A Long Slow Road to PANS PANDAS Recovery

Note from ASPIRE:

PANS PANDAS treatment is three-pronged – A-Treat the root of inflammation (infection), B-Treat the dysregulated immune system & inflammation, C-Treat symptoms with therapy and medications as needed. Sounds simple? Not always. Sometimes figuring out the correct combination of medications and the correct timing of therapy (CBT/ERP) is incredibly difficult. Some providers who are not PANS PANDAS literate often dismiss the diagnosis if improvements are not seen quickly with one trial of antibiotics, which is an incredible disservice to the patient. As you will see in Sylvie’s journey, she had to try many different antibiotics and other medications and supplements to find the ones that would address all of her infections. You will also see the importance of therapy and the equal importance of the correct timing of that therapy. One can’t simply dive into CBT and ERP while the brain is still inflamed; rather, Parent Management Techniques (PMT) can be learned so as not to feed the OCD beast while necessary medical treatments are put in place and given adequate time to work. Often, patients need a long slow combination of treatments before healing really happens and lasts; we do not always get the single game-changer that turns everything around.

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Sylvie was a lively happy little girl. She was easygoing and easy to spend time with. She had no issues with language or words and found great pleasure in food and music. Her oldest brother had some generalized anxiety, so we were on the lookout for any telltale signs but we got much more than anticipated.

Around 4th grade, Sylvie was at a friend’s house, and I received a call that she wanted to come home. She was scared as she had seen something upsetting on TV; turns out it was a cat that had fallen from a roof and broken its leg. It was a little strange that she had such a strong reaction, and afterward, she was withdrawn. Soon after, Sylvie came home from school and said she could no longer eat because she was afraid of choking and dying. She loved food and, prior to this, ate with gusto. We struggled and cajoled her into eating; the whole family got involved, and after about two weeks of extremely slow eating and chewing, she got back to somewhat normal.

Then a variety of worries started. She wasn’t herself. She was scared a lot of the time. She worried at night, she worried during the day – her face was not as smiley as before. She peed spontaneously in her pants a couple of times, which was strange too. She was extremely anxious about throwing up (which we now know is very common in PANS PANDAS), and that made eating even foods she loved hard also. She was so torn. I remember leaving a special restaurant known for its famous dessert because she was so upset by her eating fears. She couldn’t eat it as she was afraid, but she was also incredibly sad about it. We left the restaurant with her in tears and our sons baffled.

Then her fears became more fanatical. She worried that werewolves were coming to get her. She once came into our room in the night crying about them – and when we invited her into bed, she cried and cried, asking what if we, her parents, turned into werewolves. We continually promised that her fears were not real, that they would not come true, that she was safe.

After that, most of her obsessive-compulsive issues surrounded language and rituals. She couldn’t say most colors and wouldn’t name any animals. She had words she needed to “reverse” in her head like if she saw a dead-end sign, she compulsively had to recite other words silently so “she wouldn’t die.” She wouldn’t write certain words such as murder and anything related to death, but also idiosyncratic categories such as water and liquids. She wouldn’t wear orange. She was afraid of Frisbees. She couldn’t walk on certain areas of the carpet in our house and had to touch the wall while going upstairs, etc. She picked her fingernails all the way down.

We went to therapy. We saw a few therapists and eventually found one that Sylvie liked who told us that Sylvie had moderate OCD, but she couldn’t really help. We searched and found another therapist that Sylvie connected with. She developed more fears – mostly related to language. She got so down and scared; eventually, we put her on an SSRI. It helped lighten her mood a little but didn’t get to the crux of the OCD.

At this time, she developed a new fear that was worse than the others; she now had “breathing worries.” She was afraid she couldn’t or wouldn’t be able to breathe. She started to take deep inhalations, and anytime someone tried to show her how to belly breathe, it backfired. She did CBT therapy, going several times a week in the summer, and once a week during the school year – it didn’t seem to help. She said no one understood her breathing and how it feels not to get enough air – and she would get hysterical. We took some breaks from therapy because it was so frustrating but would resume later for a couple of years while Sylvie muddled along. She struggled at the dentist; braces and fillings were very difficult. She had to get a root canal and then plastic surgery because she was hit with a softball in the mouth; it was awful. But, she seemed to get through things, albeit devoting a lot of time to satisfying her rituals.

In the winter of 2015 (she was 16), Sylvie really started to have major troubles. She had extreme fear, agitation, and continued worries about breathing. All the time, she would say, “I feel like I can’t breathe” – and at times shout it, and then she would have a panic attack – and she would hyperventilate. Symptoms spiraled from there. She continued with panic attacks and then developed tics. Vocal and motor tics included her breathing tic, coughing, turning her head, rolling her neck, looking up, moving out her elbows, making swallowing sounds, pursing her lips. And the breathing tic often brought on a panic attack because she was depriving herself of oxygen. Her nurse practitioner, who has treated Sylvie her whole little life, noticed that she was looking and acting differently at her well visit and evaluated her for PANDAS. Her numbers came back positive, high for strep.

We then went to a specialist who ordered the Cunningham Panel for Sylvie. The test results were overwhelmingly positive for PANS/inflammation. At that point, the doctor told us to consider a tonsillectomy and put her on long-term antibiotics. We went to another physician that fall; he did more testing and found Bartonella and Mycoplasma. The doctor put Sylvie on several different antibiotics and eventually an anti-parasitic as her symptoms also seemed consistent with Babesia, particularly the breathing issues. He also recommended against the tonsillectomy. In the winter of 2016, she had about 25 panic attacks over eight weeks. Our doctor changed the antibiotics in January, and then she didn’t have a panic attack for a month but then had on a couple over the following several months. At that time, we saw that the antibiotics alleviated some of her symptoms, which was encouraging. But all of her other symptoms, including tics and OCD, remained unchanged; those antibiotics were not enough. Our physician said therapy, including CBT and ERP, would be difficult and not advisable while her brain was still so inflamed.

Sylvie continued with her breathing worries and told us several times a day that she couldn’t breathe. She often texted from school, saying she was dizzy and felt sick. We had to get her a 504 plan with an accommodation that allowed her to leave the classroom to see the school psychologist during the day. She had a hard time with exercise because it mimics that feeling of being out of breath, which was a problematic sensation for her. Her tics remained at heightened levels. She reported that most of the day, she had worries. We continued treatment but with different antibiotics.

In the summer of 2017, we went to see an integrative physician who we heard would be a helpful addition to our team and would work in conjunction with our original physician. She diagnosed Sylvie with PANS and POTS, and Bartonella. She tried several supplements with Sylvie and changed the antibiotics. We saw some positive changes that fall, but again, she became more agitated than not. She was still ticking, often worried and unhappy. She developed a severe phobia of flying as well. We then did 5 IVIG treatments – and that didn’t seem to help, at least not right away.

In January (2018), the panic attacks were more frequent, once or twice a week, and each episode lasted longer. She was often focused on food poisoning or getting sick, fainting, or dying. And she was terrified of throwing up or passing out. She had separation anxiety. She also felt hopeless. She began to pull away socially as she feared having a panic attack when we were not around.

We then took her for a consult to see another doctor in Feb 2018; I moved from one physician to the next trying to find help. I felt like I was drowning. I was willing to try anything (sadly). We started more oral and IV supplements and weaned off the antibiotics. Sylvie continued to get worse and worse. Her feelings and anxiety about over-breathing were severe and extreme at times. She started to have these panic sessions almost every day. She was afraid to shower. She would yell for help and scream and take big gulps of air, and she was extremely agitated.

We then went to a neurologist in NYC who ran more tests and put her back on antibiotics plus something for Babesia, which we still suspected to be a culprit. We slowly saw Sylvie’s symptoms trend towards better (after the first two weeks of medication) with fewer panic attack sessions and feeling a tiny bit of a break. Then neurologist switched Sylvie meds up again to keep trying for more improvement.

Sylvie tried CBT therapy again because we knew more had to be done, but after two good sessions, she developed a habit of having a panic session in the car on the way there. So that by the time we got there, she was unable to participate in the therapy. She would just scream and cry and gulp for air.

On the afternoon of Friday, 6/8/18 through Sunday, things got worse in a very different way. She had sustained panic attacks for almost the whole weekend. She was screaming and crying virtually around the clock about her constant feelings of an overwhelming sense of not being able to breathe. She ticked and gulped for air constantly. It was a vicious cycle; she would cycle like this for one to three hours at a time. She was super agitated and having a hard time sleeping and functioning. Before this, we saw an hour at a time like this – but that weekend was different with longer and more intense periods of agitation and fear. It was devastating. Even during her “calmer” states, she was agitated. Her OCD and ticking were worse than ever. Her fear of not being able to breathe was intense. She was afraid to exercise, and during this intense period, showering scared her.

She got very warm at times (she still does); she has hot flashes and has a hard time in any heat. Being in a hot room or feeling hot can bring on panic. She sweats more quickly than others and seems to feel the heat more intensely.

Surprisingly she did well in high school without crazy effort, and even when she feels out of sorts, she manages to do well.

At that time, Sylvie’s therapist encouraged us to look for inpatient treatment or an intensive outpatient facility for OCD, panic, and tics. Her psychiatrist agreed and said we should try a different medication, so she slowly tapered off her current SSRI and switched to another.

She was accepted into a behavioral health program focusing on OCD, tics, and anxiety, which she started on July 16, 2018. She attended this intensive outpatient treatment from 8:30 am to 3 pm every day for seven weeks. She worked hard during the summer with a commitment to getting better. She had a variety of exposures to face every day. She was diligent. She made friends and actually didn’t seem to mind going. We are not sure the extent of how much this program helped. We learned about how we had been accommodating her OCD and how we inadvertently made things worse by providing reassurances for her OCD. And she learned some tools from therapy – but she remained stuck with the same symptoms – air hunger, dysregulated breathing, fear of anaphylaxis, fear of panic, fear of throwing up, some separation anxiety and tics that hamper her ability to be quiet and that often end up hurting her body at times from repetition.

At that time, her integrative doctor supported her and cheered us on. We tried some herbs, Cowden protocol, and probiotics in addition to the antibiotics. Once she completed the intensive Behavioral Health Program, she participated in ERP and went twice weekly. We saw her push herself more against her OCD by doing things she had prevented herself from participating in previously. It allowed her to have somewhat of a normal senior year in high school, which was incredible.

In April 2019, we sat tight. She had been on the same medications for several months. We worked with the pediatric office, integrative physician, therapist, and psychiatrist. She got into college – and went last year and had a very successful time there until COVID. She was active, thriving, making friends, and exploring life. She was exposed to people throwing up during college and managed not to have a panic attack even as her roommate threw up in her room while she was in there! We all laugh about this as it was a major exposure for her! When she was home this past spring/summer because of COVID, she weaned off the antibiotics and most of the supplements. She continues with the SSRI.

As you can see from this long story, Sylvie slowly improved with the help of many different treatments. Today she is less ticky. She has not had a panic attack in a very long time. She can fly without panic, which is remarkable. I’m not sure which treatment is/was the most effective, or if it was the combination of all of them plus time to allow them to actually work – the antibiotics, the antivirals, the IVIG, the anti-parasitics, the herbs, our Parent Management Techniques, the SSRI, or the summer intensive behavioral health program. It’s really hard to know. But we are thankful – so thankful that she is here and present, making friends driving and dancing. I didn’t think this was possible for her. I really didn’t. Follow your gut, don’t lose hope, reach out to support groups. It’s easy to go down some rabbit holes (I did) but keep going back, trying again or trying something else.