So glad to hearth she has a great support network within school and out of school. That support network within school should also be a comfort to you, because there may be times you may feel like you need someone to talk to about things. That said, you are always welcome to talk to me or others here.
MMC~ How fabulous... love the realness from you. Sometimes, if you can help someone else in a small way, you move mountains by just giving them hope. I'm so happy you feel and have gratitude for your and your familys' HEALTH. Love and health are the ONLY things that matter, People may think they know that, but until you feel it, it's hard to explain. I'm so happy her family is supportive too~ I think all of us on here, have had days where we didn't have any hope. Personally, that is what motivates me, to make sure she ALWAYS has the right mind-set. And you, are a gear in making that happen. My faith in humanity is boosted too, by you, because sometimes you wonder if people really give a da**. And obviously you do. I had another thought, If you can work with her privately somewhere to be able to control the thermostat, (like a gym) or etc. you could set it lower for her, sometimes even non-private work-out places will let you lower it, if it is at a time of day(or night) that's not very crowded.
MMC said:
All: I am reading through some of these responses and I am truly awestruck by your compassion and care for each other and for my kid who has this crappy disease. However, to be honest, I am not deserving of the accolades that some of you have given me: the girl I am trying to help has helped me achieve a personal goal of mine, and, therefore, there isn't much I wouldn't do for her. That said, I don't want anyone to think I am some sort of altruistic do gooder helping some poor afflicted child: she has a wonderful family, a phenomenal boyfriend, and a huge network of friends around her who also support her, Furthermore, my teacher colleagues have been nothing short of amazing in understanding what is going on with her and allowing her to work at her own pace to catch up with what she has missed. We have a great community here, and I am a part of that and nothing more.
Every morning, I wake up secure in the notion that my wife, my children and I will not suffer excruciating pain at any point in the day. Our hands will not swell , nor will our feet, and we will enjoy a relatively peaceful existence. Most of you, however, are not secure in that knowledge. I imagine many of you watch the clock with a feeling of trepidation, hoping against hope that your body, if only for a day, will not turn against you. In spite of that, you go out of your way to help some dude (me) who is groping around more or less blindly to spare himself the emotional pain of watching one of his stars succumb to the disease you deal with every day. I appreciate the kind words that you have said about me, but , more than that, I appreciate the compassion and humanity that all of you have exhibited in helping me to understand how to help a child, when many of you may not have received that same consideration yourselves. Groups like this really restore your faith in humanity !
Thanks for posting that link~ Fabulous news... the more ways to kick this things butt the better! One problem I have found in the treatment being so varied is that this is actually NOT A DISEASE. By classification it is a "systematic dysfunction", which I think that is why all the variations. The fact that 6 seperate sodium channels can be impacted is quite odd. If you look up "Brine" on wikkiepedia and look at how sodium and heat re-act in any individual system, it is amazing. Each of our systems, vascular, cellular, lymphatic, etc get individually affected. I think if someone could put in order this systematic dysfunction, maybe that would help isolate the origin of the first of the systematic dysfunction, and thus... wah-la, the cure. Love and light, and Happy Monday~
The other day I read the remission article using the CLS that you are talking about. When I went to the doctor, asked him to do the blood test for the mutated gene. He would not send it to Germany to have it tested. Not sure why he would not do that? It has to be sent somewhere, why not Germany? I have read about that CLS and I could consider it but would want to finish this prednisone test first, then there is an infusion (is that with Ketamine?) possibility. Yes I am like you. I am willing to try anything to get a better quality of life. I never liked that term "quality of life" until I got this dreaded disease. Jim
Heidi said:They have MANY stories of remissions of this disease in other countries. I have a stack a foot tall of them, that I have taken in to doctors, and requested the same treatment(s). To be denied here in the US. ALL of the remissions involve a medical coma. Most of which are produced by Ketamine and _______ which is about 5-7 different things. The coma usually has to be solid and deep for about 3-4 days. All medicines I have listed give the weight/height/gender/age of patients. Mayo Clinic denied me, after passing ALL there cardio tests, because they site it is better for me to have "some" quality of life, then "No" life. Because of the risk of not waking up. The reason Ketamine is effective is that it is able to re-set your central nervous system, where the mutated cells are. Your brain is actually seperate at that point, where you wouldn't even know your name if you wern't in the coma. When they infuse the lidocaine systematically your organs recieve the same message, so Your genetically mutated cells become non-aggressive and that is why when you wake up, you are symtom free. Anyway, I sound like a doctor, but It's just years of research. So, far ALL the treatments are similar that I have read, some identical, Countries like Argentina, Germany, etc. do it- Presently I am looking into the Apollo Group of hospitals, (India and Thialand) where the average procedure is 3-5 thousand dollars, for a 20 day stay in their country, with a guest. I have not found a doctor to do it yet.
Kentuckian said:I went back to see if I could find the most recent stories or notes regarding remissions. One is the article below. I checked my notes on the other person whose EM went away. Her EM had started around age 10 after having some seizures. Eight years later she had a couple of seizures, went into a coma and when she came out of the coma the EM was gone and had not come back as of yet, several months later. But of course it still could come back. But I'd heard of others who went into remission after coma and it was assumed it was the IV fluids that helped or that the treatment being tried for the EM worked (were intentionally put into coma due to the type of medication being tried). I've heard of one person who gets IV fluids every week or two and it significantly helps her EM though there is no drug added, just needs the hydration.
But there are so many different underlying disorders that seem to be able to cause EM that it's hard for others of us to know what may be helpful for us. I've heard of people trying all these methods mentioned in this post who did NOT improve with these methods. There are no sure things.
Hey : Just an update on my kid- she is doing great! She has occasional flares but she is back to playing and by all accounts she is doing very well ! I know that this can change at any time, but for the time being, we are very excited for her. I can't thank you all enough for your help though, and I won't forget it and will keep you updated. It is interesting- her doctor says her flares are anxiety related, and it seems that not playing or worrying about not playing was exacerbating the flares. When she is out on the field, her cares melt away and she is focused.
@Amazon_Princess Hi, I’m new to the group. As a non Indian citizen do you need a ‘guest’ to go through with the coma? If you do then I can help, I’m Indian.
I have depression because of erythromelalgia