New treatment for B...new hope...

It has been about two weeks since I took B to see Dr. Elizabeth Laurenson, ND. First of all, what is an "ND" or Naturopathic doctor? This link explains it: http://www.nawellness.com/what-is-the-difference-between-an-nd-and-an-md-2/ .

Why did we go to Dr. Laurenson? B was diagnosed in November 2012. This past November, two years later, his tics started to get worse. It started to effect him at school and his peers were reacting to them. One time we were in a grocery store and he was ticking, I didn't realize how bad it was, but another child said something and B wanted to go home, to leave the store, NOW. He was so embarrassed. That is when I knew we had to do something different. The oil and massage and dietary things we had been doing for him just were not enough anymore. I started to pray and do a lot of research. It became almost a full time job.

We talked to B's primary doctor and told him our concerns about giving B chemical drugs that can alter his brain at such a young and developing stage. His doctor listened to our concerns and was very sympathetic to us and encouraged us to see a naturopathic doctor first to see if we can treat B that way. I really appreciated his openness.

We have done a lot of research about the different drugs available for tourrette's patients and, quite frankly, the side effects were scary to us. Then one night I had a dream where B, as an adult, came to me. He was so depressed and told me that he would rather of had his tics to deal with then all of the side effects that he now has to cope with for his entire life. It broke my heart, I woke up crying, and it still haunts me. I had been praying as to what I should do for our son and that night I believe I received a very clear answer. We need to try natural remedies for him first.

*On a side note, I do not intend to offend anyone. We do have a variety of inherited diseases and health problems that run on both sides of B's family that make taking medicines and dealing with side effects a little more tricky. Certain drugs that would have minor side effects for some people could be seriously life altering in a negative way or even life threatening for B either immediately or eventually. I am not, in any way, saying that people should not take medications or that parents who treat their children with prescription drugs are doing anything wrong. Every child and every case is unique and it is between the patient, parents, and team of doctors to decide what is best. I am a "whole picture" type of person and believe in traditional medicine as much as I believe in modern medicine. However, for our B and his particular needs and situation, this is what we feel is best for him.  

I contacted a clinic in Albany, and they could not get us in until July. Then after a few weeks, I learned of Dr. Laurenson in Corvallis and they could get us in at the end of March! So we went in and talked with her. She started him on several supplements and then will see him back in three months.  Here is what we are doing for him:

250MG Magnesium powder...

500mg fish oils...

1,000 units of vitamin D

25-50mg B6 (in a B complex)...

.25ml Tic Tamer (tm)...

Probiotic powder - a pinch sprinkled on food once a day

 

B's teacher and we have seen improvements in his tics, his restlessness, and his ability to focus almost immediately. It has been quite amazing. 

He still struggles a little bit with OCD. He will take forever to finish assignments because he will erase a word five times because it was not neat enough, even though it was already almost perfect. Hopefully, that will come with time. 

For now, we feel like we can breath and there is hope for B. He is doing really good and finally has been able to get a little break from his tics. They are still there and some days are more than others, but overall he is doing much better. As a mother, I have been very happy with this new treatment and only pray that it will continue to work for our sweet B.

Help via Facebook....thanks Jerry!

Recently I joined a facebook page entitled "Tourette's Syndrome Support Group". Some days it really helps me and gives me hope, other days it sends me to tears. There was an exchange I recently had with a man on the page that has been sticking with me a lot and I wanted to share it on my blog so that I could easily refer back to it when needed and maybe other's will find it useful too...


I had posted:
Check out this graphic I found. It states that 55.9% of people grow out of it?! Has anyone ever heard of this statistic? Does anyone know of anyone who has outgrown their tics?!
http://www.canadadrugcenter.com/images/tourettes.jpg

Then a ways down the comment thread, a man named Jerry came on and said that some people's tics fade, but his did not. Other people commented and told him how sorry they were that he still struggles with them. They asked if he has tried anything that has helped his tics.
 
Gerry Responded: exercise and meditation help. Tried acupuncture for awhile which seemed to help. But stopped doing it. I guess the bottom line is I don't care anymore. I've twitched for the last 45 years. I'll twitch for the next 45. So what? Life is good.

Another woman, Cindi, commented right after him and said:I love your attitude and it really does come down to how YOU feel about it. Thank you for providing feedback for the newbies

me: Jerry, what a great attitude!

Jerry:  It's not fun but it's not fatal! I would rather have TS than stage 4 colon cancer or something.

Me:   Jerry, if you are not Christian this may offend you. It's not suppose to, just think of it as my "opinion" about my beliefs. I still want to say it please.

It's all about perspective isn't it? I keep trying to remind myself of that. I broke down recently and was literally bawling out a prayer about our son. He's already been through so much, how much more does he have to endure? Why him? And the words came to my mind "Mary prayed the same prayer for her Son. "B" is my son too, I am aware of him, I know his struggles, and I am here for him as much as I am here for you." I bawled a lot that night.

He was born at 30 weeks 5 days, died at 23 hours old and was brought back to us, he 's had bleeding issues (takes after me), asthma, allergies (just finished three years of weekly allergy shots, poor kid), he didn't speak until he was 3 (has been in speech since age 2 1/2 and is doing great now), and now his Tourette's. I was just so overwhelmed that night with all he has already overcome and what he will have to deal with the rest of his life. He is our third of four children. He is AMAZING! I just wish he didn't have to deal with so much. His young life has already been so hard!

But as I prayed I was given insight that truly helped me. I was reminded of all the blessings he does have. I was reminded how he could be so much worse and have far more problems than he does. I try to count my blessings every day and to teach him to do the same. Thank you for being an example of that Jerry, God bless you.

Jerry:  I am not Christian and also not offended. I am sorry about your son's issues. I truly believe that Tourettes brings great gifts with it. At this point if I had the opportunity to be free of tics, I would refuse that opportunity for fear I would also lose the good things in my life. Things that I think are inextricably connected to my TS. Your note was sweet and I thank you for it.

Me: That really intrigues me. Could you please explain more about what you mean?

Jerry: I am smart, funny and creative (humble, too !). There is evidence to back this up: I have 3 post graduate degrees, I have published an ABC book (If You Were an Aadrvark: An ABC Book Starring Mammals, available at www.xlibris.com, search for Gidner in the online bookstore), and tend to make people crack up. I am always coming up with ideas. I have a restless energy that lets me get a lot of things done. I have no evidence for this other than my gut instinct, but I feel like my creativity and energy is linked to my TS. I would take a lot more tics than I have now to keep that other part of me. Because thats the part that fulfills me. Also - in a less direct way - I have a very thick skin. No one can say anything to hurt me, because I heard it all, and worse, on the elementary school playground. When college roommates mimic your tics to your face, what your boss thinks of you is somewhat less damaging. I am not saying it has all been fun. I have been horribly mocked and discriminated against. But I think you can be a prisoner of Tourettes or it can be a prisoner of you, and I made my choice a long time ago. All that being said, I don't mean to minimize it. Lots of kids have it worse than I ever did, or have other co-morbid conditions that make life hard, like OCD, anxiety, ADHD, etc. Both my daughters have OCD and one has anxiety. Those are both more debilitating conditions than my TS ever was. Because it actually affects how THEY function. Again, I don't mean to minimize it, but for some people with TS, the biggest problem is not that they are ticking, because that by itself doesn't affect brain function, but the reactions of the people who see them and are offended by it. I know. I have been subject to those reactions my whole life. But my opinion is that I tic, I can't help it, and anyone who doesn't like that can suck it.

Me: Well said. Thank you so much for sharing your story and insight with us.

I will never meet Jerry. But he has left a lasting footprint on my path to understanding Tourette's and how to help my son. I am grateful to strong individuals who are an example of resilience, like Jerry is. Thank you Jerry. 


Other responses to my initial question of  can people outgrow their tics? 
  
Samantha: The neurologist told us (just on Friday) that a large percentage of kids outgrow their tics during their teens - that the tics intensify through their pre-teen years and then fade away, but that the other difficulties many with TS face (like the OCD and ADHD) do not tend to fade away. We are very new to this diagnosis - our son is 5 and the neuros have been telling us for 3 years that his tics were seizures and that he had a whole slew of disorders to go with it, as well as cognitive delays, etc - but I do distinctly remember him saying that the tics are often outgrown.

Jordan:  I've outgrown mine for the most part other than a few head movements

Josie: My son is almost 16, was diagnosed with ts and adhd at age 7. His tics have become very mild and now only tend to flare when he becomes emotional. He isn't even on any meds for it anymore.

So, no matter what happens to B, he will be fine. There is a possibility that he will outgrow his tics, that is my ultimate hope. But if that is not God's plan for him I will be okay with that too. I will support him and encourage him to pursue his dreams. He is so smart, so athletic, so amazing, he truly can do or become anything he wants. With or without tics. 

"I. Am. AWESOME!"

B has always had an amazing attitude. He would say things like "I. Am. AWESOME!" And "today is the BEST DAY EVER!" It was wonderful and it was contagious. He hasn't said those things in a while and I really miss it.

He wasn't born "normal" or "average". But he was born "awesome"! He has been given so many gifts to guide him through his trials. Each one of our children have been given amazing gifts to guide them throughout this life. I hope each of them can find it within themselves to say in the mirror each morning, "I'm not here to be average, I'm here to be awesome!"

I don't think anyone is "normal", what does it mean to be "normal" anyway? There is so much diversity in the world today that I do not think anyone can truly tell what categorizes a person as "normal". There are plenty of "average" people in the world though. What categorizes someone as "average"? I believe it is someone who just lays own and covers themselves in the label the world has put on them, someone who essentially gives up trying to be anything but what others say they can be. What they are allowed to be. An average person makes decisions based on what fits in "the box". Who draws that box? The world, other people, satan. We have the eraser. God gave us the eraser. We can erase the box, and let our minds and imaginations take us places. Let our hopes and our dreams lift us up. Let our uniqueness, our personalities, our trials and our blessings motivate us. We can erase the box of average and be awesome!

That is my hope and dream for each of our children.

Familiar Names and Faces with Tourette's Syndrome

There are many people who have TS and have still gone on to be very successful in life. Several of these individuals are even famous. Here is a list of some of the famous names who can relate to our Mr. B. ;-)

Howard Hughes (1905 – 1976) Howard Hughes’ symptoms were well-known. That didn’t stop him, however, from being brilliantly successful in both Hollywood as a film director and producer and in aviation, where he owned a number of airlines, and at one point held a number of air speed records as an aviator.

Howie Mandel (1955 – ) Voted one of the 100 best stand-up comedians of all time, Howie Mandel first became known for his role in the tv series, “St. Elsewhere,” and later for “Bobby’s World.”  Dan Ackroyd (1952 – ) It’s hard to know what accomplishment to mention first with Dan Ackroyd — his performance in The Blues Brothers, his role in Ghost Busters, his comedy in Saturday Night Live, or House of Blues, where people can hear great blues music. This talented actor, musician, screenwriter, and comedian grew up struggling with symptoms of Tourette’s and Asperger’s Syndrome. You can hear Dan talking about how these conditions affected him in an interview he gave on NPR. David Beckham (1975 – ) This talented soccer player (“footballer”) from the UK has publicly admitted that he struggles with TS and OCD:  “”I’ve got this obsessive compulsive disorder where I have to have everything in a straight line or everything has to be in pairs. I’ll put my Pepsi cans in the fridge and if there’s one too many then I’ll put it in another cupboard somewhere. I’ll go into a hotel room and before I can relax, I have to move all the leaflets and all the books and put them in a drawer. Everything has to be perfect.” (Source – The Independent Online, April 2, 2006). James Durbin (1990 – ) James Durbin has been one of the breakout singers in the 2011 American Idol season. He talked openly about his Tourette’s Syndrome and Asperger’s Disorder during his try-out and how his tics disappear when he is totally focused on his singing. Marc Summers (1951 – ) A popular tv host and entertainer, he had struggled since childhood from obsessions and compulsions, but didn’t know what he had until Dr. Eric Hollander came on his show as a guest. As Marc listened to him talk about OCD, he realized what he had. His book, Everything in its place, tells his amazing story. Jim Eisenreich (1959 – ) Jim is a retired major league baseball player who played with the 1993 National League Pennant winning Philadelphia Phillies and the 1997 World Series champions, the Florida Marlins. Although Jim had had Tourette’s since childhood, he wasn’t diagnosed until he was a baseball player. Jim donates much of his time to educating the public about Tourette’s and serves as a role model for many children. Tim Howard (1979 – ) Tim is an American soccer player who plays as a goalkeeper for English club Everton and the United States national team. This talented athlete also played in the 2000 Olympics. Tim’s tics and compulsions were evident in elementary school, and school was rough for him because his classmates teased him and his teachers viewed him as a discipline problem. Dr. Samuel Johnson (1709 – 1784) Dr. Johnson was a famous British poet, essayist, and lexicographer. He wrote the Dictionary of the English Language and The Lives of the Poets. Dr. Johnson’s unusual movements (most likely tics) and compulsive behaviors were observed by many of his peers at the time and described in such rich detail that there is little doubt that he had Tourette’s Syndrome with obsessive-compulsive features or even full-blown OCD. Dr. Johnson was also reported to suffer from depression throughout his life. It is also believed that Mozart had Tourette's Syndrom. You can read this article to learn more. Here is a much longer and descriptive article on Mozart's TS if you's like more detail.  And here is a link to a video showing the NBA star. Mahmoud Abdul-Rauf, also known as "Tic". It shows his tics, but also shows his mad skills. This man did not let Tourette's hold him down! Home The Blog About Stephen In the News About The Film Famous Tourettes Stephen’s Music Tourette Cam the YOU cam Contact   Famous Tourettes Click and Purchase Music! 50% of proceeds are donated to National Tourettes Syndrome Research! Throughout history there have been some famous people who have lived and succeeded with Tourette’s Syndrome. Below are some you might know. Wolfgang Amadeus Mozart (1756-1791) In late 1992, the British Medical Journal published an article by endocrinologist Benjamin Simkin, M.D. speculating that Mozart had Tourette’s Syndrome. Apparently he wrote several letters to his cousin Maria that contained many obscene words, especially words having to do with bodily functions. It has also been documented that he was hyperactive, suffered from mood swings, had tics, and loved made-up words. Despite these behaviors, we will probably never know for certain whether Mozart had TS. - See more at: http://www.synapticadventure.com/famous-touretters/#sthash.WgTdP61Z.dpuf Wolfgang Amadeus Mozart - (1756-1791) In late 1992, the British Medical Journal published an article by endocrinologist Benjamin Simkin, M.D. speculating that Mozart had Tourette Syndrome. Apparently he wrote several letters to his cousin Maria that contained many obscene words, especially words having to do with bodily functions. It has also been documented that he was hyperactive, suffered from mood swings, had tics, and loved made-up words. Despite these behaviors, we will probably never know for certain whether Mozart had TS. - See more at: http://www.disabled-world.com/artman/publish/tourettes-famous.shtml#sthash.4E37f3DO.dpuf Wolfgang Amadeus Mozart - (1756-1791) In late 1992, the British Medical Journal published an article by endocrinologist Benjamin Simkin, M.D. speculating that Mozart had Tourette Syndrome. Apparently he wrote several letters to his cousin Maria that contained many obscene words, especially words having to do with bodily functions. It has also been documented that he was hyperactive, suffered from mood swings, had tics, and loved made-up words. Despite these behaviors, we will probably never know for certain whether Mozart had TS. - See more at: http://www.disabled-world.com/artman/publish/tourettes-famous.shtml#sthash.4E37f3DO.dpuf CLICK HERE FOR VIDEO Wolfgang Amadeus Mozart (1756-1791) In late 1992, the British Medical Journal published an article by endocrinologist Benjamin Simkin, M.D. speculating that Mozart had Tourette’s Syndrome. Apparently he wrote several letters to his cousin Maria that contained many obscene words, especially words having to do with bodily functions. It has also been documented that he was hyperactive, suffered from mood swings, had tics, and loved made-up words. Despite these behaviors, we will probably never know for certain whether Mozart had TS. - See more at: http://www.synapticadventure.com/famous-touretters/#sthash.WgTdP61Z.dpuf Wolfgang Amadeus Mozart - (1756-1791) In late 1992, the British Medical Journal published an article by endocrinologist Benjamin Simkin, M.D. speculating that Mozart had Tourette Syndrome. Apparently he wrote several letters to his cousin Maria that contained many obscene words, especially words having to do with bodily functions. It has also been documented that he was hyperactive, suffered from mood swings, had tics, and loved made-up words. Despite these behaviors, we will probably never know for certain whether Mozart had TS. - See more at: http://www.disabled-world.com/artman/publish/tourettes-famous.shtml#sthash.4E37f3DO.dpuf  Sources: http://www.schoolbehavior.com/disorders/tourettes-syndrome/famous-people-with-tourettes-syndrome-or-obsessive-compulsive-disorder/ http://www.disabled-world.com/artman/publish/tourettes-famous.shtml

Opening up about Tourrette's - part 2

I went to school this morning not really sure of what I would say to all these third graders. They are B's friends. Most of them have been to our house. I have known most of them for almost 4 years and wanted to believe that they would understand. I was hopeful that they would be kind and not look at B differently, but have more patience with him and his ticks. A part of me, though, was scared. I was scared that they would look at B differently. Too differently to know how to act around him anymore. I was worried that some kids would make fun of him. They are kids, and you never know how kids will respond to things.

There was a note on B's classroom door which read "we will be starting our day in Mr.s Carnahan's classroom today. please meet in her classroom." All the kids were puzzled and speculating as to why. Some of them thought they were in trouble and were quite worried. It was kind of comical actually. They all went into the classroom and Mrs. Beeler's class (B's class) sat around a table which was off to the side or stood behind it. Mrs. Carnahan told her kids to put their coats and backbpacks away and quickly sit down. She said, "Mrs. Tolman has come today to talk to us about Tourrette's Syndrom." They all sit down and stare at me with their sweet faces. I know these kids. These are good kids. I felt comfort and peace, so I began...
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Who here has ever had the hiccups? (everyone raises their hands)
Who here has ever had the hiccups for so long that your throat or your tummy starts to hurt and no matter how many times you hold your breath they just will not go away? (most of them raised their hands)
Who has ever had an ich that was so awful you just had to itch it, or an itch that you couldn't reach and it drove you nuts? (everyone raised their hands)
Who here has ever had a sneeze that you felt coming and when it came you had to let it out, you could not hold it back? (everyone raised their hands)
Sometimes you can make the sneeze quieter (I demonstrate), but you still have to sneeze, right? (everyone nods their heads)
Sometimes that sneeze just comes out of no where and it's loud and forceful, right? (everyone nods, some giggle)
All of those things are muscle movements that you cannot control. You may be able to suppress them for a little while, or make them a little quieter, but you cannot control them. Our brains fire signals to our muscles and tells them to move in a certain way. Sometimes we can control those signals, like when I move my hand like this (I demonstrate), and sometimes we cannot control those signals, like when we sneeze, hiccup, or blink.

People with Tourrette's have what are called "tics". A tic is a muscle movement that they cannot control but it would be something you or I, without Tourrette's, could control.Their brains are firing too many signals telling their muscles to move in ways that the rest of us do not understand.
A very common tic is blinking. They blink a lot more than the rest of us. (several heads turn and look at B who is sitting at the table. I look to Ben too and he is looking up at me with his big dark blue eyes...blinking. I feel a lump form in my throat, but I continue on.) Sometimes they make throat noises that sound like little burps, or froggy noises, or clearing their throat, or a little cough (I demonstrate). Sometimes they have to stretch their neck muscles or arm muscles or any muscle, kind of like a yawn. We have all yawned, right? (everyone nodded) You know how a big yawn stretches your whole body, effecting almost every muscle? (everyone nodded) It is like that, they just need to stretch those muscles or move them in a certain way.

Some tics are like hiccups, they come out of no where and there is no stopping them. They just come when they come and they are done when they're done. Some tics are like a sneeze, sometimes you can feel it coming and can suppress it and make it quieter, sometimes it comes out of no where and you cannot suppress it. Some tics are like an itch, you can try to ignore it, but the longer you try to ignore it the more annoying it gets until you just have to itch it. Some tics are like a yawn, it comes from no where and it is a full body sensation. And some tics are like blinking, you don't even realize you are doing it. That is what it is like for B. B has Tourrette's.

(Now I start to cry. the principal hands me a tissue.)

However. Even though B has tourrette's and deals with ticks every day, all day. He is still such a remarkable kid. He is good at sports, at playing the piano, he is a good student, a wonderful son and sweet brother. He is a good kid.

And I think he's a good friend too.(everyone nods, they are smiling now) Who thinks B is a good friend? (everyone smiles and hands shoot up high instantly. They all look at B who is also holding his hand up. I laugh/cry. The teachers and principle are also holding their hands up. It was such a beautiful site!)

Thank you all for being such good kids and for being so kind to B. You are all good friends.
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I then look to Mrs. Beeler and she tells her class to say Thank you, all the kids from both classes say thank you. Then she excuses her students to go back to their classroom. I walk out first and hold the door. The assistant is the first to walk out and she gives me a big hug and says "Thank you. NOW I understand." Then several kids give me hugs and when B walks out he gives me a super tight hug. Oh! He makes my heart melt! Then Mrs. Beeler comes out, hugs me and then proceeds to tell me that she knows what it is like to have a child who is different and how hard it is to explain to people like that. She told me about her daughter through tears. It was a beautiful moment.

They all walk to their class and I start walking to my car. The principal comes up behind me and says "Thank you so much" and gives me a big bear hug. I go to my car, cry for a few minutes, letting it all out. And then go home.

Now we wait and see how the kids respond and act around B. Now we let go and let God. I know most will be kind and caring. I hope all will. I hope they do not act any differently around him. I hope they see how amazing he is and continue to love him.

Opening up about Tourrette's - part 1

It has been over a year since I posted on my blog. I really need to blog more and FB less. We hit a big milestone with B. It was finally time to inform his peers what Tourette's is....

Last Friday B came home very upset. He got in trouble in class and had to move his clip down (behavior chart in the classroom) for the first time this year. He was upset because of why and when he told me, I held him on my lap and cried with him.
His tourrette's ticks are getting worse. He does them more often and is having a harder time supressing them. He cannot even make through a prayer with out doing several of his ticks which cause pauses in his speech. It just breaks my heart. We have an appointment to talk to his doctor about it again.
What happened on Friday was; he was standing in line waiting to go back in to the classroom at the end of recess and his throat tick was happening. It sounds like a little frog sound or burp (the burp when your moth is closed) and the girl in front of him raised her hand and told the assistant teacher that B was burping. The teacher told B to stop. He couldn't stop but didn't know what to say. So the girl tattled on him again. The teacher scolded him in front of everyone and then made him move his clip down. When he feels upset (or excited, or tired, or stressed) his ticks escalate. Thankfully, right after recess he had to go to speech. It was just the speech therapist and him, she knows about his tourette's and was able to calm him. By the time he came back from speech, the tick had quieted.

I went in on Monday morning and talked to the teachers. I found out that B's teacher forgot to tell the new assistant (she has only been there for a couple months) that B has tourrette's. They both felt TERRIBLE when I told them what happened. The assistant asked me, "Then what do I do? If one child gets tattled on for "burping" but doesn't get reprimanded, then before I know it they all think they can burp and are doing it on purpose and I have no control." I told her I understood her valid point. I suggested that I come in and talk to the class about tourrette's.

So this morning, the soonest everyone could do it, both 3rd grade classrooms and the principal all met together first thing in one of the classrooms. I took ten minutes and talked to the kids about tourrette's. I think it went very well except the part where I started to cry in front of everyone and the principal had to hand me a tissue. The kids were all so sweet and understanding!

This is just one more chapter in B's young but eventful life. My heart aches for him when I think of all he has been through and all he will continue to endure for the rest of his life. My heart also rejoices when I see what an amazing, talented, and capable sweet boy he is. He is a fighter, he doesn't let his limitations define him or limit him! He is amazing at sports, extremely smart student, talented at piano, liked by everyone, a good friend and a sweet boy. He is fearless and will try things with a "can do" attitude and will keep trying until he figures it out. He is not easily discouraged, but he also has a soft heart and is easily hurt sometimes. He is one of the most compassionate and caring children I have ever met. He will cry if someone else is crying. He will stop playing football at recess just to help a younger student tie their shoes. He prays for his family members and his friends. He is truly remarkable. All of our children are. B just has to overcome the most to be remarkable. I do not think I would have the strength if I were in his shoes. He teaches me so much. I love him more than words could ever say. I love all of our children more than words ever could say. (yes, I am crying right now, my heart is so full!)