PANDAS / PANS
​Advocacy & Support

In December of 2013 we found a doctor who treated PANDAS/PANS and she immediately diagnosed Kloey with PANDAS. Kloey was started on yet another course of antibiotics for 14 days followed by a steroid burst for seven days, but we only saw about 40-50% improvement. IVIG was not an option for us because we couldn't afford it. Kloey continued to miss school, her behavior, sleep, and sensory issues were spiraling out of control by the day. We were homebound for many months as she had a fear of leaving the house. We later started Neurofeedback therapy and that brought her out of her initial onset. 

In March of 2014 we made a trip to Mayo Clinic. Mayo performed multiple scans on her Kidneys, repeated the VCUG multiple times and found that the reflux had healed. Mayo dismissed Pandas/Pans at that time. She was seen by the children's behavior analyst who had then mentioned Autism. In May of 2014 Kloey was diagnosed with High Functioning Autism. The doctor we saw was five hours away. He ran a stool analysis which later revealed more yeast, a strep infection in her gut and unbalanced gut flora. Her stomach was a mess. 

In July of 2014 we finally found a doctor within a few hours of our home who treated PANDAS/PANS, Autism, and Lyme. Of course our insurance wouldn't cover any of it. This doctor ran extensive lab work. Antibiotics were switched again. Each time her antibiotics were switched I started noticing her behavior becoming out of control. She had rage, aggression, and irritability. She always felt awful and wanted to be left alone. 

In the fall of 2014 we started homeschooling. Around November we saw an improvement in her behavior with a different antibiotic and we decided to give school a try again. Three weeks into school she started flaring again. We discovered that she flares over viruses. Kloey missed 48 days of school her 1st grade year, was home schooled the first nine weeks and was home bound the last nine weeks. In May of 2015 we tested for Lyme. I was tested as well from having multiple illnesses and complications. The tests came back positive. Since trying to treat the Lyme Kloey has started to refuse antibiotics; who wouldn't after being on them since birth?!? Her gut was a mess and we were getting nowhere. So we started researching on how to treat Lyme naturally.

Fall of 2015, we are homeschooling and have no intentions of trying to enroll back in public school at this time. We are working on healing her gut. She has started a new probiotic, a cleanse and supplements. We are slowly seeing improvements. She has worn two long sleeve shirts this past month, she is having somewhat improved bowel movements, she is smiling, and she is not running a fever every day!! We have eliminated so much from her diet but I wouldn't say we are on a specific diet. She has increased her food intake over the old fabulous five. She is sleeping in her bed, she is letting water touch her head in the shower, washing her hands under water & swimming. All of these things were not done two years ago. She is currently working on wearing different types of pants. We are working on her focus & concentration along with restoring her math and spelling abilities. We are working on detoxing and have recently completed re testing for allergies. We are FINALLY getting the yeast under control, it's not gone but we are making improvements.
Our daughter Kloey is now seven years old. Since the day Kloey was born she has struggled with illness. Born with thrush, she was put on Nystatin at three weeks old. At two months of age she started to have constipation. The thrush continued after multiple anti-fungals were rotated for treatment; nothing was working. Each time she received her vaccines she would develop fever, rhinitis, or bronchitis. As a toddler she had many bilateral ear infections, fevers, viral illnesses, thrush, and constipation. At age 2 1/2 while potty training she started having many urniary tract infections. Due to the recurrent fevers and urinary infections they ran a VCUG test and she was later diagnosed with vesicoureteral reflux grade 3, which is when urine backs up into the kidneys instead of emptying into the bladder. The remainder of her preschool years was spent on multiple antibiotics and anti-fungals. We felt like we lived at the doctor—each time Kloey would have multiple accidents or fevers we would have her tested for yet another infection which then resulted in rotating antibiotics. Infections resulted in staphylococcus empidermidis, pseudomonas, citrobacter, E. coli, etc.

In January of 2013 at age at age four our entire family tested positive for Mycoplasma. Kloey was still battling low grade fevers since birth along with thrush, chronic constipation and the vesicoureteral reflux. She then started to complain of her legs hurting and that it was hard to stand and walk at times. Each time I took her to the doctor they would run more labs to rule muscle conditions out, urinalysis to rule out infection, strep swabs, etc. When they came back negative I was told it's viral and to let it run it's course. I remember even sitting in our pediatrician's office asking about Lyme due to the recurrent low grade fever and other symptoms. I was told since there wasn't a known bulls eye rash that she didn't have Lyme and that there was no need to test.
In August of 2013 Kloey started Kindergarten. In October she started to have lots of sensory issues. Clothing didn't feel right and eating became difficult because of different food textures. She began having meltdowns after school, screaming about how it was too loud there, too many children and that they don't listen to the teacher. She would walk in the door and strip off her clothes down to her underwear and each day became more difficult to dress and get to school. She continued to run low grade fevers on a daily basis, she was fatigued and her legs hurt her all the time. She was always getting sick & our hearts just ached for her. In November of 2013 she had a fever over 101.5ºF and I had to immediately take her in to be checked for a urinary infection to prevent any damage to the kidneys. She tested negative for a UTI but she was never checked for any other infection in the body, with the doctors again dismissing it as viral! Later that day Kloey's behavior took a turn for the worse. At first it was her shoes, she couldn't get them tight enough for satisfaction. She was literally cutting off her circulation trying to make them tight. Clothing was too loose or it was touching her ankles or wrists. She started to have Obsessive Compulsive Disorder with any lines, creases, or wrinkles. When she walked she would stop after each step and adjust her pants due to creases. Then she became irritable and would scream and meltdown over her pants "moving" when she walked. The same for any blankets: once a blanket was laid out she freaked out if it had a crease in it. It then affected her hair. She couldn't have her hair touch her face or neck at all. At that time her hair was much shorter and I had to put it up in a million little pony tails just to keep each strand off her face or neck and the pony tails had to be tight and smooth. She would only wear a dance leotard and capri leggings that were extremely tight to prevent any creases when walking or sitting. She started having severe separation anxiety and the school she once loved became a nightmare—she couldn't get out of the car without screaming and having a meltdown, it was as if someone or something was harming her in the building. 

KLOEY's STORY

by Jaclyn Trujillo

FAMILY STORIES

Stories from our members help to let us all know that we are not alone in our efforts to find answers, help our children, and make a difference. 

Struggling with autoimmune issues since birth, but now starting to feel hope
In August of 2013 Kloey started Kindergarten. In October she started to have lots of sensory issues. Clothing didn't feel right and eating became difficult because of different food textures. She began having meltdowns after school, screaming about how it was too loud there, too many children and that they don't listen to the teacher. She would walk in the door and strip off her clothes down to her underwear and each day became more difficult to dress and get to school. She continued to run low grade fevers on a daily basis, she was fatigued and her legs hurt her all the time. She was always getting sick & our hearts just ached for her.