Taking Mestinon with food helps. What also can help is starting Mestinon at a lower dose, like 15 mg. Because I'm sensitive to meds, my neuro started me out slow. One dose for the first two days of a LOW dose, then two doses at that same dose amount. The thing about Mestinon is that more isn't necessarily better, meaning more in the dose amount. It's up to your son's doctors but sometimes increasing frequency, like 1 - 4 times a day slowly, may be better at first than increasing the dose amount. BUT don't do anything without approval from the prescribing doctor.
Here's a silly question, how's your son's diet? Does he eat any junk food? Pop? Caffeine? Before an EMG, they recommend that patients be off of Mestinon for 12 hours beforehand. Caffeine 24 hours before. Both can interfere with the test results.
Why was your son sick to his stomach? Sometimes, it can be because kids have to poop.
Seriously, it's one of the first questions they're asked in school if they have a sick stomach. Was it awhile since he ate? Did he eat anything in particular that would've caused that? A sick stomach isn't normal either. Oh, and did you know that a person needs acetylcholine to move stools through the GI tract?
The fact that he got stronger and not weaker, probably means that it is indeed a "not enough acetylcholine" situation. Some of the CMS's cause too much acetylcholine. That's unfortunate that he got so weak but at least, like you said, he got care and things were documented. Did he get short of breath at all?
There are two different kinds of muscle biopsies. The first one is a regular one (excisional biopsy), where they slice into the muscle, taking out pieces of it. It's painful because they can only numb the skin and not the muscle. The second one, the one they do for CMS, is usually a "procedure" where someone is under anesthesia. They often take muscle from the intercostal muscles (rib cage area) or from the arm. It's not a simple thing. If they are doing a punch biopsy, I'm not sure what that would reveal, frankly. A "shave" biopsy (a third kind) really wouldn't reveal anything having to do with the muscle. You need to ask them specifically what they are going to do. Some anesthetics can make MG worse.
As far as places to stay:
http://www.ucdmc.ucdavis.edu/aboutus/stay.html
Maps of the area:
http://www.ucdmc.ucdavis.edu/welcome/maps_directions/
As far as dealing with the doctors, how about being yourself? Be courteous, respond to questions, ask questions and just go with the flow. If you are overly "anxious," neurologists tend to put some kind of psycho-babble label on you. Let your son talk too. I think being calm, reasonable and respectful goes a long way to having a good interaction.
This is their leading expert:
http://www.ucdmc.ucdavis.edu/welcome...lli_grant.html
http://www.ucdmc.ucdavis.edu/search/...searchlist=yes
I hope the appointment goes well. If your son gets worse in the meantime, please don't hesitate to take him in. Calling 911 if he can't move like that or can't breathe well or swallow is the best thing to do! You can't always tell how quickly MG/CMS will get or how bad.
Traveling is very hard work for someone with MG or CMS. Make sure he's in a wheelchair or a transport vehicle in the airport. Keep him as still as possible in the airplane. Ask the attendants if they have anything he can sip on right away or bring water on the plane, in case he might choke. One of the worse choking episodes I ever had was on a plane. Keep him cool (not cold, not hot). He also needs as much rest/sleep as possible. Yeah, he may not like being "babied" but it's very risky to travel if he's weak.
Keep asking questions. I believe you guys will get very good care now.
Annie
And this may be too much info, but here you go anyway.
http://neuromuscular.wustl.edu/synmg.html
http://neuromuscular.wustl.edu/lab/mbiopsy.htm
http://www.ncbi.nlm.nih.gov/pubmed/15119478