A Talk with Nathan Who is Recovering from PANS/PANDAS, Lyme & CIRS
Gabriella: I had a chat with Dr. Nancy O’Hara, Nathan, and his mom a few years ago and was blown away by this dynamic group who worked as a team to focus on recovery with compassion, tenacity, and a lot of smarts. At that point, Nathan had triumphed over many years of significant flares and was in a lengthy remission. Since then, he had setbacks, but with true grit, this team has once again pulled together, and Nathan is doing well again and learning how to manage a few lingering symptoms. I could not be more thrilled to share with you all Nathan’s story, Dr. O’Hara’s treatment overview, and followed by some of the questions and answers. Be prepared to be amazed and inspired! I know I always am by this trio.
Next , Dr. O’Hara will host a third Q&A Session with Nathan and Julie. His mom, Julie, is a CBT therapist and explains so well how and why applying some Parent Management Techniques (PMT) and incorporating CBT into your daily routine can make a significant difference. We update the NECFH’s zoom schedule every week; the registration link and schedule are on our blog. Make sure you make all the talks. We do the best we can to write them up, but they are still better in person. Then you can refer back to these notes anytime you want.
Nathan: I am 16 years old and a sophomore in high school. I am recovering from PANDAS, Lyme, and Mold. The three are very interconnected. I was first diagnosed with PANDAS 13 years ago and since then, my story has been pretty up and down.
When I was three, I had just finished antibiotics for strep, and I woke up one morning and started hopping up and down instead of walking. Also, I became anxious about thunder and other things. My mom, who is a psychologist, luckily learned about PANDAS a little in grad school. We saw many doctors and then found Dr. O’Hara. With her, I started on antibiotics and vitamins. My symptoms improved; I still had flares a little, but they were manageable.
But then in 4th grade, so about six years later, things turned for the worse. I started having vocal tics, increased OCD, and rages. I could no longer write my name. I had to withdraw from honors math as I could no longer do simple equations. In school, I had to adjust my desk, so it was “just so.” I had to rearrange my socks all day and made noises constantly. To ease my compulsions, my teacher let me sit on the floor. Then when I got home, all my symptoms were worse; I fell apart, throwing things across the room while screaming. Nothing felt right in my brain. Nothing helped. My OCD made it difficult to watch TV because I would stop and rewind every few seconds to make sure I could repeat the lines perfectly. I had the same problem while reading; I had to re-read passages until it felt right in my head, but really nothing ever felt right. My family was a mess, and my brother, who is three years younger than me, used to leave post-it notes for mom about how awful PANDAS is. I didn’t realize how much everyone was walking on eggshells around me at that time. Despite being on several rounds of antibiotics, I had strep. I never had a sore throat or fever; it came in the form of perianal strep.
After consulting again with Dr. O’Hara, I went on a month-long steroid burst and felt the best I had in a really long time. During that time, my teacher, with tears in her eyes, told my mom about a crazy complicated math equation I had just done after not being able to do any math for months. Unfortunately, off the steroids, my PANDAS symptoms returned full force. Dr. O’Hara felt that because I had responded well to steroids that I might respond well to IVIG.
So that summer, I started IVIG and got a tonsillectomy and adenoidectomy. They found a lot of bacteria inside the tonsils even though I didn’t have a history of strep throat, but had a history of perianal strep. Since then, I continue to have IVIG every six weeks at home. From 5th grade to the Spring of 8th grade, I responded great to the IVIG. My OCD was minimal, I was social, my mood was stable, and I could focus enough to go back into my advanced classes. I finally had my brain back during those years.
Then at the end of 8th grade, that summer, and as I went into 9th grade, I began to flare again, began to feel worse every day. I was emotionally dysregulated, had head pain, crippling OCD, and what turns out to be dysautonomia. Dysautonomia is the dysregulation of the autonomic nervous system; this I had never had before. My body could not regulate its temperature. I can go from being completely cold to unbelievably hot; I still struggle with this to this day occasionally. I was often feeling nauseous and dizzy in my head. It was impossible to concentrate in class. I went from being social, pain-free, and happy with minimal OCD for years to this sudden hell. We had no idea what was triggering this sudden onset of PANS symptoms and new dysautonomia symptoms as I was still on prophylactic antibiotics, IVIG, antivirals, and anti-inflammatories. I had lived in fear of my symptoms returning full force, and this was my nightmare coming true.
One day while my mom was pacing back and forth, trying to figure out what was going on, she looked up and saw black dots by the vent. She sent Dr. O’Hara a picture of it. MOLD. So then I had PANDAS, Lyme, and Mold.
We had to remediate our home, had to clean our AC system, throw a lot of stuff out, which took a few months. Dr. O’Hara helped me address the toxicity in my body caused by the mold. Bloodwork and urine tests identified the strain of mold I had. I started taking Cholestyramine. Meanwhile, we continued to search for additional reasons that I was so sick. Bloodwork revealed that I also had Babesia. Mid-freshman year, I was barely making it through my day. I missed classes. I could barely talk to friends. I had head pains. My mind never stopped; my OCD was flaring with perseverative thoughts. One day my guidance counselor thought I was high because my pupils were so dilated. It took me hours and hours to get through my homework each night. I took showers for almost two hours a day. Looking back on it now that I am better, I see that it was all insane! I was freezing in the shower and had to wash myself in a particular pattern. There really wasn’t enough time in the day between my work, my showers, my crying spells, and my chills and I was getting to bed about 1:00 am. I had to give up tennis, which I had been playing four days a week as I got dizzy on the court. I didn’t think I would ever get back to competitive tennis even though it had been such a big part of my life.
By January, things kept getting worse. I could not make sense of any of my illnesses. I could not explain it to any of my friends. People began to think I was unfriendly and strange. That stress exasperated my symptoms. It was worse than 4th grade because of the crazy workload, hormones, and teenage social pressures. I was not only being controlled by PANDAS but now mold and Lyme too.
Last February, when we were traveling in Mexico, I got sick. My mom describes me as “gone,” I refused to eat or drink due to throat pain, and I was impossible to reason with. When we returned home, Dr. O’Hara, once again prescribed a steroid taper, and I started to come back. I felt the best I had in months. With steroids, once again, it stopped the inflammation in my brain. My treatment protocol has changed a bit over the years. But a summary of what I take currently is: prophylactic antibiotics, antifungal, probiotics, helminths, supplements to help with detox, CBD, Artemisinin for the Lyme, Cholestyramine for the mold, and Propranolol and B12 for the dysautonomia.
And now, I can respond better to IVIG. I am also working with a chiropractor who has been making cranial digestive connections with my nervous system. I think this has been essential to helping some of the pain I have been having in my head. He has been using structural and respiratory techniques.
Sophomore year has been a complete turn around since last year. I feel so much better. An ongoing treatment I have used is cognitive-behavioral strategies. CBT is my mom’s specialty in her professional life, and she has helped me a ton with this. It usually is tough love, but I know it is for the greater good, for my best interest in helping. It teaches me how powerful distraction is, whether the distraction is playing piano, breathing, watching shows (which I can easily do now). Everything has become much better now as a result of many of the treatments we have been doing.
Even though I still struggle with some symptoms, although much less this year, I am doing much better. My most significant symptom is head pain, but my OCD is minimal; I can now take a 15-minute shower. I no longer compulsively check for things, and I have As in all my classes, even in honors and AP classes. I got back on the varsity tennis team this Spring before we had to stay home for COVID-19. I am also a committed pianist. I play jazz and classical piano. In fourth grade, I had to stop playing, but in the last two years, I have aced a major competition in New York. I have also been composing and been selected for a competition in Austria and other competitions. Last year when my symptoms were bad, I was able to push through and keep playing. It is a mental and emotional release for me to play.
The silver lining is that I have become much more confident in myself. I feel like I am a really well-grounded kid. I know that I have gone through hell, so I feel like I can go through a lot of things now. This confidence has helped me stand up for other people that are being made fun of. This confidence is the reason I am here today and have done other talks with Dr. O’Hara. I don’t care if people make fun of me because I know what I have accomplished and what I have gone through to get here; no one can take that away from me. I want to help others who are struggling by telling my story and let them know they can get better. Also, I want to tell other doctors, some who are closed-minded, that they can learn to help their patients more too.
Mold, PANDAS, Lyme, it is hard to know which is causing symptoms at any given time, but they are all relentless. We need to help doctors understand these complexities so they can think outside the box with open, educated minds as they treat us. Thank you!
Dr. O’Hara’s Case Study Notes
Dr. O’Hara: Nathan is a complicated case. He is a remarkable young man. I do think that Nathan has made tremendous gains not only from the medical treatments but importantly from all the CBT he has done at home.
- He was a healthy infant and toddler.
- First Flare: He was first diagnosed at age 3, started hopping, had increased anxiety after finishing antibiotics for a strep infection.
- Better with antibiotics, antioxidants, anti-inflammatory diet, etc. (EFAs, probiotics, vitamins, NAC, Grapefruit Seed Extract)
- Fourth grade he was suddenly worse.
- Tics, OCD, Rages, Couldn’t write name, Math regression, Progressively repetitive and regressive behaviors
- Rectal strep even while on antibiotics
- One month of steroids lead to definite improvement in symptoms, regained math skills
- Off steroids, symptoms returned
- Tonsil-adenoidectomy – (do a culture of the tonsils both on the surface and inside as there can be a multitude of different germs.)
- Started IVIG, continued every 6 weeks
- Responded well until 8th grade
- Crippling OCD, Head Pain, Emotionally Dysregulated
- Dysautonomia: Not able to regulate temperature, felt dizzy, light-headed (could no longer play tennis)
- At the time was on
- Antivirals (prescriptive and naturals-Valtrex, amantadine, Vitamin A, lysine, OLE)
- Prophylactic Antibiotics to treat strep and other infections (various)
- Anti-inflammatories (CBD, Quercetin, Curcumin, etc.)
- Found mold in bedroom & ceiling vents
- Remediated home
- Added Cholestyramine used for specific mold species
- Added other treatments to help with detox and bind (GSH, NAC, binders)
- Positive for Babesia
- Symptoms: head pressure, constant headaches,
- Dysautonomia and Paresthesias (numbness, pins & needles)
- Night Sweats
- Rib and Bone Pain
- Air Hunger
- Another viral infection made symptoms worse
- “I was gone.”
- Round of steroids lead to huge improvements
- Resolved Babesia
- Symptoms continue to improve with
- Prescriptive and functional medicine treatments
- Antibiotics, natural antimicrobials, probiotics, CBD, Cholestyramine, Arteminisin, helminths, detox support, antioxidants, minerals, vitamins, mitochondrial support
- Kinesiology/chiropractic interventions
- Continued CBT
- Still has some symptoms from the mold disease which we continue to treat
- Prescriptive and functional medicine treatments
Questions & Answers
- Lots of fluids (a minimum of an ounce per kilo a day)
- Moderate exercise, particularly isotonic exercise
- Nathan, even though doing better, still needs a space heater to keep him warm enough
Treating Perianal Strep
Dr. O’Hara: Treat the same as for strep throat. Also, focus on treating gut dysbiosis.
Removing Tonsils & Adenoids
Nathan and Julie: We did that after 4th grade. It made a huge difference. Yes, we would absolutely do it again knowing what we know now.
Dr. O’Hara: Historically and through research, removing them helps about 50% of the time. Nathan, on paper, should not have benefitted from it because he never had strep throat. He had perianal strep. Specific criteria include: not only recurrent strep infections but also sleep problems and sleep apnea, tonsillar hypertrophy (persistently enlarged tonsils). This is one reason it is so important to do a full culture of the tonsils. His tonsils were full of bacteria in particular strep. There was no Babesia or Bartonella in his tonsils.
Question: Does CBD help you?
Nathan: I have been taking it and it helps.
Julie: Yes, it helps with anxiety. He is on a high dose. It did not help when Nathan was acute. But now, as he is healing, we reintroduced it, and it did help. It’s like his body and brain were able to use it correctly.
PANS Treatment Length
Dr. O’Hara: There is no average treatment length for PANS. It’s at a very, very minimum of three months, but it could be three years. It really depends on how many co-infections a child has and how severe their disease is. Nathan, Julie, and I have been working together for years. He has been on some of the treatments for many years. It’s not a quick fix. It is very episodic, up and down sort of thing.
Question: How much do you think maturity has helped you make progress? Do you think maturity is why some of the behavioral changes stick more now?
Nathan: I am more motivated as I mature.
Julie: Yes, he is really motivated. We also talk a lot. Having routines as much as we can helps. And having proactive talks so we can talk about what works and what doesn’t so we can try and catch some of the bumps. We often have to circle back to some of these conversations. We have to catch our moments when he is willing to learn.
Flaring Without Outside Exposures During COVID
Question: My son is flaring right now but we are practicing self-isolation and I am curious as to what could be triggering him.
Dr. O’Hara: All of us are exposed to germs. And even now there are still things coming into our home every day so we can’t rule out an infection without looking more into that. But inside of our homes there are still triggers too. We do have to think about Mold and Lyme disease. Lyme can be very long in coming in terms of seeing symptoms. We can’t forget about allergies. Plus, there can be hormonal shifts.
Question: How do you get kids who are refusing meds to comply?
Dr. O’Hara: It is not ideal, but one can hide them. Put them in a smoothie or a sweet drink from a shop. You can also put it in applesauce with tremendous amounts of cinnamon; the cinnamon cuts the taste. With teenagers, there has to be some type of commitment and joint discussion.
Julie: Nathan was completely compliant with taking his medication. He is invested in getting better and has an innate trust in Dr. O’Hara and me that we are giving him medicines to help him. But if he hadn’t been so compliant, I would have tried to be sneaky and I know we don’t want to be sneaky with our kids. But this is important. Sneaking is not ideal but sometimes we do what we can do. One can also come up with a reinforcement program. You take these consistently and have some sort of positive reward. It is essential to get the meds in so we may have to employ some of these strategies.
When to Implement Therapy
Question: Do we wait until the brain heals or do we address the symptoms along the way with therapy?
Dr. O’Hara: Never forget therapy. I say that to every family that walks in the door. Therapy has to be part of the process from the start. Even if your child will not go to therapy, parents must learn techniques. Most of the therapists will teach the parents techniques they can do at home. Even if your child gets better medically, you are going to have all these secondary issues to deal with.
Julie: I agree with that. Talk to a therapist who understands that even if your child isn’t engaged, which is likely, you need some strategies; you need some guidance, you need some support quite honestly. You will be able to do some of it with your child.
Regular OCD versus PANS/PANDAS OCD and Therapy
Julie: Be forgiving to yourself because when your child is really flaring and really sick, it doesn’t matter how skilled you are, or what you know in terms of cognitive-behavioral therapy or any therapy, they are not going to be receptive. Their brain is on fire. It is not typical OCD at that point. I treat people with OCD every day. PANS/PANDAS OCD is totally, totally different. They are not capable of using those tools in the same way as those with regular OCD can. It’s therapy, but it’s not going to be the same therapy or the same CBT that you would be doing with someone who didn’t have one of these inflammatory illnesses taking over their brain.
Finding the Right CBT Practitioner
Question: How do you suggest working with someone who doesn’t understand PANS?
Julie: I don’t know if it will be of value to you if you are working with a cognitive-behavioral therapist who doesn’t at least recognize PANS because PANS is different. If you’re working with someone who doesn’t know about PANS but is open to learning and understanding, then that’s okay. Maybe that will work. I think if you work with somebody who really isn’t open to PANS, it could make things worse, rather than better.
Incorporating CBT into Daily Life – Stop Feeding the Beast
Dr. O’Hara: The beast is this disease. Nathan’s mom, as a CBT therapist, has taught me, and has followed through with Nathan to not continually give the OCD what it wants. A lot of what Nathan has been able to accomplish is obviously due to him, but also due to his mom’s continued efforts to not feed the OCD beast. We will talk more about this in the next talk.
Julie: Not feeding or encouraging their OCD. Sometimes as parents, we inadvertently make the symptoms worse by allowing the symptoms to take over. We allow our kids to give into their symptoms and to have behaviors that aren’t healthy for them to take over.
Nathan went to school. He didn’t miss a day of school. There were days he left and I basically said goodbye and locked the door. He would be in tears or angry at me. I still felt the best thing for him was to be at school. Things were tough but he stayed. From a behavioral perspective, I knew the minute I said he could miss school or come home early because his head pain was too much or he was too tired, or his OCD was too much, I knew it would be an extremely difficult struggle to get him back into school. I didn’t feed it; I didn’t make it worse. If he had been at home, he would not have been getting his work done, and we would have had a battle about him going every day. So we worked on not reinforcing his desire to stay home even though we wanted to and we were so tired. We set the limits that need to be set rather than not setting those limits and therefore feeding the beast, feeding the illnesses and letting them take over more and more.
Dr. O’Hara: So basically he had an in-home CBT therapist.
Julie: Right. And that is by no means easy for either of us. Right now he is feeling better, not perfect but better. There were definitely things that I let him get away with while he was sick. I chose very carefully the things I let him get away with. Life was so hard every single day. So right now we are trying to transition from letting him get away with some things to now, doing more and more things. For example, I didn’t always make him put away the dishes when he was sick but now he has to do all those basic things.
Nathan: Yeah, I kind of have to pick up the slack now. I never knew what normal responsibilities were when I was sick. Just making it through the day was the main goal. Now, I realize when all the health issues are not going on, I have other responsibilities in life.
Julie: And not just responsibilities in terms of chores but he has new behavioral responsibilities. Like, now I am 16 years old, I can’t have that big reaction with my brother. It is finding ways to react more appropriately. As his health changes, his behavior needs to change. That is part of the CBT that we are doing now.
Also, he used to obsessively check for ticks. And when I say obsessively it was non-stop – when was outside, when he was outside. It took hours and hours of the day. That was one of his many compulsions. So to ease his checking he always wore socks but, as typical with OCD, that did not ease his check. In fact, he became compulsive about wearing socks. He was afraid to never not wear socks. So my push back, from a cognitive-behavioral approach, on that would be to make him try not wearing his socks. So I would ask him where would be the safest place in his mind be for him to not wear socks, even if it was only three steps. So we would choose a spot where he would walk without socks for a few minutes and then we built from there. Basically we arranged for mini exposures throughout the day. He was not in a flare during those time but we proved that he could have successes and mastery with it. That is just one of many examples.
And today, he was doing something today that he thought, in his mind, would ease a checking. But actually, if he had done that, it would actually be something that would not actually ease his checking.
Managing Tough Love When Not Feeding the OCD Beast & Implementing Parent Management Techniques
Question: How do you not feel terrible when not giving in to all the obsessions and compulsions? How do you implement Parent Management Techniques?
Julie: It is not easy. You do feel terrible. I can’t take that away from you. But it is important to do it anyway. Do your best to try not to show your stress about it to your child. Do something that you are going to be able to tolerate. At least you’re moving in a positive direction in terms of pulling back from participating in your child’s compulsions, whatever they may be, such as reassurance seeking. Be kind to yourself; remember this is a challenge for you too. You are likely going to trigger a big reaction in your child no matter how little you make a change and push back against the OCD. Remove yourself from the room, as long as your child is safe. Say I love you, but I’m not going to do this with you right now, it is not as helpful as you think it is.
When you are reducing the number of times you respond to their compulsions, I would do that in baby steps. I would not jump from say reassuring 30 times to 3 right away. I would go down to something more manageable and work your way down to 3. It is baby steps and being kind to yourself.
You can explain the process to them in a calm moment when they’re not really in an angry moment. Let’s use the compulsive desire for reassurance as an example, but you could swap that out for any compulsion your child is making you participate in. Tell them that I know your brain is telling you that you need reassurance from me but that’s part of this illness. I’m not going to answer you as many times, and that’s going to be really, really hard for you, and it may make you angry, but I’m doing it to help you. I’m trying to help you conquer this illness and not feed it.
Then when they start asking for reassurance and get angry, they’re not really going to care about any of your reasoning. They’re just going to want the reassurance because it makes them feel better. But as much as you can, find that inner resolve not to reinforce it. Remind yourself that you are taking the power from the OCD by not validating and reinforcing their questions. So build yourself up with the idea that you’re working, though it is hard, that you’re working towards something that’s going to be more positive by not giving into it
Question: How do you implement Parent Management Techniques when the compulsion is not something that you are being asked to react to? For example, not getting out of bed or not getting out of the bathroom.
Julie: I think it’s difficult. Sometimes you have to know that no matter what you do, you’re just not going to budge your child. So try as much as you can to disengage from it. For example, if they are not getting out of bed and seeking reassurance at the same time, then do not participate in the reassurance. Don’t feed the beast while they’re not doing what you need them to do. As an example, when Nathan was taking the long showers, if I saw a window of opportunity where he was a little receptive to working with him on it, I would. I would sit on the floor with a timer, knowing it would be hard for him and me to do this work. So, I set the timer, when it rang, he would have to move onto the next leg. During this process, I would tell him that it is going to feel uncomfortable to move on, but you need to do it. I did this when I felt like he was in a place to make even the smallest movement on this. There are times when you can’t.
How to Return to School
Question: Do you have recommendations on how to get your child to return to school after a period of school refusal or even after being away due to COVID-19?
Julie: I think that in a calm moment, we set the expectation of what we are going to do and determine baby steps to achieve it. Work with one “go-to” person at school to help you figure out how the best way to do this. Your child needs to participate in this process along with you and someone from school. Basically, you want to do a functional analysis of your child’s day. Determine what the easiest part of the day is. This will be different for every child. For some, it might be lunch and recess so they can ease in socially without academic expectations. For some, it might be science class because they love the teacher and the subject. Another child might want to start with gym because their best friend is there and you don’t have to be sitting in a seat. You want to choose a time based on the analysis of what will be the most successful for your child. Do not pick a period based on your schedule or the school’s schedule; this decision must be made with the child’s best interest in mind. This is not about what they learn in that class; it is about showing them that they can be successful at staying at school. You have to take this step first before you can expect them to re-enter school fully.
The goal is to get them to stay through that chosen period. And no matter how uncomfortable it is for them to stay, the message is that you can go into this world, period. I know you can do it. I know you may be in pain, I know your OCD may be uncomfortable for you, but you can go in for this one period.
Managing Behaviors Through COVID-19
Question: How do you suggest we manage our child not wanting to work during COVID-19. Right now, I am only having my child do the must-dos. What about the can dos that she is not doing?
Dr. O’Hara: During COVID, you’ve got to give yourself a break. You have to really take care of yourself, your own anxiety, or your own feelings of fear. Tell yourself I can do this today even though I don’t feel like I can do it for the next eight weeks.
Julie: If you feel like your child’s having a better day or a better hour, and you feel you can fit in something that is a can or must do, then do it. Again, it’s being forgiving right now. Every single family has found a different rhythm. I talk to patients every day and each family is different; there’s no right or wrong. Don’t beat yourself for not doing all the can dos. It’s finding what works for your family during a very difficult time. And forgive yourself for that.
Keeping up with Schoolwork
Julie: Keeping up with schoolwork was not easy. Nathan doesn’t remember a lot of it. Everything took a lot longer, but he did not fall behind. He is an extremely hard worker with a lot of grit and perseverance; he went through a lot. The days were long. He does have accommodations, including extended time, as written into a 504plan. He needed all his accommodations; he would not have kept up without them. The school was very receptive and respectful of Nathan. They saw how he performed when he was not flaring that he was a completely competent, productive kid. They could see when he was flaring that his brain was just not working right. They were supportive. He made it through with a lot of tough love. He could let out the stress with a lot of crying and deep breathing to let it out, but then he sat back down at the table to keep working. It wasn’t easy for him or us to make him stick to it.
Anything Parents Can Do to Help More
Question: Do you think there was anything in retrospect that could have helped you more during your rages, or times of brain pain? Do you think there is something parents can do more to their help their kids go through this without going off the rails?
Dr. O’Hara: I think not feeding the beast is a big part of what parents can do more of. As parents, we often want to help our kids get through it. But if we don’t let them suffer to some to degree, if we don’t let them acknowledge that they are feeling this, then they don’t know what they are feeling. So as parents, we have to tell them that their behavior stunk right then, you really were off the wall or in that moment you were really raging, you may not have realized it but you were. So when you start to feel that way, then try and do this – breathe, calm, distract or whatever it is that you are trying to work on to restore calm.
Nathan: I think all of that is true. I think that distracting, doing a different activity or changing the scenery definitely does help. But if over time, those things didn’t help, the rage eventually just sizzled out. But there is no easy way.
Julie: No, there is no easy way and sometimes you just have to ride it out. To build on that, as hard as it is, there is the need to still set the limit. It is such a balancing act between letting them rage and also showing them they have some control to pivot from it, to change it. So they can still set expectations for themselves.
There were times when Nathan was having a really bad reaction to something. For example, he was about to get into a car and drive. But he kept saying he can’t, he has head pain and more. So I said, we are going to sit here in the car, and you can feel whatever it is you are feeling and you will get to the other side of it, then you will drive home. He was definitely in a fit but we continued to sit there in the parking lot and got passed it and he drove home and his mood improved. I said, Nathan, it is important for you to know you can feel what you need to feel but that you can also get past it and you can still do the things in your life that you want or need to do.
Nathan: And every time I do that, I have a mental memory that I got past it. Now that I am feeling better, it is getting easier and easier to do things and get through things. If I can knock it down once, it won’t get to such a hard place the next time.
This illness does not have to overtake me. I can sit with these emotions.
Dealing with the Feeling of Shame and Acknowledging Struggles
Question: I have a son who is refusing to acknowledge that he has all of the same issues you have. He has severe OCD and almost did not return for his senior year. Our family is torn apart by his illness so getting him to admit there’s a problem is our biggest issue. I think he feels shame. Any thoughts as a teen?
Nathan: I felt the same way in regards to the shame because there is a stigma. Thestigma is hard because we do care about what other people are saying and thinking about us. We worry about their opinions. But as I grew into myself, I didn’t really care. It helped share with people more information about myself. The people who did give me crap about my issues, well I moved on from them. But many other people didn’t and they remain my friends.
Dr. O’Hara: The other part of that is empowering our kids. For many years, my son never felt that he had PANS/PANDAS because I really told him repeatedly told him that you can do this, you got this. He felt that it was his own sheer will and determination that got him through it.
How to Decompress/Calm Mind After School
Question: What would help you calm down in the evenings after school?
Julie: He would play on his phone, play video games, watch TV or looking at his baseball card account.
Nathan: It was still tough though. None of that totally calmed me down. But it helped a little.
PANS Anxiety Versus Anxiety
Question: How do you differentiate between anxiety that is stemming from PANS/PANDAS and general anxiety? And does that matter in terms of parenting?
Nathan: Definitely two different things. I don’t really have the anxiety that stems from PANS/PANDAS anymore. I have normal anxiety.
Julie: When you were worse, could you tell the difference?
Nathan: I was not as aware.
Julie: And the thing that is really hard depending upon how sick your child is. When Nathan was really sick, it was all in the same bucket of his illness. It was less about trying to distinguish between the two. It was more of like, when is he a little bit calmer so we can address anything? Now that he is better, he is more accessible and more motivated to deal with the anxiety. But when he was sick, his anxiety was made so much worse by the illness and made worse by the underlying OCD.
It’s really about finding a window when your child’s a little bit calmer, a little bit more accessible, and willing to do some work. So they can listen to what you’re saying about how the OCD brain takes over and that when you push back against the OCD you are loving them and supporting them because every time you reassure, help them with some sort of OCD ritual, you’re really making it worse.
Mold Testing and Remediation
- To test for mold in your home in the Connecticut area, I suggest calling Matt at Healthy Dwellings (www.healthydwellings.com). But mold is also in schools and other places they spend time in. Mycotoxin testing is a urine test.
- I look for mold in most children and certainly any child with Lyme. Lyme biotoxins look similar to mold mycotoxins. If you can’t remediate your home, you absolutely can still do binders or whatever is necessary for that child’s mycotoxin. I have learned a lot from my colleagues in China who have many patients who live in moldy apartments that cannot be remediated.
Julie: We had an HVAC company clean out all our ducts and replace an AC unit. Then a company called Green Solutions in Ossining to spray everything and clean the house down from mold.
Question: What are some things you did that helped that you want to add?
Julie: Staying the course for one. Having open communication with Dr. O’Hara, keeping a log of everything we did, and how it affected Nathan. Changing things slowly so I could be aware of what changes there were in Nathan’s behavior. Then, of course, identifying the mold and the babesia. Treating those and remediating really helped his body receive the IVIG, the helminths, and CBT and better employ the CBT strategies. It was like an opposite snowball. For so long, we were really in hell. But then the snowball started to become smaller and smaller, instead of bigger and bigger. As we did that, we could breathe a little more. It was not perfect; it was still the zig-zag course.
Dr. O’Hara: Remember, this is a functional medicine perspective. It is not this treats tics, this treats anxiety, or this treats sleep issues. It is about looking at root causes and getting at the whole child. We at New England Center for Health, as well as Julian, Nathan, and Gabriella, are all here to help all of you find those answers for your children. It’s not an easy answer. Julie and Nathan have worked very hard, and we are very appreciative of you guys talking to everybody.
Nathan has offered to talk to other children who may need to talk about this. Please email Gabriella with your information, and she will forward it to Nathan and Julie.
3 comments to Case Study – Recovering from PANS, Lyme, CIRS
Melissa OgletreeMay 26, 2020
My 12-yr-old daughter, Kallie, has very severe PANS/AE from lyme/mold/CIRS like Nathan. Thank you for sharing this story.
Brandon HJuly 26, 2020
I’m a 38 year old dentist with the same diagnosis. I was bit by a tick in 2014 but wasn’t symptomatic until the pain from a botched vasectomy in 2015 brought all the symptoms out. I couldn’t imagine seeing a child go through this. It took me 4 years and 127 doctors before a functional medicine doc in Denver found the problem. I got my port last week and get a combo of rocephin and IVIG. Thanks for sharing this story. It’s much more complex of a diagnosis than most primary care doctors can handle and awareness needs to increase.
CourtneyMay 12, 2021
Brandon can you share the name of the doctor who helped you? I’m also your age and in the middle of Tick Borne illness/ mold and pans.