My First Born

A lot happened in my first year as a mom. It literally went from fake rainbows and rays of sunshine to his biological father playing the disappearing act by the time it was his first birthday. Within five months after having Adonis I made the decision to end the unhealthy relationship because I wanted to have a better life with my son. I knew that staying in an unhealthy relationship I would not be giving him his best chance.

A few months after his first birthday, I met my now husband, Nico. Since Adonis has been able to say his first words he has known Nico to be his Papa. By the time he was five years old Nico and I were married and Nico was able legally adopt him. By the time he was six years old he became big brother to two little brothers.

Adonis has always been a sweet, creative, empathetic, and charismatic kiddo. He still is in our eyes but something changed in him and we really began to take notice when he was 7yrs old. That year when he was in second grade we noticed he was struggling socially, exhibiting OCD, he was struggling academically, picking eating, and at home he was having these emotional outbursts. Near the end of second grade we just knew that Adonis was really struggling internally.

I mentioned our struggles to my friend and she told me to look into PANS/PANDAS. So I did and literally everything I was reading I thought I was reading a description of my son. So I set up an appointment with his pediatrician, I told her what I thought, and she recommended we do a blood test. Blood tests came back and showed Adonis was suffering from both PANS and PANDAS!

PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome, and it’s when an infectious trigger, environmental factors, and other possible triggers create a misdirected immune response results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, severe restrictive eating,  anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, and more. Adonis was experiencing ALL of these symptoms.

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, and it’s when strep triggers all the symptoms I mentioned above.

Adonis tested positive for strep and mycoplasma pneumonia infection. He also had tested positive for some tick borne illnesses caused by a tick bite. Once we got an official diagnosis we were glad we finally had answers and a treatment plan. We had to restrict his diet- no gluten, dairy, or food dyes, he was on antibiotics and homeopathic medicine. For months it was a struggle, but we noticed his emotional outbursts started to calm down. We thought we were beginning to be out of the woods after almost a year after his diagnosis.

Then the world shutdown because of the Pandemic. So I had him and his brothers home 24/7 and I had to learn to juggle remote learning and running a business full time in the midst of parenting and keeping up with just normal household chores.

I’ll be honest LOTS of tears were shed the last four months of schooling and then throughout the summer. New OCD habits began to form and every day was like walking on egg shells. Anything could set him off with an emotional outburst. He has high anxiety, depression, struggles with sleeping, and is very sensitive to noise. Nearing the last month of summer I’ve had enough. Just the remedies and diet alone were not enough. I broke down via FaceTime with his pediatrician and she recommended that we seek a therapist.

I ended up finding a psychologist who specializes in PANDAS. We were able to get an appointment for a QEEG Brain Map of Adonis’ brain. Within a week we were able to sit down via zoom and go over his results with the psychologist. It was clear that Adonis has had so many flares that really affected his brain and that he is going to need more than just diet change and homeopathic remedies to fix it. Adonis needs Biofeedback therapy and possibly Neurofeedback therapy. She also recommended that he sees an ND that specializes in infectious diseases, but we have decided to stick with our pediatrician who had diagnosed him. Since receiving his results we have been proactive about making sure his diet is being followed, taking the recommended supplements, and making sure he has a routine that he can stick to. We have an IEP in place with the school and his teacher has been so supportive and understanding. We have not been able to do the Biofeedback therapy yet because insurance doesn’t cover it, so we have been trying to save the funds. It’s been tough, his supplements aren’t cheap and following a GF & DF diet isn’t cheap either. Add in the pandemic that has impacted our family financially Nico and I have felt like we’ve been on hamster wheel trying to catch up these past few months.