I congratulate you on your decision. I didn't find out what was "wrong" with me until I was 54 years old. Everyone in my family said I was lazy, unmotivated and fat. The doctors all said I was making it up, seeking attention, clumsy, etc. So I had nothing to do but make the best of it. Your daughter has the good fortune to have supportive parents and a tangible diagnosis to work around and deal with.

I also could never make fast or sudden starts, so I chose sports that didn't require that. I ice skated, roller skated (ALL kids fall when they skate!), bicycled, rode horseback (sometimes a bit clumsily), and was a very good batter in softball. (The running part wasn't easy...)

But if you teach your daughter about her MC, and let her grow up understanding it, she will incorporate it into her plans and activities, and will learn to compensate. I know a number of people with juvenile diabetes, whose parents began teaching them about diet, medication, diabetic crises, etc, when they were only 4 or 5 years old, so that it just became natural for them to deal with it.

Sugar, caffeine, food additives/preservatives and other unnatural substance should be avoided. It does make a big difference. Lots of luck - Lois

Type of Myotonia: MC- Becker's type

Country: USA

Julie,

I was thinking along the lines of Jenna's post when I read it. Talk to your daughter, and give her the ammunition she needs to explain what she has to others. I wish I had had an explanation for what I had when I was little. Don't worry it is not good! Talk to your doctor too, explain your worries, that also helps.

Type of Myotonia: under investigation

Country: UK/Mexico

Julie,

I wish I could say that if you don't give your daughter the medicine it will have no affect on her self confidence right now, but I don't believe that. I think kids will tease her and treat her differently, and she won't gain that confidence that comes from competing with others physically and winning. Instead she will have to develop skills in other areas, compete in those areas and win in those areas to gain confidence in herself.

The upside to not using pills is that it first creates an opportunity for her to develop good eating habits, self discipline and individuality. So many people never learn what makes them different and unique, instead they go through their entire life following others around like sheep, constantly trying to keep up with what is the popular way of doing things. The problem with popularity is that it is very difficult to predict and even more difficult to control. The Dali Lama once said it best when speaking about himself, "Nobel peace prize winner one day, piece of crap the next day."

Learning what is unique about oneself is the only way that people can ever really learn to love themselves. You can't learn to love yourself if you don't first learn what is unique about who you are. Ultimate confidence and serenity can be found through this approach--it just takes longer and is usually beyond the realm of comprehension of a child.

The second upside to not using medicine to take away the effects of MC is that at her age I think you run the risk of teaching your daughter that anytime she has a problem, she just needs to look for a quick fix (i.e. a pill) that will take away her problems. Not that medicine doesn't have it's place, but children can't always decipher the grey areas of life--they tend to have all or nothing kind of thinking.

All the other challenges in life that your daughter is going to face as she grows up, such as difficulty in relationships, possible job loss, death of loved ones (it happens to us all) and the myriad of life challenges that we all must face require a certain degree of resolve and knowledge that can only be gained from going through similar situations. This is why sometimes not being the top of one's class in grade school can actually be a blessing in later life. I know too many people who were hotshots growing up, but are now miserable, because they still expect everything to be easy for them.

Type of Myotonia: Thomsen's

Country: USA

Jim,
I have stopped giving her the medicine for good..... It's not that she doesnt have self confidence but she is always afraid of falling.... her classmates dont tease her either.... they just treat her differently..... i have seen on many occasions her friends asking her if she needs help on the stairs... becuase they see that she doesnt walk normally on the stairs.... or they will try to hold her hand on the stairs... and my daughter does not let them... she is too independent and she doesnt want them thinking that she is not like them..... and when she falls, like on stairs or while running or something she comes to me and tells me..... and i always tell her "so.... everyone falls..." i dont want her to think that she is different from the other kids.....
she is very good in school... so that is a way she competes with her classmates.... but when she does not get perfect she cries.... or when she doesnt know something on a test she cries..... i think i am pushing her too hard in school.....
That is not good to teach her that meds can take away everything she has a problem with..... the last weeks that i was giving her the med.. i was giving her a lower dose..... and she would tell me... mom you should give me the medicine like before... meaning she wanted me to increase the dose again....
right there i thought that i was doing something wrong... that she is depending on the med to take away the MC and that she was not depending on herself to be stronger than it..... that is when i stopped... i want her to deal with it just as i have,..... it is not even noticeable in me......
cuz i have learned how to deal with it...... plus if i was giving her the med for a long time and she had to stop for some reason... she would go back to being locked which will depress her.....

the challenges that you are talking about .... in relationships..... job loss.... death of a loved one... we all have those challenges..... its not just people with mc.. or any other disability..... but seriously i am so scared for her to get hurt..... maybe i am too protective of her..... i just can't relax... and let things happen.....
seriously.. the comment about not being the top of one's class is a blessing is so true..... my daughter seriously is a sore loser...... if she loses at something.... or gets something wrong on her dictations or quizzes.... she gets so mad and cries....
i wish i could just let her study alone and get whatever mark she gets but i can;t.... i want her to be the top of the class and i know that is so wrong.... i think that it is teaching her to depend on me..... i know that if i dont let go soon.. i am going to ruin my daughter.... i just cant see anyone being better in school than my daughter.. i guess i dont want her to be upset..... i really dont know....
maybe it is cuz i want her to be the best in something... she cant in sports so... in school...... anyways.... thank you for your post..... it made me think about a lot of things....

Type of Myotonia: thomsens

Country: lebanon