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Re: 5 yr old Son

Alicia,

I find that parents of children with Becker's MC (recessive) have a tough time watching their children struggle with the stiffness and awkwardness and want to "fix it" for them. Those of us who are parents with MC and have children with MC tend more to teach them to work around it and not worry about not being normal. Since we know exactly what it's like, we can sympathize but we also know better how to deal with it because of our own experiences.

In my family we have three generations currently with symptoms. My daughter and granddaughter with MC are very active with the MDA and their activities like camp, fund-raisers, etc. My granddaughter is very open about what she feels and her friends are totally understanding and even admire her. Where we get into trouble is when we try to hide it and make excuses. I realize some of this has to do with personality, but in general it's good to teach our children that they are unique and that they can help educate others about living with disabilities.

Your son is very young to start on such a powerful medication. I don't recommend them until late teens at the earliest, and even then it can be taken intermittently as needed. For instance one mom on the forum says her son only takes Mexitil before a football game. If he had uncontrolled seizures or something much more serious than MC, I could see the benefits outweighing the risks. But myotonia is more of a nuisance than a serious medical condition. There are situations where the stiffness can cause accidents like falls on stairs or on a sidewalk or street, but we usually learn to be careful and back off when our muscles stiffen and let them relax before moving on. Biofeedback training can be invaluable in learning to control adrenaline response which can cause sudden stiffness.

If you haven't read through the letter to the school staff on the website, that might be helpful. (Click on the "Return to Website" link above.) Your son will never be able to serve in the military and he may never be a professional athletes (although many are semi-professional in sports like soccer, tennis and track). But he can have a wonderful life with many options for education, hobbies and a career.

Unfortunately many doctors think that physical therapy will fix the myotonia and actually if it's not done properly it can make it worse. I think it's usually best to teach children coping mechanisms and how to relax instead of pushing against the stiffness. You begin to find a rhythm and after a while it becomes second nature.

One thing that you could try with your son is the amino acid L-Taurine. There are some studies being done in Italy that show it can be quite effective in relieving myotonia. 500 mg per day should be very safe. You can mix it in juice or food since he's too young to swallow a capsule. Another supplement that might be helpful is Acetyl-L-Carnitine (also 500 mg). People with MC have a reduced level of carnitine and this can help with exercise tolerance.

I hope some of the moms on here will see your post and respond. You might want to do a search through past threads, also.

Jan


Type of Myotonia: Thomsen's

Country: USA

Re: 5 yr old Son

Alicia:

Unfortunately you probably won't find many parents of children with MC, unless it's Thomsen MC, the dominant form, because those who have children with Becker MC, the recessive form, probably don't know what, if anything, is wrong with their child.

Having been undiagnosed for most of my childhood, I got through it without medication. Despite being sub-par physically, I still managed to learn how to ride a bike, climb trees, and play a few sports. I couldn't do any of the extreme sports but I played soccer, basketball, and informally field hockey, and was in karate for a while. I also rode horses for a time.

I think the only thing the medication would have allowed me to do, that I couldn't do when I was a child, would be to more efficiently endanger my life by making it a little more possible for me to actually try those extreme sports.

The only time I considered medication was when the myotonia began to affect my throat and tongue and I couldn't swallow anything without my throat locking. But that lasted for about two weeks, and the rare occasions when it happens now, I can usually deal with it.

I would like some medication these days but most of the medication is aimed at treating the myotonia, and not the lesser symptoms, such as muscle weakness/stamina issues, which have actually become a bigger problem for me. In fact the medication for the myotonia can actually cause weakness, among other things.

So I'm not sure the benefit to cost would really be worth it. It depends on how severe his myotonia is and how much it impedes him, and impacts his quality of life perception. If he just lags behind other kids a little, and can still participate in most physical activities when he warms up, and doesn't seem particularly distressed by his limitations, I'd probably prefer not to give him the medication, if he were my kid. If he's just miserable all the time or is so severely affected that he can't really get warmed up, has pain, or tends to choke on his food, then I might consider it.

You should probably speak to a pediatric cardiologist before trying him on it though.







Type of Myotonia: Becker

Country: USA

HI JENNA!

Hi. my names Paige and i'd just like to say...... WOW! i am 11 and ive just posted a message to Alicia. i was just looking around the site and saw you BRILL post. it had so much info!

when i was little, my mum always knew something was wrong.it first started with my legs, then when i was about 5 it started on my arms. now everything goes into a spasm. my face, hands, wrist, feet, neck. i don't know if Thompson's is the same, but like you, even though i struggled, i managed to learn to ride the bike, and now i enjoy going horse riding, and playing netball and football at my school.

I don't take any medication, only calpol when i get pain, and i manage alright.
well done again for the FAB post, hoping i'l get talked to soon, Paige x

Type of Myotonia: becker

Country: UK

Re: HI JENNA!

Hi Paige:

I'm glad you found my post helpful. I was wondering, do you have any symptoms aside from your muscles cramping up/being slow to relax? When I was very young, before my muscles started locking up, I had a lot of odd sensations in my muscles like shakiness, weakness, or it felt like my legs were going to give out. I've asked others with Becker MC if they had any symptoms before the delayed relaxation started, but most of them are too old to remember:-) Those symptoms went away for a while when the delayed relaxation/cramping started, but started to return in my late teens.

Here is something I wish I had known when I was younger, that you might find useful. while it might make your myotonia worse afterwards or the next day, it usually helps to do moderate exercise on a regular basis, like walk for 30-40 minutes about 5 days a week with one of your parents.

Type of Myotonia: Becker

Country: USA

Re: HI JENNA!- the reply

hi again. yes, i do have moments where i start to shake, mostly when i wake up. sometimes i feel like my muscles will collapse under me, but since i was young, ive been lifting weights, so im fairly strong.
I used to play netball for my school, and was captin, but it made the MC seem worse and i was needing to stop of school because if the cramping and pain. i still do play a little, as well as football and my riding, (i love that!!!).

here's a question. can you remember anything about not being able to stop once your doing something? I mean like if im playing football, i don't feel any pain, so i carry on going. its only when i stop and go in that i feel so bad that i won't be able to move. just wondering if anyone else had that.

thanks for replying,
paige x void(0);

Type of Myotonia: becker

Country: UK

Re: HI JENNA!- the reply

Paige:

In people with myotonia congenita, it's common for the myotonia...the delayed relaxation/stiffness part of the disorder, to temporarily worsen after resting after exercise.

For example, say you start playing football. At the beginning you probably have a hard time moving, but the more you move the easier it gets until you move normally right? This is called "the warm up effect". But if you stop moving, maybe for a few seconds, or maybe for a few minutes, or maybe for a few hours, depending, and then you try to move again, you find the myotonia is just as bad, or worse than it was before you started the game of football.

When I used to work out at the gym, I would start with the treadmill and warm up. But afterwards, I would sit outside and wait for my mother to pick me up, which usually took about 10-30 minutes, and when she arrived and I stood up to get into the van, my myotonia would be very bad, worse than it was when I walked into the gym.

A few more examples:
A few years ago, I had helped move a heavy shelf, and I did not have very bad myotonia that day before, and I was fine the rest of the day after I helped move the shelf, but when I woke up the next day, I had very bad myotonia and weakness in my hands and arms.

We had an Earthquake here that took me by surprise and kind of scared me and caused me to stand up and move to the doorway. My myotonia was not very bad at the time, but after the Earthquake, I sat back down, and when I stood up to answer the phone a minute or so later, my legs locked up.

So yes, I think I know what you are talking about, and most people with myotonia congenita experience the same thing.

Type of Myotonia: Becker

Country: USA

Re: HI JENNA!- the reply

Hi, where do you live? cause where I am we don't have earthquakes, how scary???!!! I'd hate to be in one, what with all the pushing and shouting, did you know that loud noises effect MC? I only just found out, and it effects me. at school i'm actually scared of the bell! what about you?
from Paige x

Type of Myotonia: becker

Country: UK

Re: HI JENNA!- the reply

Paige:

I live in California. We have a few thousand Earthquakes a year here, but most of them are too small to feel or are in isolated areas like the middle of the desert. But we've had a few over the past year in the middle of the city. They were small but started suddenly and still gave the building a good jolt. Our buildings are design to withstand most Earthquakes. We had a very large Earthquake here in 1994 called the Northridge Earthquake which caused a few buildings and structures to collapse but most sustained minimal or no damage, even though it was a very violent Earthquake. The house I lived in at the time, which was a wood frame and stucco house, like most here in California, had no damage, which was very surprising considering how hard it shook. But still it was very scary! If you ever come to California and go to Universal Studios, they have a ride called Earthquake which is a very good simulation of how a big Earthquake feels.

Pretty much anything that scares you enough to cause your body to release adrenaline can make the myotonia worse. Your brain sends signals to other parts of your body through nerves, including the command to contract your muscles. So these nerves are hooked up to your muscles like wires, only there is actually a little gap between the nerve and the muscles. To turn the muscle "on" and make it contract, that gap has to be bridged. This is actually no different than turning on a light. When you flip the switch on, you are bridging a gap between the wires in the circuit. To bridge the gap between the nerve and your muscle, a substance called a neurotransmitter is secreted to fill the gap and allow the signal to travel from the nerves, into your muscle, and make it contract. This neurotransmitter is called acetylcholine (ah-see-til-coh-leen). Adrenaline causes your body to release a lot of acetycholine. So the muscles contract a lot easier, and faster, and stronger. This is supposed to help people get away from, or defend themselves against danger, but since people with Myotonia Congenita have a problem relaxing their muscles, it just makes them lock up more because it's making the muscle much more sensitive to the signal telling it to contract.

I hope that makes sense!

Type of Myotonia: Becker

Country: USA

hi!

hi. my names Paige and i am 11 yrs old. like your son, i was passed around like a parcel until i was finally diagnosed with Becker MC. i just wanted to let you know that you don't need to be pressured into having your son take any drugs. (that is what it is, isn't it?!) anyway, i don't take anything apart form calpol and manage perfectly fine. if you don't know anything about it because i know because its such a rare disease alot of doctors don't really know a great deal, here are a few pointers.
1. try and keep him warm, especially in winter.
2. make sure all his teachers know whats wrong, so he doesn't feel embarrassed if he goes stiff.
3. people say that potassium makes MC worse, but in my experience it doesn't, so he can eat bananas!
4. don't be alarmed if his face goes stiff or his tongue. all our muscles go stiff so this includes EVERYTHING!
OK, think im done. there are alot more things, but these are what i think, the main. thanks for listening.
see ya, luv Paige void(0);

Type of Myotonia: becker

Country: UK

Re: 5 yr old Son

I would say a big fat NO to that kind of drug at that age.

It's a disease manageable without medications of that kind of strength. It's neither progressive nor life-threatening. I would look into physical management of symptoms and mental management--a LOT can be done through the right kind of warm up, even within a single movement, and in training oneself to use the minimum effort to achieve the goal at hand--that prevents a LOT of freeze-ups.

Type of Myotonia: Thomsen's

Country: USA