Kidnapping Catherine: Our Fight to Get Our Daughter Back

I remember the first day that I really knew something was wrong with Catherine.
 
Prior to that, she was a difficult baby. She had difficulty hitting her milestones, was constantly constipated where she would be up all night screaming. No amount of miralax or pear juice seemed to cure it. It was truly hell on earth.
 
In November of 2015, when Catherine was 1.5 years old, she started with the ear infections. They were constant, and after only a few months, we were referred for tubes. Upon meeting with the ENT, I brought up her speech difficulties, as she was only saying four words, which all sounded the same. She also had a chronic runny nose that would not go away. He suggested Zyrtec and made an appointment for tubes.
 
Once Catherine had her tubes in, we thought her speech would take off, but the ear infections persisted and she seemed to get worse.
 
The day I realized there was something wrong with Catherine, she was pushing her baby doll in her baby stroller. Up and down the sidewalk, she would walk her baby. Occasionally, the stroller would get caught up on an uneven part of the sidewalk and Catherine would throw an all-out temper tantrum because she couldn’t get the stroller to move. I would calmly move the stroller for her, and she would be on her way again. But the fact that she did this, at the age of 2, for more than an hour, was alarming to me. Combined with the fact that she would throw these temper tantrums over something as simple as getting caught up in a part of uneven sidewalk alarmed me even more.

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Catherine on her third birthday, a few weeks before her diagnosis.

Catherine on her first day of school, four months post-diagnosis.

Prior to tubes, Catherine hummed. It was constant, and we thought it was because she was trying to speak, but she just didn’t have the words yet. This, along with my concern for her emotional lability and her obsession with certain things, like sleeping with the light on, or needing her toys arranged just so, encouraged me to seek out specialists, after urging our pediatrician for referrals.
 
The humming increased. The obsessions got worse. Her anxiety was through the roof and her aggression was terrifying. I have had to sign papers acknowledging that she cut a little girls head open by grabbing her by the back of her suspenders and shoving her into a pool table. Not once, but multiple times. We have almost been kicked out of her daycare. I remember our first speech pathology appointment. It lasted 10 minutes because Catherine threw a block at my head and then ran out the door. Our first appointment with a pediatric specialist at a children’s hospital was the same, only this time, she threw a cup at my head, then proceeded to throw herself into the door several times. It seemed as though everyone saw there was something wrong with her, but no one could give me any hope as to how to help her. Mostly, everyone questioned Autism, even though we had her tested twice for it, only to come back with a negative diagnosis.
 
When Catherine was 2.5, we started hearing words. What floored us was that they were complex words that we would never hear again. Things like James, chair, popcorn, all came out clear as day. And then the humming would resume, a constant “hm hm hm” that she even did in her sleep on occasion. These hopeful moments with her vocabulary were fleeting and in January of 2017, we asked to see more specialists: gastroenterologists, pediatric specialists, speech therapists, behavior specialists, and psychologists. Anything that would help our daughter lead a normal life.
 
January of 2017 brought our general downward spiral. We had taken her off Zyrtec at the urging of another mom, and she got better. Then she got worse again. We took dyes out of her diet, thinking possible ADHD, and she got better. Then she got worse again. It was like everything we did to help her only ended up a fruitless endeavor that ripped our hearts out. She had constant tics, terrible balance (which we now know are full-body tics), obsessions over little things, severe separation anxiety, hallucinations, emotional lability, ADHD symptoms, and severe aggression (particularly with children smaller than she was, such as kicking babies in the face). Our daycare provider’s daughter said it best: “It’s like she’s angry with herself all of the time.” She would stare right through you, clearly not understanding what was being said, and would throw horrible rages for hours on end in the middle of the night.
 
Her third birthday was the most heart-wrenching day for this mom. What we thought would be a great celebration was a nightmare. Although her ear infections had persisted, they had evolved into a nasty, green, goopy sludge that would leak from her ear constantly. After our ENT follow-up in January, where he had told us to try and get rid of the “goop,” we had gone on antibiotics, but to no avail. Nothing was helping. At another follow-up in April of 2017, he suggested we culture the “goop” and see what the results were. Our ENT called me on a Sunday afternoon, and left a message saying that Catherine had Group A Strep and to have a blood test done with our pediatrician.
 
The pediatrician did not see a need for a blood test, unless it was to test for possible PANDAS, but that Catherine was too young to have it, so there was no need. She did, however, put us on a “diagnostic antibiotic” to treat the ear infection and see if Catherine’s behaviors got better. (Note: there are no age requirements for PANS. PANDAS is a subset of PANS so please use the PANS requirements even if strep is involved, as the PANDAS criteria are unnecessarily restrictive.)
 
They did! We were so happy! It was like she was a completely different little girl. We could not believe it. But when we called with the results, the pediatrician thought we should seek out another behavior therapist.
 
However, the thought of PANDAS had already buried its way into my mind. It helped that I had a close friend whose 5-year-old son had been diagnosed a month earlier, and I had been learning about PANDAS from her. So I gathered up my courage and simply told our pediatrician that she might be too young for PANDAS, but what was the harm in testing for it?
 
We got the ASO blood test, and her strep titers were 1202. The normal range was <150. We were immediately referred to a pediatric specialist (again), and he took one look at my running google document, where I had written down all of the crazy behaviors and off-the-wall things that were happening to my daughter for the past year and a half, and said without a doubt she was the youngest person he had diagnosed with PANDAS. She also had the highest strep titers he had ever seen.
 
From there, I built my “team” of people. My husband and I sat down and very carefully decided what we wanted from our team of people. We weeded out all the specialists and doctors we had seen from the beginning of her potential onset at 18 months. We sought out a naturopath, because we didn’t want to just put a bandaid on things, we want to stop the bleed. We were very lucky to find an amazing naturopath who truly listens to us. She suggested a gluten-free, dairy-free diet, which we immediately and overwhelmingly started. It was difficult, but at that point, we would do anything to help our daughter.
 
We found an amazing psychologist who has given us a bag of tricks to manage the anxiety Catherine feels. Although she is not well versed in PANDAS, she has done some research and listens to us. Thanks to an Early Intervention program in our state, Catherine was eligible for an IEP and has started 3-year-old preschool with a 1:1 associate, who currently is not needed. School has given her confidence to also help ward off further anxiety. We give her fish oil pills, echinacea, a probiotic, a special jam to help combat any constipation, melatonin for sleep, essential oils at night, and have kept her on the penicillin (250 mg/5 ml) two times per day.

My daughter is a different little girl, only four months post-diagnosis. Gone is the disjunct sign language and she says 2-3 new words per day. Her cognitive function is where it should be for a 3 year old, and the greatest thank you I have received is when she finally said, “I wuv oo, mama” just a few weeks ago. I love you too, little girl.
 
I love you too.