Haylie’s Story

Haylie is a courageous 9 year-old girl with dreams to become a fashion writer/editor. Her journey with PANS has not stopped her from being her best self and developing into an amazing person, as evidenced by the following interview with her that contains an immense amount of experience and wisdom from the NPYA’s interview with her.

How old were you when you first began experiencing symptoms of PANDAS or PANS, and which disorder do you have?

“I was 7 when I started experiencing symptoms, and I have PANS.”

What symptoms did you have, and which ones do you continue to experience?

“My first symptoms were rage tantrums, overnight onset OCD, the constant need for reassurance, confessions. It morphed to the constant feeling of being “wet” and needing to use the bathroom and not feeling done. The only thing I continue to experience now is an occasional emotional episode and the need for extra reassurance from time to time.”

Explain how PANDAS/PANS has influenced your personality and overall life experience. How have these symptoms impacted your life?

“It has made me become a stronger, tougher person in every way. I know I can do hard things and my resilience makes me a better person.”

Walk us through your medical experience. How many times were you misdiagnosed, how long did it take for you to get correctly diagnosed, and how did you navigate all of this while experiencing your symptoms?

“I am very lucky because my mom knew early on what was going on with me since she works with kids and was familiar with P/P. However, I saw 3 doctors before we got on the right path and I am currently be treated by a PANS specialist who is an Immunologist, a Psychiatrist and a Therapist. Throughout treatment I was seen by a Naturopath, a Holistic P/P Specialist, a Neurologist, a Pediatric Urologist and my Pediatrician. I underwent multiple blood tests, an MRI, an EEG, and other examinations.”

Were you able to receive insurance coverage for your treatment(s)? How hard did you and your family have to fight to get coverage?

“Most of the providers for P/P do not take insurance and my parents are still working to get partial reimbursement from insurance from out of network benefits."

What is the most valuable advice you can offer to others who are in the thick of their PANDAS/PANS symptoms?

“It’s really hard but to try to stay calm. The more worked up you get, the worse the symptoms get. You have to try to breathe and reset yourself, knowing that there is an end to this cycle and that these behaviors are NOT you.”

What is your dream job and vision for your future?

“To be a fashion writer/editor.”

Can you share any strategies or tools that have helped you manage or alleviate your symptoms?

“The best strategies or tools that I have helped me have been tight hugs and deep breaths. As I have been further on the road to recovery I have been able to access more tools."

Were there any particular moments or experiences that made you feel understood or supported during your journey?

“One moment in particular that made me feel understood and supported was when I decided to share what was happening with my best friend. It helped to know that I had someone who was at school with me who knew what I was going through and someone who I could spend time with on weekends that I didn’t feel like I needed to hide from. I still remember the exact day I told her."

Have you found any resources or communities (online or in person) that have been helpful to you as someone with PANDAS/PANS?

“My therapist has been very helpful as a resource because she knows a lot about PANS but I wish there were more resources or a way to connect with kids my age who are going through the same thing. This is what I’m hoping to do with my support group.”

How do you explain PANDAS/PANS to others who may not be familiar with the condition?

“To people who aren’t familiar, I explain PANS as a disorder caused by infections that create inflammation in the brain causing you to have behavioral symptoms.”

Is there any specific moment or turning point in your treatment that gave you hope or made you feel like progress was being made?

“I feel like the biggest turning point that gave me the most hope that progress was being made was when I tested negative for Bartonella this Winter and got to drop one of my meds.”

How do you handle setbacks in your recovery or moments when symptoms flare up again?

“When my symptoms flare up I can feel it now and know I need to take Motrin. I also am super aware of those around me who might be sick so I try to anticipate when I might have a setback.”

How has living with PANDAS/PANS changed the way you view your own health or how you approach overall wellness?

“Having PANS has made me very aware of my own wellness and when those around me are sick. I know how it might affect me so I try my best to stay as healthy as possible. I have been taking vitamins with my meds in order to support my immune system and do what I can to avoid situations that I know might frustrate me, etc.”

How did PANDAS/PANS affect your relationships with family, friends, and peers? How did they respond to your diagnosis and symptoms?

“My family and friends have been so supportive of my diagnosis. Although it has been a very hard road, ultimately I think it has strengthened my relationships with the people who are really important to me.”

What do you wish people understood about living with PANDAS/PANS that they might not see from the outside?

“I wish people understood how complex the disorder is and how we have no control over what is going on inside our brains. I also wish they understood how many medications you must take to treat it and how many different doctors you need to see. It is a lot.”

What do you want other kids or teens experiencing PANDAS/PANS to know about their journey?

“I want other kids to understand that sometimes you might not want to do what the doctors or your parents are telling you to do to get better but you have to do it to get better. There are a lot of steps but you will get better and you will be a stronger person because of it. It is also important to know that this is just one time period and it’s not forever. You will be able to do anything in your life once you are a PANS survivor. I will never be the same, but in a good way.”

Do you have a favorite book, movie, or TV show that helps you escape or relax?

“Project Runway for sure!”

What’s something about yourself that you’re really proud of?

“I am proud of how much I have grown throughout my journey.”

What’s your favorite hobby or activity to do when you’re feeling well?

“I play soccer and lacrosse, and I also sew.”

Haylie, you are a remarkable human being. Thank you for being so tough. You are handling this PANS like a boss, and using it to change the world for the better by sharing your story and making your own support group. You make us smile :) We love you, and we can’t wait to see you change the world even more!

Love,

The NPYA Team