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Please press the play button if you would like to hear music that has inspired me through this very difficult time.
For More Information on PANDAS please refer to the following website: www.pandasnetwork.orgDuring the time that my son Cole was really struggling, it became apparent that there were some very concerning things going on with our oldest son.
When he was in the first grade he got his first strep throat infection. What was strange is that when he got strep throat he had a rapid/overnight onset of vocal and motor tics. His first grade teacher met me at the classroom door one day and asked me if he had "Tourette's Syndrome". It felt like somebody had punched me in the stomach.
After that first infection he got three more strep throat infections over the years. What was interesting is that when he got a strep infection and we would put him on an antibiotic his symptoms would improve.
Unfortunately, after he started to get more strep infections he developed Obsessive Compulsive Disorder (OCD). The OCD caused him to have extreme anxiety, he would obsess over many thing sand then have a compulsion to do something to stop the anxiety.
Over the course of these different strep infections I started searching for more concrete information regarding my son's condition. I took him to many doctors, psychiatrists, psychologists, and therapists. He received every diagnosis under the sun; Anxiety, Depression, High Functioning Autism, Bipolar Disorder, Attention Deficit Disorder, Oppositional Defiant Disorder.
Even though he had many different symptoms of all of these disorders something with each diagnosis did not really fit with Ryan's reactions and behaviors.
I started to research the internet day and night. One day I just googled: strep throat and OCD and I was lead to the National Institute of Mental Health website and read all about PANDAS. PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorder Associated With Streptococcal Infections.
This diagnosis fit Ryan to a T. Even though I knew he had PANDAS it would be quite a few years before I would find the appropriate team of doctors and professionals to appropriately diagnose it and treat it.
This past November my son's symptoms became incapacitating for him. He was afraid of anything that had the number six in it. A tv station, the volume on the tv or the radio. Seeing the number six was a problem but so was 12 because it was 2X6 and 33 because 3+3=6. The spiral of this is endless.
He was also retracing his footsteps all around the house and outside (if I could get him to go outside). He started to touch and retouch objects over and over again. OCD is a debilitating disorder that grabs hold of your very being. I can honestly say that as a mother I have never experienced such intense pain with any other thing that has come up with my kids. As a mother, if you have a child suffering from OCD it is like watching them being tortured by it on a day to day, sometimes moment to moment basis.
The treatment program for Ryan has been very intense and requires a great deal of attention.
He also became afraid to see his reflection in any mirror on or in the glass that was in front of all the pictures in the house. We had to cover all the mirrors and take down all the pictures. We even had to cover our ovens and microwave. Even that was not enough, because he would cry that he could still see his reflection in the stainless steel.
I knew that things were at a breaking point when my son went out for ice cream one night with his Dad. They had to turn back because he was too scared to go. He came back into the house with his elbows and needs breathing. He had literally slithered up the driveway on his hands and knees to avoid seeing his reflection in the windows outside at night.
We had another very sad situation when my 7 year old daughter, Katie was spinning around with a light sword. Ryan begged her not to spin around a sixth time. When she did he dove at her and knocked her down. Luckily, she did not get hurt. After this happened Ryan locked himself in the bathroom crying. When he came out he had blood all over his face, shirt and it was all over the bathroom sink and floor. He had punched himself in the nose continuously until it bled, because he felt so bad that he almost hurt his sister.
This was truly a breaking point for us. At this point we decided to take him to Colorado for a groundbreaking treatment called Intravenous Immune Globulin - (IVIG). This treatment is done quite often for people with other autoimmune diseases like arthritis and multiple sclerosis. But for PANDAS it is still not routinely done. During this process, the child is infused with thousands of healthy adult antibodies. It literally reboots their immune system.
This procedure has helped Ryan so much, but it is still a long healing process.
When he was in the first grade he got his first strep throat infection. What was strange is that when he got strep throat he had a rapid/overnight onset of vocal and motor tics. His first grade teacher met me at the classroom door one day and asked me if he had "Tourette's Syndrome". It felt like somebody had punched me in the stomach.
After that first infection he got three more strep throat infections over the years. What was interesting is that when he got a strep infection and we would put him on an antibiotic his symptoms would improve.
Unfortunately, after he started to get more strep infections he developed Obsessive Compulsive Disorder (OCD). The OCD caused him to have extreme anxiety, he would obsess over many thing sand then have a compulsion to do something to stop the anxiety.
Over the course of these different strep infections I started searching for more concrete information regarding my son's condition. I took him to many doctors, psychiatrists, psychologists, and therapists. He received every diagnosis under the sun; Anxiety, Depression, High Functioning Autism, Bipolar Disorder, Attention Deficit Disorder, Oppositional Defiant Disorder.
Even though he had many different symptoms of all of these disorders something with each diagnosis did not really fit with Ryan's reactions and behaviors.
I started to research the internet day and night. One day I just googled: strep throat and OCD and I was lead to the National Institute of Mental Health website and read all about PANDAS. PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorder Associated With Streptococcal Infections.
This diagnosis fit Ryan to a T. Even though I knew he had PANDAS it would be quite a few years before I would find the appropriate team of doctors and professionals to appropriately diagnose it and treat it.
This past November my son's symptoms became incapacitating for him. He was afraid of anything that had the number six in it. A tv station, the volume on the tv or the radio. Seeing the number six was a problem but so was 12 because it was 2X6 and 33 because 3+3=6. The spiral of this is endless.
He was also retracing his footsteps all around the house and outside (if I could get him to go outside). He started to touch and retouch objects over and over again. OCD is a debilitating disorder that grabs hold of your very being. I can honestly say that as a mother I have never experienced such intense pain with any other thing that has come up with my kids. As a mother, if you have a child suffering from OCD it is like watching them being tortured by it on a day to day, sometimes moment to moment basis.
The treatment program for Ryan has been very intense and requires a great deal of attention.
He also became afraid to see his reflection in any mirror on or in the glass that was in front of all the pictures in the house. We had to cover all the mirrors and take down all the pictures. We even had to cover our ovens and microwave. Even that was not enough, because he would cry that he could still see his reflection in the stainless steel.
I knew that things were at a breaking point when my son went out for ice cream one night with his Dad. They had to turn back because he was too scared to go. He came back into the house with his elbows and needs breathing. He had literally slithered up the driveway on his hands and knees to avoid seeing his reflection in the windows outside at night.
We had another very sad situation when my 7 year old daughter, Katie was spinning around with a light sword. Ryan begged her not to spin around a sixth time. When she did he dove at her and knocked her down. Luckily, she did not get hurt. After this happened Ryan locked himself in the bathroom crying. When he came out he had blood all over his face, shirt and it was all over the bathroom sink and floor. He had punched himself in the nose continuously until it bled, because he felt so bad that he almost hurt his sister.
This was truly a breaking point for us. At this point we decided to take him to Colorado for a groundbreaking treatment called Intravenous Immune Globulin - (IVIG). This treatment is done quite often for people with other autoimmune diseases like arthritis and multiple sclerosis. But for PANDAS it is still not routinely done. During this process, the child is infused with thousands of healthy adult antibodies. It literally reboots their immune system.
This procedure has helped Ryan so much, but it is still a long healing process.
