Hello! I am so glad I found this forum. My daughter is one one the twins and she was born with very low muscle tone. She is severely underweight, and was diagnosed with failure to thrive without any other causes. We live in a a large city in Midwest that has a great childrens hospital, but it took 11 years of testing to finally diagnose my daughter. Very frustrating.
We now have to start Mestinon 60 mg a day. I am very scared to start this, I do not know how it will affect my daughter. She is only 46 lbs. Although all these years my daughter had so many struggles, she does great in school and has many friends. She is also pretty healthy, and seems to have a good immune system. I don't know how this med will affect her mental state. If anyone has a child who has been diagnosed with this and is being treated with Mestinon, please respond to this post and let me know how your child has responded to this medication.

Did they tell you to split the dose of the 60 mg over the day? If I weighed 46 pounds, I don't think I'd want to take it all at once.

I would suggest starting out with 1/4 of the tablet at at time and see what it does. I agree that the 60 mg sounds a bit much for the little kid.

Then again, you have to talk to your doctor and make your own decisions. All we can do on the internet is give our opinions.

Hi, Alkap! Welcome to the forum.

I'm sorry your daughter had to go so long before a diagnosis. Can I clarify which disease she has?

Does she have myasthenia gravis, the autoimmune disease, or does she have a congenital myasthenic syndrome, which is a genetic disease? The reason I'm asking is that they both have different ways to diagnose and treat them!

How was she diagnosed (with what tests, etc)?

Mestinon will not affect her brain in an adverse way—at least that I know of. A lack of acetylcholine, however, will affect her brain!

I've attached the pdf for Mestinon for you. At least be aware of any adverse effects or overdose symptoms. There might be days when she's more active when she might need more of it, but speak to the neurologist about making any dose amount or timing changes.

Mestinon kicks in after about 30 minutes. Two hours after that point it wears off. So there are two good hours of use of it! Those of us who have had MG and used Mestinon for a while can tell when the drug is wearing off. And taking it with food is a good idea to help with any possible GI upset.

Have you spoken to a pediatric neurologist? A MG expert or a MDA Director?

I agree with Celeste that starting with a lower dose might be a good idea. Did they even offer you the option of having the Mestinon syrup? That way, it can be titrated at smaller intervals and is easier to both swallow and digest.

The best way to manage MG, besides drugs, is to alternate activities with rest. Even having permission to take a nap during the school day would be a good thing. MG, or a CMS, can't be pushed or it will push back. The more she does, the weaker she will become. And if that weakness progresses over time by doing too much, she could go into a myasthenic crisis, where swallowing, breathing, or moving, or all of the above, becomes so bad that she needs to dial 911 and be admitted for further treatment and supportive breathing apparatus.

Don't be scared by that, just be aware of the possibilities AND what she can do to avoid that happening!

There are some drugs that can make MG worse, such as Neurontin or some antibiotics such as Quinolones. Check out these sites for more information.

www.myasthenia.org
www.mdausa.org

Or the more detailed site: http://neuromuscular.wustl.edu/synmg.html

What are her current symptoms? Or symptoms when she is worse?

There is a lot to learn about MG and how to handle it (i.e., foods to eat when swallowing is poor). Kids are really smart, and she should know as much as she can about this disease, too (age appropriate).

Kids have a tendency to overdo things, so if she knows what any consequences of that might be, she could manage her activities better. Also, what type of activities she does (i.e., sports) might need to be changed or adapted.

You should also know that extremes of heat and cold can make MG much worse, especially heat. There's a technical reason for that if you want to know what it is. She should stay as "cool" as she can. If she does become overheated, she should get cooled down right away. And maybe take a nap! MG can put us to sleep if we do too much!

With those early morning hours of most schools, she needs to make sure she gets enough sleep as well. Sleep is like a prescription for MG, because without enough, we can become worse.

What else can we help you with?

It's overwhelming to think about all of this, so give yourself some time! I'm sure your daughter will be just fine. I've had MG my entire life, but didn't know about it until I was 41. I simply knew that I couldn't do physical stuff and intuitively managed it with rest.

Annie

Attached Files

Mestinon_Suspension_60mg-Tablet_60-180mg_PI_May01.pdf (38.7 KB, 703 views)

My daughter was diagnosed by a pediatric neurologist, her MG is a congenital type that was diagnosed via genetic testing and an EMG. We have not started the meds yet, I am contacting the neurologist to clarify what dosage she will need. Her rx was for 2 ml 5 x a day, but the DR said that we need to start it slow. My daughter is very underweight and the swallowing maybe an issue, also though my daughter never complains. will be doing the swallow test soon.
Still processing all of this, at least we have an answer for her weakness and fatigue.

Did they let you know which genetic mutation it was? If not, you have the right to know. They are not all the same and might require a slightly different approach.

Yes, it is overwhelming, but she can live a good life! Just give yourself some time to adjust and don't forget to take care of yourself, too!

1 ml. = 12 mg. That is probably a good starting dose, as per my diagnosing neurologist who is a MG expert and MDA Director. But run that by her doctor first.

He started with one dose the first day, two the next, etc. We increased the dose and spacing later.

Do you know what the best swallow test is? Drinking a sip of water from a glass, one sip at a time. You can tell how swallow is very quickly.

Keep asking questions and doing research. I am 56, and I've had this disease nearly that long. I got two college degrees and worked. Yes, I am now disabled, but I also have other mitigating factors and I have autoimmune MG, not CMS.

Annie