by Donna Eisley
Aidan started at a district based preschool program and had severe separation anxiety and would cry frequently. He also got sick all the time with colds and sore throats including strep. He seemed to catch everything; like his immune system could not handle any germs. We were told he needed his tonsils and adenoids removed but we waited as long as we could because of a previously diagnosed heart issue. He was cleared by a cardiologist and finally had his tonsils and adenoids removed at age five. We were told by the ear nose and throat doctor that his adenoids were so impacted and infected and his tonsils so large that is was difficult to remove them. He had a horrible recovery which lasted longer than two weeks.
At this point Aidan seemed like every other child, but when he started kindergarten, the teacher began telling us he was having tics and crying in class. I couldn't believe it because we did not see any of these behaviors at home. He missed a lot of days due to either illness or his crying to not want to go. He was receiving speech services so at his IEP meeting the school psychologist suggested we needed further evaluation and that he could possibly need medication. We allowed the school to do an evaluation in second grade because he became worse. He never had a behavior issue, it was always only unexplained anxiety and crying. He could not complete classwork without breaking down. After the school evaluated him they told us he had ADHD with anxiety disorder and they again suggested we consider medicating him. We were very against medicating our child just so he could comply in school because we were seeing a different child at home.
In third grade we took Aidan to a neuropsychologist who also said he had ADHD, depression, and anxiety disorder basically because I told him what the school said. He did a brief exam and determined that he did not have any neurological issues. In the meantime, we also visited his pediatrician repeatedly for frequent unexplained fevers and illnesses. I asked for blood tests and the doctors kept telling me that it was just an illness that was going around and he would be fine. School continued to be difficult for Aidan. I received phone calls daily telling me he was at the nurse or office crying and they could not get him to do any school work. At his IEP meeting the teacher even began crying and told us that Aidan was acting like he was being "tortured" in his own mind and should be heavily medicated and in therapy. We gave in and took him to a psychiatrist who put Aidan on Prozac and to a neurologist who put him on Ritalin.
At first Aidan seemed to react differently to the Prozac, but that changed drastically very quickly. He reacted horribly with increased anxiety to the Ritalin and it was changed to Adderall which made him bounce off the walls. This is when Aidan began saying that he did not want to live like this any more. He was sick of doctors and meetings, and he was getting frustrated because it did not seem like anything was working. The school began labeling him as suicidal. I received calls daily, at work and at home, telling me they could not deal with Aidan, and that he was now threatening to hurt himself. We took Aidan off the Adderall which made his anxiety worse, but he remained on the Prozac until 5th grade. This is when the tics were becoming more and more frequent and his anxiety had now developed into OCD behaviors that were becoming out of control. He started with a neck tic then progressed through different ones that changed often. He was refusing to go to school, and when he did make it, they would call me within two hours to let me know he was at the nurse or in the office. They would isolate him during the school day when he began showing any stress. They also singled him out by moving his desk by itself in the classroom.
The neuropsychologist diagnosed Aidan with Tourette Syndrome and put him on Clonidine and Kapvay. He was having horrible side effects from the medications, from muscle spasms to no appetite. He began losing a lot of weight. On his 11th birthday, he made it to school, but they called me by 11 AM to tell me that Aidan had threatened to stab himself with a pencil. When I got to the school Aidan was crying and repeatedly saying, “I do not want to live like this anymore. I can't take it.” I found out he had made a motion with an unsharpened pencil that looked like a stabbing gesture, but it was actually a gross motor tic. They incorrectly assumed he wanted to stab himself. I met with the principal and counselor who determined that he was not suicidal, but very upset with how he was feeling. They recommended I take him to the hospital to be evaluated. I agreed that I would follow up with his psychiatrist when I got home. I was very concerned about the side effects and worsening condition that Aidan was experiencing. We decided to take Aidan to Provena Health Behavioral Services the next day. They decided to admit him for inpatient due to his crying and complaining that he did not want to live. I kept insisting that he was not suicidal, but was frustrated because no one was helping him feel better and the medicine was making him worse. I agreed to an outpatient program. He was completely traumatized by this. There were kids in there with behavior issues that Aidan started copying. The doctors there then diagnosed him with Aspergers/Autism and put him on Ativan. We pulled him out after two days because he began throwing things and becoming violent.
We changed psychiatrists to see if we could get help with the neuropsych’s new diagnosis. We found a doctor who specialized in anxiety disorders, as well as Tourette Syndrome. He prescribed Klonopin and switched Aidan’s Prozac to Lexapro. These medicines made Aidan even worse. His tics were becoming more frequent and violent. He was having hallucinations and muscle spasms daily. We then became involved in a study our doctor recommended Aidan for. They gave him an experimental medication for Tourettes over a 10 day period, and had him do repeated blood draws and painful IV insertions over a two day span. They would video tape him and make him sit still for 10 minute periods without moving or talking. The doctor kept telling me that this was all necessary to help treat his condition. The medicine did not work on his symptoms and he began to get worse. The experience was highly traumatizing for Aidan. We also had a brain scan done to rule out any abnormalities. It came back negative.
We mentioned PANDAS to the doctor and he said that it was “not founded and would not help Aidan.” He then tried multiple meds like Seroquel, Abilify, Kapvay, Klonopin, and finally Haldol. All these medicines just poisoned his system and made his condition worse.
Through it all we attempted to keep Aidan living as normally as possible at school. They recommended placement in a self contained classroom and not with his peers. We tried this for a brief period and found out they were basically putting him in the quiet room repeatedly through out the day by himself when he began to have tics or cried. We then pulled Aidan out to home school him April of 2015. He was not getting any education at all, and luckily he would take standardized tests and score higher than his peers. We felt that bought us some time to get him well.
We continued his therapy with a counselor and the doctor, but he just kept getting worse and worse. He began scraping at his skin until he bled. He would hit himself and me during a tic episode. We could no longer leave the house or do any school work because I could not get him to focus for more than five minutes at a time. We then asked his doctor again about blood work for strep. He refused saying he was not comfortable doing those kind of tests. We asked our pediatrician as well and he also refused.
At this point my husband found information on Facebook directing us to Kate at PANDAS/PANS Advocacy and Support who was able to put us in touch with Dr Kovacevic. He immediately determined that Aidan was suffering from PANDAS. We had the blood work done finally, and Aidan's strep levels were over 1,150 (< 200 is considered normal). We did a round of antibiotics and Aidan has shown good improvement. He is no longer self injuring, and his tics have subsided to only a handful per day. He still suffers from severe OCD, but we are hopeful the IVIG treatment we are scheduled for soon will help. We now have some glimpses of our intelligent and loving son who we haven't seen in so long. It is wonderful. It will be a long ride but at least we have a light at the end of the tunnel.
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.