When our oldest son was born, we had high hopes of having a beautiful healthy baby boy. Max was definitely a stunningly handsome fellow. Looking back, he was already immune compromised at birth. He had thrush at 6 weeks old that would not clear up even with the strongest anti-fungal medication. This was our first sign of immune dysregulation. From six weeks of age until age six our son was on some type of antibiotic almost every month of his life. As a nurse, I kept questioning why this was happening and neither of the 2 pediatricians we saw in that 6-year span of his life could give me a reason. We were very frustrated and upset about his constant battle with sinus, ear and throat infections.
Having a new baby in 2007, seemed to tip off some extreme jealousy, rage and OCD in Max. He was suddenly a different child. Max went from sweet and loving, to this child that was distant, angry, controlling, and worst of all, violent. He could rage for up to 2-3 hours. He would self-injure by scratching his face or hitting himself in the head. He would growl and make these animalistic sounds that I had never heard him make. He would lash out at us and scratch and hit his brother and us. It really seemed like he hated him and not the usual sibling jealousy. A year later, Max was diagnosed with autism spectrum disorder. I didn't believe that this was "just autism". We started him on basic biomedical protocol with a DAN doctor that was located in our state. He was allergic to several foods and once we removed those foods, he became less locked in his own world. He also was prescribed B12, cod liver oil, probiotics and special high dose multi-vitamins. He started developmental pre-K and started to talk more and interact some with his peers.
Our younger son, Parker hated people. He would throw himself down and hurt himself if he didn't want to do something. He head banged and screamed throughout the day. His OCD was so severe that if we went the “wrong way” to the store he would try to kick the windows out. Life was a battlefield. He never slept. In October of 2010, he was also diagnosed with autism. We were devastated. How could we raise two kids with autism? Parker joined his brother in the biomedical treatment of autism. When we removed the foods Parker was allergic to and started developmental pre-k, he started talking and interacting with us more. We were hopeful that things were going to get better.
In 2010, the boys had so much rage, aggression and extreme OCD. We hardly ever left the house because Parker hated to go anywhere. He was a flight risk. Every time we left he would elope. We were constantly on alert. We had to install special locks high in the doorframes to keep him from running away. When we took him in the car, he would rage so bad that he almost kicked out the windows on several occasions. Max would get so mad on the car rides they would attack each other and punch each other on the car rides. We were basically shut-ins for months.
Our daughter was a normally developing child. But that changed soon after she turned 6 years old when we saw a rapid rise in anxiety and agitation. We had no idea what the cause was or what to do about it. Shortly after these symptoms started, she was diagnosed with sleep apnea and her tonsils and adenoids were removed to help alleviate it. Her anxiety and agitation remitted completely and suddenly. However, as we had not heard of PANS at this point, no correlation between cessation of symptoms and the tonsillectomy were made.
We had four good years after that but then at the age of 10, things really started to decline quickly again. We saw the fast emergence of severe OCD, higher anxiety, extreme separation anxiety, depression and tics. Our child had completely changed once again. By the end of 4th grade she was no longer able to attend school.
DIAGNOSIS & TREATMENT
During the year, she received several misdiagnoses, which resulted in being prescribed several medications that not only were ineffective but made symptoms worse. Thankfully, our integrative psychiatrist determined that she had a neuro-immune based disorder. She encouraged us to travel out of state to see a neurologist who specializes in PANS. This neurologist was our “hero” and started her on the road to wellness. First, he prescribed antibiotics, which helped tremendously, but the benefits were not long lasting. Next we did a prednisone burst and it helped even more, but the results were short acting as they often only temporarily tamper inflammation.
We eventually worked with another specialist who prescribed our daughter IVIG, and that was the start of even more healing. For our daughter, it took many IVIGs and not just one. She had significant improvement after the first round; anxiety and depression were the two symptoms that were alleviated the most. However, after about 10 weeks she would decline again and symptoms would increase. So she would do another round of IVIG.
Even with tremendous gains, we knew there was a missing piece to her healing. We returned to integrative medicine with now our third PANS specialist. She was put on a strict gluten free, diary free and sugar free diet. We saw more improvements, specifically a dramatic decrease in anger, hyperactivity; she lost weight and her mood was much more stable. However she needed two more rounds of high dose IVIG. The integrative medicine doctor chose to administer two more doses but instead of waiting for a decline, only allowed 7 weeks between doses. After these dietary changes and two additional rounds of IVIG, OCD was the one remaining symptom. OCD was not constant but it continued to cycle. She would get waves of OCD along with very intrusive and scary thoughts every 24 hours, starting at about 5:00pm and would last one-two hours.
She was then diagnosed with Bartonella and was treated with two prescriptions: Azithromycin and Rifampin. Several natural antibacterials and antivirals were added to the regimen including Olive Leaf Extract. Within two weeks of treating Bartonella, her OCD was almost completely gone. Since she has been treated for Bartonella, she has not needed another IVIG. All in all, her doctors said we have been treating Strep (documented), Mycoplasma, congenital Lyme and Bartonella.
Currently at age 15, my daughter is really starting to get her life back. She is a competitive gymnast and is taking an improv class. She is homeschooled and is getting straight A’s. She is still on a very strict diet, and we are now using supplements to support her immune system so she continues stay healthy.
It has been a difficult ride, and our story is more complex than most. Our wishes are that kids will be diagnosed much more quickly and treated with more accuracy.
My son is an amazing, passionate, sweet, sensitive boy. As a baby, unlike our daughter, he had low energy and always seemed a little down. At about 7 years old he began having rages in his room, throwing things and screaming. A Neuropsychologist diagnosed him with anxiety. In subsequent years, other symptoms began to arise: vocal and motor tics, obsessive thoughts, and his moods were all over the place, from depressed to manic at times. I was sick in my heart that at 7 years old he was receiving therapy for depression, anxiety, OCD, and emotional lability. Other changes we noticed, but didn’t realize at the time were PANS symptoms, were the urge to urinate frequently and unusual gait. One of his OCD manifestations was the compulsion to confess trivialities. Two different neurologists diagnosed him with Tourette’s syndrome. It got to the point where the therapy wasn’t enough: he started talking about hurting himself; his self-esteem was low and wasn’t making many connections with other children. Some of his journal entries included the following:
By the time he was 11, my husband and I reluctantly decided the time had come for him to start medication. We were hesitant and afraid, but were willing to do anything. His Neuropsychologist was familiar with PANDAS and referred me to a Psychiatric Nurse who treated children with PANDAS. At the time I really didn’t think he had PANDAS because everything I had read stated that it had to be an abrupt overnight change and his symptoms seemed mild in comparison to other children. I did not realize that his “abrupt” change could have happened back when he was 7 and having his rages. The Psychiatric Nurse met with my husband and I for two hours and then with my son for an hour and a half, asking all kinds of questions, trying to figure out the big picture. She was a Godsend. Based on those interviews, she chose to do further blood work as well. At this point my son had never had pneumonia or strep throat. His test came back very high for Strep and for Mycoplasma Pneumonia. His Lyme test came back negative. I did not realize at the time that the routine Lyme testing often comes back as a false negative.
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