Guest guest Posted March 5, 2003 Report Share Posted March 5, 2003 , >Cyclic vomiting may not be one of the more common symptoms of mito >but I know there are others on this list who have dealt with this. Just chiming in to say that my daughter is one of those. She has mito (complex IV deficiency). Have you looked up the web site for the Cyclic Vomiting Syndrome Association (cvsaonline.org)? There's info on it about research Dr. Boles is doing into the connection between cyclic vomiting and mito. Good luck, -- Mom to: Emilie (16), mito--complex IV, cp, ld Kaitlin (16), cp, asthma, a few autonomic symptoms Ian (20) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2003 Report Share Posted March 5, 2003 , >Cyclic vomiting may not be one of the more common symptoms of mito >but I know there are others on this list who have dealt with this. Just chiming in to say that my daughter is one of those. She has mito (complex IV deficiency). Have you looked up the web site for the Cyclic Vomiting Syndrome Association (cvsaonline.org)? There's info on it about research Dr. Boles is doing into the connection between cyclic vomiting and mito. Good luck, -- Mom to: Emilie (16), mito--complex IV, cp, ld Kaitlin (16), cp, asthma, a few autonomic symptoms Ian (20) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 I'm no expert on this but I do have a son with Mito. First off if I were you I would talk with your husband in private, hug each other take a cleansing breath, then call the Neuro get her an appointment and try to nip this in the butt early by putting her on a cocktail. Try to calm down, if your not thinking straight, then find someone that you trust and confide in them, your mind need's to be thinking clearly, and from reading your post I think you could use a hug!!!! I'll say a prayer for you and your daughter, OK hang in their it's not going to be a walk in the park as you already know. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 Hey, I'm throwing this out to the experts. I did go on line and read the CVS article from UMDF. So as I was scrolling through the article I got a swift kick in the gut about my " other daughter " . My healthy daughter. Ada, if some of you remember, she had a 103+ fever for 6 days. It would spike, drop, spike. Was up to 105 a couple of times. Remember how relieved I was that she had a great seizure threshold? No seizures, what a relief. Her fever has come & gone, out of the blue since then also, not as high, but very suddenly. She was tested for Strep, bladder infection, etc...., nothing. But what I didn't share, because I didn't know what to make of it, was a pain in her left side that also would come and go. Large intestine area. In the CVS article they talked about GI dysmotility, which I didn't know anything about as Lily didn't have difficulties with that, I don't think. So is anybody with me here????GI dysmotility-autonomic symptom-fever regulation-autonomic symptom. I am in FULL SCREAMING PANIC in side my head. Have not said anything to my husband, I think he would faint. What do I do now-with these " soft signs " ? Am I just completely over reacting? Do I call Lily's neuro? Do I want her on the cocktail? How do I get them to do that? I can't even think straight/rationally about this, the pain of loosing Lily is still too fresh. I don't want to throw the whole house into tupsy turvey mode either. Ada is one smart cookie, sure don't want to trigger any thoughts in her head that she is going to die like Lily. When Lily was alive and the kids would ask if they had what she had, I never lied. I told them I did not know. Oh my gosh-I can't even go there! Of course I begging,pleading, screaming with the greater power that " I'm not doing THAT again!You get no more of my babies!! " As if I have any control. I said I was not too rational right now. Help me oh great experts of these difficult waters. What would you do??? Panicked -i'll calm down later ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 Hey, I'm throwing this out to the experts. I did go on line and read the CVS article from UMDF. So as I was scrolling through the article I got a swift kick in the gut about my " other daughter " . My healthy daughter. Ada, if some of you remember, she had a 103+ fever for 6 days. It would spike, drop, spike. Was up to 105 a couple of times. Remember how relieved I was that she had a great seizure threshold? No seizures, what a relief. Her fever has come & gone, out of the blue since then also, not as high, but very suddenly. She was tested for Strep, bladder infection, etc...., nothing. But what I didn't share, because I didn't know what to make of it, was a pain in her left side that also would come and go. Large intestine area. In the CVS article they talked about GI dysmotility, which I didn't know anything about as Lily didn't have difficulties with that, I don't think. So is anybody with me here????GI dysmotility-autonomic symptom-fever regulation-autonomic symptom. I am in FULL SCREAMING PANIC in side my head. Have not said anything to my husband, I think he would faint. What do I do now-with these " soft signs " ? Am I just completely over reacting? Do I call Lily's neuro? Do I want her on the cocktail? How do I get them to do that? I can't even think straight/rationally about this, the pain of loosing Lily is still too fresh. I don't want to throw the whole house into tupsy turvey mode either. Ada is one smart cookie, sure don't want to trigger any thoughts in her head that she is going to die like Lily. When Lily was alive and the kids would ask if they had what she had, I never lied. I told them I did not know. Oh my gosh-I can't even go there! Of course I begging,pleading, screaming with the greater power that " I'm not doing THAT again!You get no more of my babies!! " As if I have any control. I said I was not too rational right now. Help me oh great experts of these difficult waters. What would you do??? Panicked -i'll calm down later ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 Hey, I'm throwing this out to the experts. I did go on line and read the CVS article from UMDF. So as I was scrolling through the article I got a swift kick in the gut about my " other daughter " . My healthy daughter. Ada, if some of you remember, she had a 103+ fever for 6 days. It would spike, drop, spike. Was up to 105 a couple of times. Remember how relieved I was that she had a great seizure threshold? No seizures, what a relief. Her fever has come & gone, out of the blue since then also, not as high, but very suddenly. She was tested for Strep, bladder infection, etc...., nothing. But what I didn't share, because I didn't know what to make of it, was a pain in her left side that also would come and go. Large intestine area. In the CVS article they talked about GI dysmotility, which I didn't know anything about as Lily didn't have difficulties with that, I don't think. So is anybody with me here????GI dysmotility-autonomic symptom-fever regulation-autonomic symptom. I am in FULL SCREAMING PANIC in side my head. Have not said anything to my husband, I think he would faint. What do I do now-with these " soft signs " ? Am I just completely over reacting? Do I call Lily's neuro? Do I want her on the cocktail? How do I get them to do that? I can't even think straight/rationally about this, the pain of loosing Lily is still too fresh. I don't want to throw the whole house into tupsy turvey mode either. Ada is one smart cookie, sure don't want to trigger any thoughts in her head that she is going to die like Lily. When Lily was alive and the kids would ask if they had what she had, I never lied. I told them I did not know. Oh my gosh-I can't even go there! Of course I begging,pleading, screaming with the greater power that " I'm not doing THAT again!You get no more of my babies!! " As if I have any control. I said I was not too rational right now. Help me oh great experts of these difficult waters. What would you do??? Panicked -i'll calm down later ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 No matter what any of us say -- we are not doctors. I would camly call the doctor and tell him what you have noticed and say, just like you did here, that this could be nothing but after losing one child you would like to error on the side of caution. Sue Ann Re: Re: Mitochondrial? Hey, I'm throwing this out to the experts. I did go on line and read the CVSarticle from UMDF. So as I was scrolling through the article I got aswift kick in the gut about my "other daughter". My healthy daughter.Ada, if some of you remember, she had a 103+ fever for 6 days. It wouldspike, drop, spike. Was up to 105 a couple of times. Remember howrelieved I was that she had a great seizure threshold? No seizures, whata relief. Her fever has come & gone, out of the blue since then also, not as high,but very suddenly. She was tested for Strep, bladder infection, etc....,nothing. But what I didn't share, because I didn't know what to make ofit, was a pain in her left side that also would come and go. Largeintestine area. In the CVS article they talked about GI dysmotility, which I didn't knowanything about as Lily didn't have difficulties with that, I don't think. So is anybody with me here????GI dysmotility-autonomic symptom-feverregulation-autonomic symptom. I am in FULL SCREAMING PANIC in side myhead. Have not said anything to my husband, I think he would faint. Whatdo I do now-with these "soft signs"? Am I just completely over reacting?Do I call Lily's neuro? Do I want her on the cocktail? How do I get themto do that? I can't even think straight/rationally about this, the painof loosing Lily is still too fresh. I don't want to throw the whole houseinto tupsy turvey mode either. Ada is one smart cookie, sure don't wantto trigger any thoughts in her head that she is going to die like Lily.When Lily was alive and the kids would ask if they had what she had, Inever lied. I told them I did not know. Oh my gosh-I can't even go there!Of course I begging,pleading, screaming with the greater power that "I'mnot doing THAT again!You get no more of my babies!!" As if I have anycontrol. I said I was not too rational right now. Help me oh great experts of these difficult waters. What would you do???Panicked -i'll calm down later________________________________________________________________Sign Up for Juno Platinum Internet Access TodayOnly $9.95 per month!Visit www.juno.comPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 , my who we know has mito, used to spike high fevers for no apparent reason. he also had GI pain and chronic diarrhea almost every day. we tried diet manipulation and it did help some with his tummy pains but nothing helped like the cocktail does, for him. i see soft signs in my daughter also. she has some headaches, used to have many tummy aches, gets muscle aches and tires noticeably easier than her classmates their GI problems also are worsened when they eat foods that were grown with pesticide use,e tc. Bananas will really set off my daughter, unless they are organic, then nothing happens. My daughter has very slight fever occasionally, but nothing someone else would notice. i would suggest keeping your children's 'environment' as 'clean' as possible, if you are not already, in order to reduce any additional stressors, so if there is a milder mito going on, it can be kept at bay, maybe? that's what I'm trying to do my daughter will probably need some components of the cocktail at least by puberty, i know i wish i had had that for myself back then, then maybe i could have functioned better myself (I came home from high school and would sleep til next day except getting up for supper) and i had major migraines and vomiting episodes too, perhaps Ada like my daughter, will have more of these issues when viral stuff is going around? we've got several nice viruses going through school here next door to you in WI oh, and i'm thinking CoQ10 helps with 's bowels. he has been having formed bm's for several months now and we have been waiting for that for a long time - he is 9 - this improvment started after he had been on a higher dose for about 6 weeks. summer can't come soon enough, cara Re: Re: Mitochondrial? Hey, I'm throwing this out to the experts. I did go on line and read the CVS article from UMDF. So as I was scrolling through the article I got a swift kick in the gut about my " other daughter " . My healthy daughter. Ada, if some of you remember, she had a 103+ fever for 6 days. It would spike, drop, spike. Was up to 105 a couple of times. Remember how relieved I was that she had a great seizure threshold? No seizures, what a relief. Her fever has come & gone, out of the blue since then also, not as high, but very suddenly. She was tested for Strep, bladder infection, etc...., nothing. But what I didn't share, because I didn't know what to make of it, was a pain in her left side that also would come and go. Large intestine area. In the CVS article they talked about GI dysmotility, which I didn't know anything about as Lily didn't have difficulties with that, I don't think. So is anybody with me here????GI dysmotility-autonomic symptom-fever regulation-autonomic symptom. I am in FULL SCREAMING PANIC in side my head. Have not said anything to my husband, I think he would faint. What do I do now-with these " soft signs " ? Am I just completely over reacting? Do I call Lily's neuro? Do I want her on the cocktail? How do I get them to do that? I can't even think straight/rationally about this, the pain of loosing Lily is still too fresh. I don't want to throw the whole house into tupsy turvey mode either. Ada is one smart cookie, sure don't want to trigger any thoughts in her head that she is going to die like Lily. When Lily was alive and the kids would ask if they had what she had, I never lied. I told them I did not know. Oh my gosh-I can't even go there! Of course I begging,pleading, screaming with the greater power that " I'm not doing THAT again!You get no more of my babies!! " As if I have any control. I said I was not too rational right now. Help me oh great experts of these difficult waters. What would you do??? Panicked -i'll calm down later ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 , my who we know has mito, used to spike high fevers for no apparent reason. he also had GI pain and chronic diarrhea almost every day. we tried diet manipulation and it did help some with his tummy pains but nothing helped like the cocktail does, for him. i see soft signs in my daughter also. she has some headaches, used to have many tummy aches, gets muscle aches and tires noticeably easier than her classmates their GI problems also are worsened when they eat foods that were grown with pesticide use,e tc. Bananas will really set off my daughter, unless they are organic, then nothing happens. My daughter has very slight fever occasionally, but nothing someone else would notice. i would suggest keeping your children's 'environment' as 'clean' as possible, if you are not already, in order to reduce any additional stressors, so if there is a milder mito going on, it can be kept at bay, maybe? that's what I'm trying to do my daughter will probably need some components of the cocktail at least by puberty, i know i wish i had had that for myself back then, then maybe i could have functioned better myself (I came home from high school and would sleep til next day except getting up for supper) and i had major migraines and vomiting episodes too, perhaps Ada like my daughter, will have more of these issues when viral stuff is going around? we've got several nice viruses going through school here next door to you in WI oh, and i'm thinking CoQ10 helps with 's bowels. he has been having formed bm's for several months now and we have been waiting for that for a long time - he is 9 - this improvment started after he had been on a higher dose for about 6 weeks. summer can't come soon enough, cara Re: Re: Mitochondrial? Hey, I'm throwing this out to the experts. I did go on line and read the CVS article from UMDF. So as I was scrolling through the article I got a swift kick in the gut about my " other daughter " . My healthy daughter. Ada, if some of you remember, she had a 103+ fever for 6 days. It would spike, drop, spike. Was up to 105 a couple of times. Remember how relieved I was that she had a great seizure threshold? No seizures, what a relief. Her fever has come & gone, out of the blue since then also, not as high, but very suddenly. She was tested for Strep, bladder infection, etc...., nothing. But what I didn't share, because I didn't know what to make of it, was a pain in her left side that also would come and go. Large intestine area. In the CVS article they talked about GI dysmotility, which I didn't know anything about as Lily didn't have difficulties with that, I don't think. So is anybody with me here????GI dysmotility-autonomic symptom-fever regulation-autonomic symptom. I am in FULL SCREAMING PANIC in side my head. Have not said anything to my husband, I think he would faint. What do I do now-with these " soft signs " ? Am I just completely over reacting? Do I call Lily's neuro? Do I want her on the cocktail? How do I get them to do that? I can't even think straight/rationally about this, the pain of loosing Lily is still too fresh. I don't want to throw the whole house into tupsy turvey mode either. Ada is one smart cookie, sure don't want to trigger any thoughts in her head that she is going to die like Lily. When Lily was alive and the kids would ask if they had what she had, I never lied. I told them I did not know. Oh my gosh-I can't even go there! Of course I begging,pleading, screaming with the greater power that " I'm not doing THAT again!You get no more of my babies!! " As if I have any control. I said I was not too rational right now. Help me oh great experts of these difficult waters. What would you do??? Panicked -i'll calm down later ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 , my who we know has mito, used to spike high fevers for no apparent reason. he also had GI pain and chronic diarrhea almost every day. we tried diet manipulation and it did help some with his tummy pains but nothing helped like the cocktail does, for him. i see soft signs in my daughter also. she has some headaches, used to have many tummy aches, gets muscle aches and tires noticeably easier than her classmates their GI problems also are worsened when they eat foods that were grown with pesticide use,e tc. Bananas will really set off my daughter, unless they are organic, then nothing happens. My daughter has very slight fever occasionally, but nothing someone else would notice. i would suggest keeping your children's 'environment' as 'clean' as possible, if you are not already, in order to reduce any additional stressors, so if there is a milder mito going on, it can be kept at bay, maybe? that's what I'm trying to do my daughter will probably need some components of the cocktail at least by puberty, i know i wish i had had that for myself back then, then maybe i could have functioned better myself (I came home from high school and would sleep til next day except getting up for supper) and i had major migraines and vomiting episodes too, perhaps Ada like my daughter, will have more of these issues when viral stuff is going around? we've got several nice viruses going through school here next door to you in WI oh, and i'm thinking CoQ10 helps with 's bowels. he has been having formed bm's for several months now and we have been waiting for that for a long time - he is 9 - this improvment started after he had been on a higher dose for about 6 weeks. summer can't come soon enough, cara Re: Re: Mitochondrial? Hey, I'm throwing this out to the experts. I did go on line and read the CVS article from UMDF. So as I was scrolling through the article I got a swift kick in the gut about my " other daughter " . My healthy daughter. Ada, if some of you remember, she had a 103+ fever for 6 days. It would spike, drop, spike. Was up to 105 a couple of times. Remember how relieved I was that she had a great seizure threshold? No seizures, what a relief. Her fever has come & gone, out of the blue since then also, not as high, but very suddenly. She was tested for Strep, bladder infection, etc...., nothing. But what I didn't share, because I didn't know what to make of it, was a pain in her left side that also would come and go. Large intestine area. In the CVS article they talked about GI dysmotility, which I didn't know anything about as Lily didn't have difficulties with that, I don't think. So is anybody with me here????GI dysmotility-autonomic symptom-fever regulation-autonomic symptom. I am in FULL SCREAMING PANIC in side my head. Have not said anything to my husband, I think he would faint. What do I do now-with these " soft signs " ? Am I just completely over reacting? Do I call Lily's neuro? Do I want her on the cocktail? How do I get them to do that? I can't even think straight/rationally about this, the pain of loosing Lily is still too fresh. I don't want to throw the whole house into tupsy turvey mode either. Ada is one smart cookie, sure don't want to trigger any thoughts in her head that she is going to die like Lily. When Lily was alive and the kids would ask if they had what she had, I never lied. I told them I did not know. Oh my gosh-I can't even go there! Of course I begging,pleading, screaming with the greater power that " I'm not doing THAT again!You get no more of my babies!! " As if I have any control. I said I was not too rational right now. Help me oh great experts of these difficult waters. What would you do??? Panicked -i'll calm down later ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2003 Report Share Posted March 7, 2003 Sue Ann, Patty, R, and Cara, Thanks to all. For calming me down and reminding me to breathe. Yes I could use a hug, yes I talked to a friend, (no I have not broached the subject yet with my husband) and yes I will call the neuro's nurse. I did calm down considerably during the day. I got good & busy, that always helps. And got good news. That helps too. I found out I have funding for a Parent to Parent Support Group for our county. The funding will pay for a place, food, daycare services, speakers and any advertising, mailing costs incurred. They also are footing the bill to send me to a two day conference on children's mental health. This Parent to Parent support is one of two things that I wanted to see created or changed, with the energy I have from Lily. Do you know what I mean? To use the positive energy I " got from Lily " to create positive changes in others lives. In her honor,( privately, in my head and heart). The other area was vaccinations. Might be making good progress there, time will tell. Good night all. Thanks ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2003 Report Share Posted March 7, 2003 , Just wanted to let you know that in my area of the country (MI), almost all of my friends have been struggling with a variety of viruses that have kept their (normal) kids with sporadic fevers, vomiting, weird aches and pains. All of our peds say this is one of the worst winters for illness. In our family we have been fighting illness for over a month, but so has everyone else with small children! I know every time my (healthy so far) daughter Cecilia does some strange behavior or has a weird symptom the "mito tape" plays over and over in my head! I hope you are still feeling better and that health comes soon to your house! PINE LAKE TOWNSHIP wrote: Sue Ann, Patty, R, and Cara, Thanks to all. For calming me down and reminding me to breathe. Yes I could use a hug, yes I talked to a friend, (no I have not broached the subject yet with my husband) and yes I will call the neuro's nurse. I did calm down considerably during the day. I got good & busy, that always helps. And got good news. That helps too. I found out I have funding for a Parent to Parent Support Group for our county. The funding will pay for a place, food, daycare services, speakers and any advertising, mailing costs incurred. They also are footing the bill to send me to a two day conference on children's mental health. This Parent to Parent support is one of two things that I wanted to see created or changed, with the energy I have from Lily. Do you know what I mean? To use the positive energy I "got from Lily" to create positive changes in others lives. In her honor,( privately, in my head and heart). The other area was vaccinations. Might be making good progress there, time will tell. Good night all. Thanks ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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