You may already know that I have a son who has several medical issues including Tourette Syndrome. For the last four years we have sought some relief from the tics which have become more extreme over time. Up to today we were working with our pediatrician, my son’s neurologist who takes care of his epilepsy, a clinic that uses non-traditional methods, and a neuropsychologist.
The neurologist hasn’t been convinced that all of the events my son has been having are tics. There is some suspicion that they may be non epileptic seizures, or a combination of both tics and non epileptic seizures. In pursuit of gaining some relief from these events, he referred us to a neuropsychologist. In addition he prescribed, at one time or another, antihypertensive medications, which are medications whose original purpose is for treating high blood pressure. The medications we tried included Clonidine (aka Catapres) and Tenex (aka Guanfacine). Unfortunately the side effects can include sedation, dry mouth, fatigue, headaches and dizziness. The sedation affect wiped out my son and we discontinued using them.
The non-traditional clinic we saw, which was a part of Children’s Hospital, worked with my son to learn bio feedback. My son became really good at this. Unfortunately it didn’t work well with his tics because he needed to do it before the tics started. Once he is caught in a round of tics he can’t concentrate enough to do the bio feedback. The key is to identify triggers and hopefully try the bio feedback when a trigger is recognized. We still try to use this method today, not only for TS, but also when he has to take shots for his diabetes. It is a great way to just calm down.
This non-traditional clinic also had a psychiatrist that specialized in vitamins, minerals and supplements. At one time he recommended that my son take:
Omega 3 Fatty Acids
We did this regime of supplements for about six months. Initially I thought it was working. We actually had two weeks where my son had no tics. We had not experienced this since the tics had started. Unfortunately this happened just before another school year started. Once school started the tics came back with full force.
We continued to work with the neuropsychologist. She was focusing on:
- Identifying triggers for tics
- Identifying tools to use when having tics
- Tools to prevent bouts of tics
- Addressing his anxiety
- Addressing his sensory food issues
It is now four years since the tics started and we really haven’t found any answers. I believe my son has learned how to identify some of the triggers and tries to minimize their effect. He has also started eating different foods, which is a huge accomplishment. I think he would be able to deal with his tics better if he didn’t have to deal with other people and their reaction to the tics, especially in the school setting. School is stressful enough for him, but when he has peers making fun of him, or dealing with adults who are ignorant about Tourette Syndrome, it makes it even more stressful. This last school year my son missed a lot of school. The combination of his tics, diabetes and epilepsy was a lose, lose situation. Due to all of these absences I went on a search for a new specialist for the Tourette Syndrome. Meanwhile the neuropsychologist suggested that we try medications again and was recommending an anxiety medication, even though we tried this in the past with no positive effect.
Meanwhile the school is pressing me to identify something which would change the circumstances at school. They acted like I had a miracle cure up my sleeve and refused to recognize they were the main reason his TS was worse. So, against my judgement, I put my son on the anxiety medication. It took me about a week to get a hold of my senses and I took him off again. There was also a period of time where the school nurse was pushing me to get some type of medication that would take the edge off these long bouts of tics that my son had. She kept sending me names of neurologists, none with any specific expertise, just names. She acted as if we hadn’t already seen doctor after doctor. I also have learned that you just don’t pick names out of a hat. Finding the right doctor is not easy. Once again, against my instinct, we went to a pediatrician and she prescribed Valium. I came to my senses pretty quickly on this one and never used them.
As a note of explanation, I am not against these medications. There are times and people where these medications are not only effective, but necessary. In regard to my son, in the last nine years he has been on numerous medications for his epilepsy. Scary medications. From this experience, I learned that getting the right medication is pretty much a trial and error type of process. My son was already on a medication for his epilepsy that is also used for anxiety. It was a benzodiazepine, which works by decreasing abnormal electrical activity in the brain. Since there were questions about what these events were, I just didn’t want to haphazardly add another anxiety medication on top of the medications he was already on.
It is so frustrating to have an educational system trying to push you toward a medical solution that may not be the best for your child. I finally wrote a letter to the superintendent, principal, nurse and his teacher that we needed to find a different approach here. Drugging my son was not the answer. There are some things we need to accept. The TS is here and we need to deal with it as it is. I don’t have any miracles to make it go away. In addition, it is a fact that with all of the health problems my son has he is going to miss school. We needed to expect it and plan for it. It was my intent to push them into a new approach in educating my son, perhaps even supplying a tutor to keep him on track with his class. Guess what. No one responded to my letter. Finally at the end of the school year his teacher emailed and said she would set up a meeting before the end of the year. I didn’t here from her again. At that point I just wanted to get through the end of school. I would deal with the school before school started again.
Earlier in the year I had started looking for a new doctor that may have some expertise and offer a different direction to deal with the tics. I also wanted someone who would look at the whole picture. A doctor said to me when my son was diagnosed with Type 1 Diabetes that it seems to be all related and is probably an autoimmune problem. Keep in mind my son was dealing with epilepsy, Tourette Syndrome, (possibly nonepileptic seizures), Diabetes, an anxiety disorder, a little OCD, a little Aspergers, a little ADD, and learning disabilities. That is quite a bit for a 12-year-old boy. I am very proud of him for dealing with it all. I am not so sure I could do the same. Up to now each of these medical issues were being addressed independently.
Anyway, I went on a hunt. Thank goodness for the internet. I noticed that if we were located on the east coast there would be more of a selection of doctors. Even though we were near a large city, Minneapolis – St. Paul, there still did not seem to be any experts. So I just started calling hospitals and clinics and requested recommendations. Initially they weren’t much help. After reaching out to 30 or more medical centers I called the University of Minnesota Hospital, and they suggested a doctor. After contacting his office, I found that he had a waiting list and it would be five months before we could see him. That in itself meant something to me. It was obvious that people were seeing him. It was either because there just weren’t that many specialists or he was really good. I decided we would wait and we would find out.
Finally the five months passed by and it was the day for our appointment.
To be continued . . .