I'm very glad to hear that your son is doing well.
I can only wish this was available when i was in school.
I may have to try it to see if in fact it works.
Mexiletine, right?
Oh tbacks, I forgot to tell you that one of Walt's best friends is a "band geek" Have you ever been to a football game where there was no band? It is the most boring thing in the world. I watch the game and listen to the band. The two together make for a great night. The band totally sets the mood. Thanks for that!!! Talisa
as I read on and on in this forum I can only tell you that I have cried many times. To know there are others that have spent thier lives like you is pretty over whelming. The thoughts and answers I have found on this forum have been pretty over whelming. I must say that in my life time I have tried every medication out there. One of the first things I ever found out was that generic do not work the same as brand. That was drugs like tegretol, dilantin, For the last several years I have taken neurontin in very high doses. It works for a few hours and then quits,,I handle a few hours until the next dose. I was up to 3200 mg twice a day. I decided it was time to start over with the dose. So I quit taking it for 6 months and just recently started again. Now I can take 800 mg and get relief for about 3 hours.
I am excited to here about the Mexiletine and have made an appointment with my local mD for tomorrow.
My son Julian who is 14 1/2 yrs just started taking Tegritol (he now takes 2 x 200 mg per day) and it seems to be working. He states that he still feels like the stiffening (and falling) will happen but it does not. He started on only 200 mg per day but it became ineffective after 3 months. My son has had the chicken pox and does get cold sores (herpes simplex 1?) in his mouth. Not that I want to worry more than I already am, but I am concerned about the Steven-Johnson effect; how long could a reaction take to develope and what does it look like?
Andrea
Andrea, this can be caused by so many different things including viruses and medications. One of the first signs would be flu-like symptoms often with a rash on the chest and burning sensation on the skin. It can become life-threatening quite quickly.
Has your son been given an antiviral to help get over the herpes infection? Maintaining a good level of zinc is also important. You might want to see an infectious disease specialist or immunologist who can help treat viral infections and should be able to help you identify Stevens-Johnsons if you suspect any symptoms are starting.
Tegretol can increase sun sensitivity which in turn can make any herpes infection worse. The risk should be lessening now, but I would be really careful in the spring and summer.
Sorry I have not checked the site lately. We have been camping for a week. The kids are on Fall break. I totally agree with the sports not being #1. I was a "band geek" Actually a majorette.(back in the 80's) This is why Walt has a 4.3 GPA on a weighted 4.0 scale. He just recieved notice that he has been accepted to Ga. Southern College. Civil Engineering will be his major. Sports are a hobbie for him..If he were having trouble with his studies and finally got a grip on it...I would be ranting and raving just the same. I believe in celebrating every chance you get. The SJS was really scary. He was 13 days into dilantin when his face started getting red. It seem to get worse by the hour. His mouth was completely raw on the inside and his lips were terrible. His cheeks were so bad. His face and back ended up just peeling off. He has no scaring at all. We were very fortunate considering what could have been. While in B'ham we were told of a patient who was taking an antibotic and came down with SJS. She lost all her skin. Infection set in and she died. It is so rare that many times it's not detected in time. Talisa
Andrea, When Walt was taking Tegretol, he could tell a slight difference. It was unpredictable for him. Sometimes he thought it was working, sometimes not. He kept taking it hoping it would get better, but we knew it wasn't. I think he wanted it to work so bad that he didn't want to give up on it. The mexiletine was so different. It worked right away and last throughout the day and night. no up and down effect. This is our 3rd doctor. He is much more aggressive and really listens to Walt. He talks to him more than to me. I love that about him. I mean, Walt is the one that can explain how he feels. No offence, but neurologists are not the easiest doctors to communicate with. We love them just the same!!!ha ha Talisa