By Jonas’s mother, Ireland
I am writing to share my son’s success story. I hope it inspires others in their search for answers to tics. I also would like to let the team at Latitudes.org know how helpful the website is, and how Sheila Rogers DeMare’s book Natural Treatments for Tics and Tourette’s really turned things around for us.
Jonas was always a happy, well adjusted and grounded boy. Popular with his friends, he was confident in many ways, yet he also had a soft side and was self-aware. We have never noticed difficulties with concentration or attention and, fortunately, he has always done well in school. In short, he is a great lad and I love him!
Jonas is my youngest child. He started having eye tics when he was about 7 or 8 years old. At first we did not look on this as a problem. The tics didn’t bother him and he wasn’t teased. We expected him to grow out of it.
But, by the time he was 11 years old, he started showing signs of frequent head-nodding. This was around the time of a pending move to a big school (from primary to secondary education). These tics were short-lived, lasting for maybe three or four weeks, after which only eye tics continued. However, the eye movements were now more obvious, and they were no longer confined to just eye blinking or stretching. As parents, we were becoming more concerned.
Not understanding the condition, at first we decided not to give in to the tics and we tried to help him stop them. But we soon realized he could not control his “habits,” as we called them. So, we backed off. We just loved Jonas and reassured him.
Then, we watched helplessly as additional habits took hold.
A major change in frequency and severity
It was near the end of the year, six months later. He was 12 now, and the habits were more severe and often.
He had shoulder shrugs, face grimacing, and head nodding. All the tics were very frequent—every few seconds! Then Jonas started having small vocal tics.
My husband and I felt quite sick with worry, and we were concerned that others might start teasing him.
Jonas was aware of the problem and did not like what was happening to him, but he avoided talking about it. Any time he hinted at the difficulty, we used the opportunity to reassure him as best we could,and we could see he took comfort in receiving extra hugs.
We advised one of his school teachers in confidence about the situation. School work and concentration seemed to be alright, and he remained well liked among his peers.We learned that he was apparently suppressing or disguising the habits at school so that they were not too noticeable. Yet I knew they were too severe for him not to have the tics at all. But, as soon as he got into the car at the end of the day, or when he reached our home, he would let go of all his efforts to contain his tics, and we would see the worst of it.
As a family, we continued to ignore the habits as best we could, and we tried to make home a safe place where he could be free from judgement. By now, though, his friends had started commenting on the frequent motor and vocal tics.
It is quite painful for me to think back now on this time period so I can write this. What is a mother’s purpose in life but to protect her child from hurt and harm? It was truly a nightmare for me, and I felt so helpless. Using the internet, I set about educating myself about Tourette syndrome and other tic disorders. The articles I found were not reassuring, in that treatment seemed to involve medication used for schizophrenia, and it was fairly heavy-duty, with side effects. Cognitive behavior therapy was poorly documented, and I was left believing that there was nothing I could do but help Jonas deal with the fallout of his condition.
Finding help and developing a plan
The UK and Scottish support groups, while being informative on the condition, did not have advice on alternative treatments. It is at this point that we followed a link to Latitudes.org that was posted on the Tourette Scotland site, and I thank God for that. There, your Natural Treatments for Tics and Tourette’s book jumped out at both my husband and myself independently – we almost ordered two books!
For the first time I dared to hope that maybe there was something we could do to help our son. The worst that could happen was that I would have a healthier child.
So, mid-January we embarked on the environmental approach described in your book. Our immediate suspects were food additives and the computer/TV. Jonas had recently subscribed to an internet computer game, something he had not bothered with much before that. And, around the holidays he had become insistent on having sweets, crisps (potato chips), unhealthy drinks, and other junk food.
We made a plan for Jonas and asked him to go along with it as best he could. The plan was:
- No computer. TV monitored (sit back, brightness down, 30 minutes at a time)
- No additives, preservatives, MSG, etc. No processed food
- No sweets, crisps, fizzy drinks. Less sugar
- Early nights (He didn’t like going to bed earlier!)
- His bedroom was cleaned out, removing dust
- A new mat in the landing was removed
- He took fish oil supplements
- No perfumed soaps, sprays, etc. were used
Remarkably, after just four to five days we noticed quite an improvement, even though it was hard for Jonas to stick to a strict regime.
In this improved state, a few weeks later Jonas went to a swimming pool. Symptoms immediately increased considerably. Was it excitement or the chlorine?
As you warn in your book, it takes investigative work, and I realize I probably tackled too much at once, so I could not always be sure of what issues were triggers and what were not. But, when you feel desperate to get rid of the symptoms, everywhere you look suddenly seems to be a possibility, something that can make tics worse!
Your chapter “Ten Tips for Success” has helped to guide me in this effort. As a family, we now all eat well. I know that Jonas, as a normal 12 year old at this point, would sneak chocolate bars and bright orange drinks now and then. It is was an act of rebellion, and this rebellion will no doubt get worse as the hormones kick in!
Focusing on the positive
Throughout this effort to reduce tics, we have focused on the positive rather than the lapses. I felt the conflict now was between the need to tackle the habits with a strict approach, and the need from an emotional point of view for normality.
Jonas said once that he did not like talking about it because it made him feel as if he had a disability. I have tried to dispel that by using my explanations of habits. Some sense of normality was achieved by the whole family embarking on the healthy eating program together.
I now went to a nutritionist based in Belfast. We do not have environmental physicians here, as far as I know. I was open to supplements but wanted to have professional advice. She had no experience with tics, but I explained what I knew of the neurological background – neurotransmitters, serotonin, etc., and the environmental theory, along with what I suspected were his food triggers.
She advised me to continue with no food additives (I will never go back to having them in our diet whenever we can avoid them). She gave advice on controlling blood sugar levels by eating slow-release carbs, no sweets, protein with each meal, and xylitol as a supplement, not just as a natural sweetener. Multi-vitamins and minerals were also recommended, along with fish oil and a magnesium and calcium supplement.
Jonas took his supplements without questioning them, apart from complaining about the gross smell of one of them! I have no doubt he could see the benefit of the changes that he made. His sisters wanted to have sweets at home, but we wanted to make sure Jonas did not feel singled out at home as being different. Rather than talk about things, we would just “do.” Meanwhile, everyone in the family thought mum had become a born-again hippy forever, standing at the organic lentil and seeds aisle in the supermarket!
After two to three weeks of the new nutrient approach, symptoms were even less marked. There were fewer motor tics and they were less frequent. We now had mainly head nods and eyebrow lifting. The vocal tics remained, but they were also less noticeable, quieter, and less frequent.
My main suspects remained food additives, computer games, chlorine/chemicals, sugar, tiredness, excitement, talking about it, and heat. As for heat, for a long time Jonas had complained of being too hot when he went to bed. “I’m cooking here!” he would call out. He had a small fan to use in his bedroom. However, we live in a northern climate and typically fans are rarely needed in a house, and no one here has air conditioning. At his request, we did not turn the heat on in his bedroom.
Within a short time, Jonas’s tics had decreased dramatically. His vocal tics diminished so much that I only very occasionally heard them, and that was usually in the evening when he was tired. Motor tics were reduced to occasional neck-stretching or head-nodding (sometimes a slow stretch, chin on chest, sometimes quicker head nods). Because they were not frequent, they were not noticeable unless you were looking for them. His eye tics that had been troublesome for years, were also dramatically reduced.
As time went on, I kept fine-tuning our approach, and I would re-read your book for ideas. My goal was for him was to have no tics. I also read Optimum Nutrition for your Child’s Mind by Patrick Holford and Deborah Colson. I wanted to be sure I was doing everything I could. I wanted to go further in tackling triggers, while also looking at foods that help brain functioning.
As he reached adolescence, I was concerned that hormonal changes would set things off. I still felt vulnerable, with fears of what tomorrow could bring. We had decided not to refer him to a psychiatrist, although I understand that this would seem normal for many others. But because Jonas benefited so much from your approach, his tics were mild and not a problem.
Several years later. . .
We continued with these efforts, always watching and adjusting. It took one year to totally eradicate the tics. I am happy to report that Jonas made it through adolescence without incidence. It has now been several years that Jonas has been tic-free. He is a well adjusted young man with a healthy lifestyle. I am taking the time to write, even though we no longer need help, because I want readers to know that the improvement was due to the changes we all made. It did not just happen! It took planning, effort, and faith. But it was so worth it. Thank you, Latitudes.org and Sheila.
A note from Sheila Rogers DeMare: It always means a great deal to read success stories like this. I am grateful that someone was helped, and am also thankful that this mother took the time to document her account. Invariably, I am reminded how once you have helped your child, you never forget it. You never forget the recovery, and you never forget the emotional pain you went through. For me, it has been more than 25 years, but I can “go back” there in an instant. If you have a success report to share, I hope you will please send it to us through the Latitudes.org/contact page. All information will be kept confidential.