A New Reason to Blog

I was expecting to focus mainly on our experiences in Korea as I've starting blogging again. But it turns out that I have an additional reason to blog. We have discovered that our precious boy has Tourette's Syndrome.

 

We don't have an official diagnosis, so it may seem hasty to make such a pronouncement. But a diagnosis is extremely difficult to get. Most doctors haven't really learned about Tourette's in medical school, and there are not definitive tests that give you a positive diagnosis. And now that we are in Korea, it would be much more difficult to get a diagnosis. But after repeatedly feeling strong impressions to research Tourette's, we have found that it explains everything that this little man has struggled with, seemingly from birth.

 

Because of media representations, most people think of someone shouting obsenities when they think of Tourette's but that only happens in the rarest of cases. The onset is in childhood, and it is almost always accompanied by other challenges like ADHD and OCD.

 

Tourette's explains the entire list of things that our little guy (and consequently we too) has/have struggled with, including:

severe sleep problems, including sleep walking

extreme, debilitating anxiety

lack of impulse control

difficulty with fine motor skills

obsessive thinking

repetitive behaviors

facial and vocal tics that are increasing in severity

inability to hold still

the need to touch things

irresistable urges

constant (and I do meant constant) question asking

and the list goes on......

 

The tics have been going on for years now, and seem to be continuing to worsen - eye blinking, grimacing, shoulder shrugging, neck twitching, etc. With Tourette's they generally worsen until puberty, and then usually start to decrease. At first I didn't think he had vocal tics (which are a basic part of a Tourette's diagnosis), but after researching, I realized that he did. Repetitive throat clearing, sniffing, and similar patterns fall under vocal tics.

Our boy is so sweet and good and extremely intelligent and talented. As we've tried to talk to others about our concerns and struggles, we have almost always received responses along the line of something like this - he is a wonderful boy, and we must be blowing things out of proportion, OR we just don't have realistic expectations of a boy (he has 4 sister and no brothers), OR that we are causing his problems by putting too much pressure on him or treating him like a girl, OR that we are just a little crazy.

One reason for this is that people with Tourette's can control their problem behavior at least somewhat when they are in public. But eventually they have to let it go. (One way to understand this is to compare it to blinking. You may be able to aviod blinking for a while, but eventually you have to give in and blink). And so he has been fairly good at forcing himself to hold still in public - church and school settings, but that causes additional pent up energies and urges that then get acted out at home. So unless you live with him, you don't get a realistic idea of what he/we is/are facing. We once had someone in our home who was shocked by his behavior (and disgusted that we weren't controllig it better). He was literally bouncing off of walls and ceilings. We tried to explain that he was always this way at home. She gave us a disapproving look and said sternly, he isn't that way in primary (our church program for children). At the time, it really caused me to question myself, and I would stand at the door and watch him in primary. He was indeed able to hold still. Why not at home? What did it mean? What were we doing wrong?

As time has gone on, school has become increasingly difficult for him. He has gone from being a straight A student in the gifted and talented programs to consistently bringing home D's and F's. It has been becoming more and more difficult for him to hold still and focus at school. And that has been making him feel badly about himself. So the homeschooling that we are doing in Korea has come at just the right time. I had felt that confirmed to me even before we realized that we were dealing with Tourette's.

We have known that something was different for him since he was a baby. We could tell he was very intelligent, and a remarkable child (and an unbelievably cute one). But something was different. He had jerky repetitive behaviors even as a small baby. And extreme, heart-breaking anxiety no matter what we did to make him feel secure and loved.

He is truly such a good boy, and never wants to disobey or do anything wrong. And when he does, through lack of impulse control or through uncontrolable urges, he is confused and feels so badly about himself. Poor little man.

And of course we feel badly about all the times that we have been impatient - the times that we have scolded him or punished him or raised our voices at him for doing something that he probably couldn't control. And then there are all the times I've asked him in an exasperated voice to STOP clearing his throat or blinking his eyes, or saying the same thing over and over again.

But it does feel good to have a reason for what has been going on, and to be able to find some answers about what we can do.

One book I have been reading had this simple statement:

"Looking after a child with Tourette's Syndrom can be extremely exhausting".

Those few words were so validating. We have been so exhausted for almost 10 years now, and not able to figure out exactly why. We have felt badly about ourselves. We have blamed him. And then we have felt even worse about ourselves for blaming him. He is the son we prayed for and hoped for and dreamed of. We do love him so and are so grateful for him, but we are almost always so tired - especially during his first 3 years when he rarely slept for longer than 30 minutes at a time, day or night. The book then went on to talk about the stress it puts on a marriage and on siblings. Yes, we've all felt that too.

But I am finding peace, and a renewed energy to do whatever we can to help him. And I'll share what we learn on our journey.

 

Related articles

Learning About Tourette's

Comments

[Janna Morrell]

Wow, Julie! What a challenge!! In your researching have you found out anything that can be done for him? Would diet changes or therapy help him? It seems like with the advances in science and medicine there would be even some theories that may help. I subscribe to Dr Daniel Amen's FB page. He is a renowned brain research scientist. I'll see if he has any thoughts on this. I also see that of all the people who could have been his parents he was blessed to come to you and Brock! Good luck!!! Janna

[Julie Stout]

Jana ~ We all went gluten free last summer to see if that would help his symptoms. It did help him, but not as much as we might have hoped. Still a little help is good. And the side benefit was that it completely turned my health around. Right now the only mainstream medical treatments involve heavy duty brain medications with a lot of negative side effects. And they don't always even work. So we are looking at other options first. One doctor has had great success by teaching children with Tourette's to do self hypnosis. That is encouraging. We are looking into that.

[Karen Ouska]

Julie, I am glad you have a name to what has been a frustrating search for answers on how to best help your son.Thank you for sharing your experiences with us.

[Gloria Rodenberg]

How wonderful that you figured it out and can now research and get some answers/help. We will be praying for you! Hugs for Noah-man

[Reiko Tsuchida]

Hi Julie, in here Japan, some doctors say those symptoms will be toned down by checking blood and finding any luck of minerals or vitamins in our body. Once, my body was very tired everyday and kind of depressed, I found out I was luck of iron and essential fatty acid which is very difficult to take from food. That time I was searched those kind of health matter and found out what some doctors say like this http://www.orthomolecular.jp/treat/tic/

Hope you can find something good for him and your family! I was healthy when I live without wheat and my cramps gone. Since then understood that our body is affected by essential nutrient and what we eat. Now I want to try something new: http://jp.iherb.com/Hyland-s-NuAge-Bioplasma-125-Tablets/3808

maybe easier than not eating any bread...

[Julie Stout]

Hi Reiko! We started eating gluten free last summer in hope that it would help Noah's symptoms. And it has helped him - not as much as we hoped, but it has helped. It also turned my health around. I have been developing some serious health problems over the years with autoimmune symptoms, chronic fatigue, fibromyalgia, hair loss, IBS, and many other symptoms. Because we started eating gluten free for Noah, all of my health problems have improved, and some have gone away completely. That has been such a blessing. We will continue to search for help and answers in any way we can and appreciate you sharing your ideas!