story is the healthiest way for me to handle the survivor’s guilt that I feel.