When Jacob Johnson was six months old, he began constantly clearing his throat and coughing. Although he wouldn’t be diagnosed until he was five years old, those were the first signs of Tourette Syndrome.
Patricia and Christopher Johnson were concerned the enlarged lymph node on baby Jacob’s neck was causing problems with swallowing. They were referred to an ENT doctor who told them the lump would eventually disappear and was not causing any problems.
“Jacob’s doctor told us it was just a childhood habit and not to be concerned,” said Patricia.
Still, the couple continued to look for answers other than ‘childhood habit’ when Jacob continued clearing his throat and coughing every day all day. When Jacob was about four years old, he started to roll his eyes to the back of his head very severely. The Johnsons took their son back to the doctor, who thought Jacob had had a seizure or a brain tumor.
“We were then referred to Children’s Hospital in Milwaukee to a pediatric neurologist,” said Patricia. “The neurologist told us on our very first visit that she thought Jacob had Tourette Syndrome.”
The diagnosis isn’t that easy though. Tourette Syndrome is diagnosed by ruling out other issues such as seizures and tumors. Three criteria must be met. The first is experiencing motor and vocal tics, the second is that the tics must wax and wane, and the third is that the person must have the tics for at least one full year.
“Jacob went through numerous tests to rule out other issues,” said Patricia. “He has had psych-necrological testing, EEG, EKG, MRI, and a CAT scan.”
Jacob was officially diagnosed at the age of five. However, symptoms of Tourettes change and Jacob’s are always changing. Jacob either has had or now has neck tics, shoulder rolls, the need to tap on objects or people, tearing, toe and finger curling, facial flaring, arm flaring, and numerous other motor tics. Some of the motor tics cause a great deal of pain.
Vocal tics for Jacob have gone from the cough and clearing of his throat to a loud screech. He is experiencing Echolalia, which is repeating words he hears or things he reads.
Jacob tried numerous medications, but all but one of them had bad side effects for the youngster. One medication caused Jacob severe dystonic movements in his toes and fingers, meaning they curled and twisted them locked in that position. Christopher would leave work to go home and help Patricia take turns watching Jacob.
“It was so overwhelming, said Patricia. “We ended up finally recording him and took it to his neurologist to let her watch and see if she could suggest to help him through these horrible tics.”
Jacob was taken off the medication immediately, but a week was needed for the medication to work out of his system. Jacob is now considered allergic to all medications that can cause distonia. The only medication Jacob takes is a very low dose to help with his anxiety.
Patricia and Christopher Johnson were concerned the enlarged lymph node on baby Jacob’s neck was causing problems with swallowing. They were referred to an ENT doctor who told them the lump would eventually disappear and was not causing any problems.
“Jacob’s doctor told us it was just a childhood habit and not to be concerned,” said Patricia.
Still, the couple continued to look for answers other than ‘childhood habit’ when Jacob continued clearing his throat and coughing every day all day. When Jacob was about four years old, he started to roll his eyes to the back of his head very severely. The Johnsons took their son back to the doctor, who thought Jacob had had a seizure or a brain tumor.
“We were then referred to Children’s Hospital in Milwaukee to a pediatric neurologist,” said Patricia. “The neurologist told us on our very first visit that she thought Jacob had Tourette Syndrome.”
The diagnosis isn’t that easy though. Tourette Syndrome is diagnosed by ruling out other issues such as seizures and tumors. Three criteria must be met. The first is experiencing motor and vocal tics, the second is that the tics must wax and wane, and the third is that the person must have the tics for at least one full year.
“Jacob went through numerous tests to rule out other issues,” said Patricia. “He has had psych-necrological testing, EEG, EKG, MRI, and a CAT scan.”
Jacob was officially diagnosed at the age of five. However, symptoms of Tourettes change and Jacob’s are always changing. Jacob either has had or now has neck tics, shoulder rolls, the need to tap on objects or people, tearing, toe and finger curling, facial flaring, arm flaring, and numerous other motor tics. Some of the motor tics cause a great deal of pain.
Vocal tics for Jacob have gone from the cough and clearing of his throat to a loud screech. He is experiencing Echolalia, which is repeating words he hears or things he reads.
Jacob tried numerous medications, but all but one of them had bad side effects for the youngster. One medication caused Jacob severe dystonic movements in his toes and fingers, meaning they curled and twisted them locked in that position. Christopher would leave work to go home and help Patricia take turns watching Jacob.
“It was so overwhelming, said Patricia. “We ended up finally recording him and took it to his neurologist to let her watch and see if she could suggest to help him through these horrible tics.”
Jacob was taken off the medication immediately, but a week was needed for the medication to work out of his system. Jacob is now considered allergic to all medications that can cause distonia. The only medication Jacob takes is a very low dose to help with his anxiety.
Jacob Johnson, center, was diagnosed with Tourette Syndrome at the age of five. He and his parents, Christopher and Patricia, are excited that this year’s Creative Dramatics play will focus on disabilities. Jacob helped write the play and will act the role of a student with Tourette Syndrome, who will be ridiculed for his disability but finds a circle of friends who also suffer from a disability, whether it’s a speech impediment, dyslexia, or something physical, such as needing a wheelchair.
The family has lived in Horicon for approximately five years, moving to the City on the Marsh from Beaver Dam. The move has been great for Jacob and his family.
“The Beaver Dam school he was attending didn’t understand what Jacob was going through,” said Christopher. “It got so bad that, even though Jacob didn’t want to leave school, I was researching what we had to do to start home schooling him.”
Other students at Van Brunt Elementary School have been very understanding of Jacob’s Tourette Syndrome tics. Patricia said Youth Ambassador Paige Bani visited the Van Brunt second, third, and fourth graders and gave a presentation of Tourettes, with the help of Jacob.
“Paige got involved because her younger brother has it and her mother runs a support group,” said Patricia.
Jacob is comfortable talking about Tourettes, so much so that he has helped write the script for this year’s Creative Dramatics play. The students in the Horicon district write and act a play each year and it has to focus on problem-solving. Students this year chose children dealing with disabilities as the topic. Deb McGilvra is in charge of the program.
“She approached us to ask our thoughts because we have a child with multiple disabilities,” said Patricia. “She was a little worried that she may offend or hurt someone and wanted to do the play being very real but also being very sensitive to others and their feelings.”
McGilvra didn’t need to worry. Jacob, who will be involved in his third play, was receptive to the idea.
“It was something we discussed when we found out the play was going to be about kids with disabilities and I knew right away I wanted to take part and play, really, myself in the play,” said Jacob. “My family thought it was a great idea and encouraged me to do it.”
Jacob wanted to show what he’d been through in dealing with bullies and people who do not understand the noises he makes or things he says or does.
“We are always pushing him to advocate for himself, and what better way than to tell his story through a play,” said Patricia. “We were also so grateful to Mrs. McGilvra for bringing attention to what kids with disabilities go through during a normal school day.”
Jacob had fun helping to write the script. He said McGilvra was constantly checking with him to make sure he was okay with everything being mentioned. Patricia said McGilvra made it clear that anything Jacob was uncomfortable with would be changed or removed.
McGilvra isn’t the only supporter Jacob has. The 11-year-old said the others involved in Creative Dramatics have always supported him.
“Sage and Destiny and Casey and the others helped calm me down last summer when I was an actor for the first time,” said Jacob. “We are like a big family and everyone is so supportive of me and each other. When the others found out that I was playing a kid with Tourettes, they all clapped. It made me feel confident and excited.”
Outside of school, Jacob is involved in the Tourette Syndrome’s 5K walk, for which he received a ribbon. This year’s walk will take place May 31 at Voyageur Park in De Pere. Jacob met Dave Pittman from American Idol, who has Tourettes. Jacob will attend Camp Duncan this year, which will take place June 22 through 28. He was on hand at a health and safety fair in Oshkosh.
Jacob was surprised to receive a letter from Carolos Guevara, a contestant on X Factor who has Tourettes, thanking Jacob for his support. Jacob continues to correspond with some of Guevara’s family members through Facebook.
Patricia and Christopher hope the Creative Dramatics play will help others understand that although people have disabilities, all have something to contribute.
“I want to show them what Tourettes really is and also, if they meet someone who has Tourettes, they might understand and not judge or laugh at them,” said Jacob.
For more information on Tourette Syndrome, visit www.tsa-wisconsin.org.
“The Beaver Dam school he was attending didn’t understand what Jacob was going through,” said Christopher. “It got so bad that, even though Jacob didn’t want to leave school, I was researching what we had to do to start home schooling him.”
Other students at Van Brunt Elementary School have been very understanding of Jacob’s Tourette Syndrome tics. Patricia said Youth Ambassador Paige Bani visited the Van Brunt second, third, and fourth graders and gave a presentation of Tourettes, with the help of Jacob.
“Paige got involved because her younger brother has it and her mother runs a support group,” said Patricia.
Jacob is comfortable talking about Tourettes, so much so that he has helped write the script for this year’s Creative Dramatics play. The students in the Horicon district write and act a play each year and it has to focus on problem-solving. Students this year chose children dealing with disabilities as the topic. Deb McGilvra is in charge of the program.
“She approached us to ask our thoughts because we have a child with multiple disabilities,” said Patricia. “She was a little worried that she may offend or hurt someone and wanted to do the play being very real but also being very sensitive to others and their feelings.”
McGilvra didn’t need to worry. Jacob, who will be involved in his third play, was receptive to the idea.
“It was something we discussed when we found out the play was going to be about kids with disabilities and I knew right away I wanted to take part and play, really, myself in the play,” said Jacob. “My family thought it was a great idea and encouraged me to do it.”
Jacob wanted to show what he’d been through in dealing with bullies and people who do not understand the noises he makes or things he says or does.
“We are always pushing him to advocate for himself, and what better way than to tell his story through a play,” said Patricia. “We were also so grateful to Mrs. McGilvra for bringing attention to what kids with disabilities go through during a normal school day.”
Jacob had fun helping to write the script. He said McGilvra was constantly checking with him to make sure he was okay with everything being mentioned. Patricia said McGilvra made it clear that anything Jacob was uncomfortable with would be changed or removed.
McGilvra isn’t the only supporter Jacob has. The 11-year-old said the others involved in Creative Dramatics have always supported him.
“Sage and Destiny and Casey and the others helped calm me down last summer when I was an actor for the first time,” said Jacob. “We are like a big family and everyone is so supportive of me and each other. When the others found out that I was playing a kid with Tourettes, they all clapped. It made me feel confident and excited.”
Outside of school, Jacob is involved in the Tourette Syndrome’s 5K walk, for which he received a ribbon. This year’s walk will take place May 31 at Voyageur Park in De Pere. Jacob met Dave Pittman from American Idol, who has Tourettes. Jacob will attend Camp Duncan this year, which will take place June 22 through 28. He was on hand at a health and safety fair in Oshkosh.
Jacob was surprised to receive a letter from Carolos Guevara, a contestant on X Factor who has Tourettes, thanking Jacob for his support. Jacob continues to correspond with some of Guevara’s family members through Facebook.
Patricia and Christopher hope the Creative Dramatics play will help others understand that although people have disabilities, all have something to contribute.
“I want to show them what Tourettes really is and also, if they meet someone who has Tourettes, they might understand and not judge or laugh at them,” said Jacob.
For more information on Tourette Syndrome, visit www.tsa-wisconsin.org.
Preprinted courtesy of Dodge County Pionier
Jacob Johnson poses with Deb McGilvra, who is the leader of Creative Dramatics. The students write a play, create the background, and act the roles. McGilvra made sure throughout the writing of the play that Jacob was comfortable with all aspects. She also wants to make sure the students have fun.
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