Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 Val, Do NOT over load yourself with info... Easy said... right? LOL As for the tonsil involvement... REMEMBER tonsillitis is VERY VERY Common in kids... IF you are the " carrier " you would STILL BE GETTING fevers from FMF .... HIDs.... TRAPs... etc... Also it is unusual to see the tonsil involvement in the other disorders... Check out the links... and read up on FMF symptoms and HIDS.... Also there is a web site run by Charyn, one of our old time members for TRAPs.... There is LESS info on TRAPs out there since it is a 'newer " found mutation. Ignorance is bliss but education IS THE BEST! God Bless Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 Val, Do NOT over load yourself with info... Easy said... right? LOL As for the tonsil involvement... REMEMBER tonsillitis is VERY VERY Common in kids... IF you are the " carrier " you would STILL BE GETTING fevers from FMF .... HIDs.... TRAPs... etc... Also it is unusual to see the tonsil involvement in the other disorders... Check out the links... and read up on FMF symptoms and HIDS.... Also there is a web site run by Charyn, one of our old time members for TRAPs.... There is LESS info on TRAPs out there since it is a 'newer " found mutation. Ignorance is bliss but education IS THE BEST! God Bless Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 We are all still learning to deal with the situation. Personally, I find that, while the rollercoaster of emotions still goes on and on, the peaks and valley's get smoother. In other words, on the days when I am worried and stressed about it, I handle it much better than I first did, when I was first reading and educating myself. I think we all immediately start looking back at our own histories as well.... I got canker sores all through college.... but I attributed them to stress. Related? Who knows. When I was a child I used to complain to my Mom about knee pains all the time. They wrote it off as " growing pains " . Related? Who knows. What helped me feel better was to get organized. Start documenting things in a centralized place. Start keeping track of exactly what tests have been done and what has and hasn't been ruled out. For some reason, just being organized makes me feel like somehow I have some control. Which of course, I don't. But I feel better anyway. Until the next fever hits and the cycle starts all over again... for Quintin and for me. It isn't easy. - Gwen & Quintin, age 4, fevers starting at age 2. > OK, who was it that said that ignorance was bliss? The more I read > the more scared I get. > Now we are concerned with genetic testing and I'm thinking back to my > childhood about having swollen glands all the time, getting my > tonsils out at 5 1/2 years old and getting canker sores a lot. > Did I do this to my daughter?! I guess, in reality, everything that > my sweet pea is she got from us but this is a really bad thing! > Sorry. I'm new here and just learning to deal with this situation. I > still don't know the outcome.... > Val Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 We are all still learning to deal with the situation. Personally, I find that, while the rollercoaster of emotions still goes on and on, the peaks and valley's get smoother. In other words, on the days when I am worried and stressed about it, I handle it much better than I first did, when I was first reading and educating myself. I think we all immediately start looking back at our own histories as well.... I got canker sores all through college.... but I attributed them to stress. Related? Who knows. When I was a child I used to complain to my Mom about knee pains all the time. They wrote it off as " growing pains " . Related? Who knows. What helped me feel better was to get organized. Start documenting things in a centralized place. Start keeping track of exactly what tests have been done and what has and hasn't been ruled out. For some reason, just being organized makes me feel like somehow I have some control. Which of course, I don't. But I feel better anyway. Until the next fever hits and the cycle starts all over again... for Quintin and for me. It isn't easy. - Gwen & Quintin, age 4, fevers starting at age 2. > OK, who was it that said that ignorance was bliss? The more I read > the more scared I get. > Now we are concerned with genetic testing and I'm thinking back to my > childhood about having swollen glands all the time, getting my > tonsils out at 5 1/2 years old and getting canker sores a lot. > Did I do this to my daughter?! I guess, in reality, everything that > my sweet pea is she got from us but this is a really bad thing! > Sorry. I'm new here and just learning to deal with this situation. I > still don't know the outcome.... > Val Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Thanks for your encouraging words. It is so frustrating. You want to fix everything for your kids and this is so untouchable, it seems. The best we can do is treat them as well as we can during these episodes and make sure they are as comfortable as possible but it’s hard not to be able to make it “go away”! It seems that I’ve become a pro at handling high fevers in no time so I suppose I can learn to handle the seizures, if that’s what we have to do. And I do know that there isn’t anything that we “did” wrong but you still wish it could be better/easier for your kids. Education is the answer and being a part of huge sources of information (like this site) is a good start. I just wish there were more answers. Like I said before – sorry, I’m fairly new to this. Thanks again for your help and understanding. It’s so nice to have folks like you that truly do understand! Val Mom of Kira – 18 months Re: More information We are all still learning to deal with the situation. Personally, I find that, while the rollercoaster of emotions still goes on and on, the peaks and valley's get smoother. In other words, on the days when I am worried and stressed about it, I handle it much better than I first did, when I was first reading and educating myself. I think we all immediately start looking back at our own histories as well.... I got canker sores all through college.... but I attributed them to stress. Related? Who knows. When I was a child I used to complain to my Mom about knee pains all the time. They wrote it off as " growing pains " . Related? Who knows. What helped me feel better was to get organized. Start documenting things in a centralized place. Start keeping track of exactly what tests have been done and what has and hasn't been ruled out. For some reason, just being organized makes me feel like somehow I have some control. Which of course, I don't. But I feel better anyway. Until the next fever hits and the cycle starts all over again... for Quintin and for me. It isn't easy. - Gwen & Quintin, age 4, fevers starting at age 2. > OK, who was it that said that ignorance was bliss? The more I read > the more scared I get. > Now we are concerned with genetic testing and I'm thinking back to my > childhood about having swollen glands all the time, getting my > tonsils out at 5 1/2 years old and getting canker sores a lot. > Did I do this to my daughter?! I guess, in reality, everything that > my sweet pea is she got from us but this is a really bad thing! > Sorry. I'm new here and just learning to deal with this situation. I > still don't know the outcome.... > Val Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Thanks for your encouraging words. It is so frustrating. You want to fix everything for your kids and this is so untouchable, it seems. The best we can do is treat them as well as we can during these episodes and make sure they are as comfortable as possible but it’s hard not to be able to make it “go away”! It seems that I’ve become a pro at handling high fevers in no time so I suppose I can learn to handle the seizures, if that’s what we have to do. And I do know that there isn’t anything that we “did” wrong but you still wish it could be better/easier for your kids. Education is the answer and being a part of huge sources of information (like this site) is a good start. I just wish there were more answers. Like I said before – sorry, I’m fairly new to this. Thanks again for your help and understanding. It’s so nice to have folks like you that truly do understand! Val Mom of Kira – 18 months Re: More information We are all still learning to deal with the situation. Personally, I find that, while the rollercoaster of emotions still goes on and on, the peaks and valley's get smoother. In other words, on the days when I am worried and stressed about it, I handle it much better than I first did, when I was first reading and educating myself. I think we all immediately start looking back at our own histories as well.... I got canker sores all through college.... but I attributed them to stress. Related? Who knows. When I was a child I used to complain to my Mom about knee pains all the time. They wrote it off as " growing pains " . Related? Who knows. What helped me feel better was to get organized. Start documenting things in a centralized place. Start keeping track of exactly what tests have been done and what has and hasn't been ruled out. For some reason, just being organized makes me feel like somehow I have some control. Which of course, I don't. But I feel better anyway. Until the next fever hits and the cycle starts all over again... for Quintin and for me. It isn't easy. - Gwen & Quintin, age 4, fevers starting at age 2. > OK, who was it that said that ignorance was bliss? The more I read > the more scared I get. > Now we are concerned with genetic testing and I'm thinking back to my > childhood about having swollen glands all the time, getting my > tonsils out at 5 1/2 years old and getting canker sores a lot. > Did I do this to my daughter?! I guess, in reality, everything that > my sweet pea is she got from us but this is a really bad thing! > Sorry. I'm new here and just learning to deal with this situation. I > still don't know the outcome.... > Val Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2008 Report Share Posted February 25, 2008 As far as ex-wife I think she is still infected, she is unwilling to tell me much but is demanding I get her some invermectin. She also asks me what I am doing to combat the parasites. She uses the epsom salts as well. My daughter got this when she went into ground zero and played with my clothes. I did not know she was in there until she had played there for a while. She had 3 bites on her face and then nothing. Funny thing is that when I meet with people at work, I see one or more of them start scratching their head or face. I wonder if some people are just not effected much by these things. My 2 other kids have shown no signs of a problem. I saw glowers all around the offices next to mine at work, but no one else has gotten infected. Dr. Harvey felt that since I got so many bites from the original bird mites, my immune system could not keep up. Anyway, I slept through the night last night again without any activity. I am hopeful that they are pretty much gone. Be careful if they are not internal yet. I went for the first couple months without internal problems, only on the skin, then when I started salting them, they went into the body and things got worse. Quote Link to comment Share on other sites More sharing options...
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