Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Randy, Is the military/government running any chromosomal/gene testing to cross reference, etc anthrax with anything? Tanis is supposed to have an appointment with a geneticist. I will take a list of questions to ask him. Probably see if I can set up an appointment with Chris. as I said, is going to do the CHARGE research blood draw. Wouldn't it be wonderful if the geneticist is the doctor who HAS to do the blood draw? Chris's cardiologist has been great and if asked would probably put the referral into TriWest, especially once I explained about T's CHARGE. If you find anything out, please let me know. He did serve during Desert Storm (army reserves) and reentered the service (Navy) Feb 2001 and I believe received the Anthrax vaccine then. I know he has had it though. Thank you. Carolyn Mother of Tanis 2 CHARGE and Denny 3 months and wife to Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Bo- It is scary to think about all of the toxins our generation and the ones since have been exposed to and how that might be contributing to birth defects, autism, depression, etc. I wonder if we'll ever really know how significant it is. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Bo- It is scary to think about all of the toxins our generation and the ones since have been exposed to and how that might be contributing to birth defects, autism, depression, etc. I wonder if we'll ever really know how significant it is. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Bo- It is scary to think about all of the toxins our generation and the ones since have been exposed to and how that might be contributing to birth defects, autism, depression, etc. I wonder if we'll ever really know how significant it is. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 - Carolyn, I dont know of any studies on Desert Storm stuff. In the past they had a few but the govt. said they were inconclusive. Imagine if they admitted to giving us something that was harmful. I do know that a lot of us Desert Storm Vets had unhealthy kids. Like said we are all different and things affect each of us to a different degree. I used to call the annual flu shot " the yearly experiment " . I didnt mean to open Pandoras box about anthrax. We all had several shots and didnt know what we were getting. I was looking for a common thread. I do know that the Erythema stuff has an unknown cause attached to it. But it fits my problem. I went from an 18 minute 3 mile to crutches in under 10 hours. Garland was transported to Cooks here in Ft Worth 18 hours after he was born with sugar level problems and the first thing that came to my mind was Desert Storm stuff. I am sure it will always be in my mind that it has something to do with CHARGE (whether it is or isnt). Tell your husband he can request Desert Storm screening and he will not be denied. At least that is what they say. He will have tons of tests ran to rule out Desert Storm Syndrome. Other than that tell him the Gunny says PT is good for the soul and it makes you forget the pain. Hope all works out well for you! Randy Garlands Poppy -- In CHARGE , messiegracie@a... wrote: > Randy, > > Is the military/government running any chromosomal/gene testing to cross > reference, etc anthrax with anything? Tanis is supposed to have an appointment > with a geneticist. I will take a list of questions to ask him. Probably see if > I can set up an appointment with Chris. as I said, is going to do the > CHARGE research blood draw. Wouldn't it be wonderful if the geneticist is > the doctor who HAS to do the blood draw? Chris's cardiologist has been great > and if asked would probably put the referral into TriWest, especially once I > explained about T's CHARGE. > > If you find anything out, please let me know. > > He did serve during Desert Storm (army reserves) and reentered the service > (Navy) Feb 2001 and I believe received the Anthrax vaccine then. I know he has > had it though. > > Thank you. > Carolyn > Mother of Tanis 2 CHARGE and Denny 3 months and wife to Chris > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 thanks Randy. PT is good for the soul. However, his last PT test put him in an ambulance with a 200+ heart rate. He is not allowed to PT. Every time he does, he ends up at the doctor's or the hospital. It just kills me that he can't even play with his kids (4 boys) any more. Some days, even eating is too much work. Thanks for all the info, especially about the Desert Storm test. Carolyn mother of Tanis 2 CHARGE and Denny 3 months and wife to Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 thanks Randy. PT is good for the soul. However, his last PT test put him in an ambulance with a 200+ heart rate. He is not allowed to PT. Every time he does, he ends up at the doctor's or the hospital. It just kills me that he can't even play with his kids (4 boys) any more. Some days, even eating is too much work. Thanks for all the info, especially about the Desert Storm test. Carolyn mother of Tanis 2 CHARGE and Denny 3 months and wife to Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 thanks Randy. PT is good for the soul. However, his last PT test put him in an ambulance with a 200+ heart rate. He is not allowed to PT. Every time he does, he ends up at the doctor's or the hospital. It just kills me that he can't even play with his kids (4 boys) any more. Some days, even eating is too much work. Thanks for all the info, especially about the Desert Storm test. Carolyn mother of Tanis 2 CHARGE and Denny 3 months and wife to Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 , Thanks for the encouraging and hopeful words. Pray you get your needed break over the next few weeks and for Aubrie's surgery and recovery. Carolyn mother of Tanis 2 CHARGE and Denny 3 months and wife to Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 , Thanks for the encouraging and hopeful words. Pray you get your needed break over the next few weeks and for Aubrie's surgery and recovery. Carolyn mother of Tanis 2 CHARGE and Denny 3 months and wife to Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 , Thanks for the encouraging and hopeful words. Pray you get your needed break over the next few weeks and for Aubrie's surgery and recovery. Carolyn mother of Tanis 2 CHARGE and Denny 3 months and wife to Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 It just sounds like you have too much going on at once for any person to manage well. We had a year like that. We refer to it as " the year from he** " . First pregnancy, DJ traveling for work all week, my dad having brain cancer, I'm in the middle of my first year of teaching, Dad comes to live with us for therapy while DJ is home only on weekends, is born, Dad dies, DJ's parents get a divorce, we move out of state... argh! It was awful! I'm so glad we don't have to relive that. You will some day be looking back with relief that this time is over. In the meantime, do your best to get through it sane. Hugs- Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 It just sounds like you have too much going on at once for any person to manage well. We had a year like that. We refer to it as " the year from he** " . First pregnancy, DJ traveling for work all week, my dad having brain cancer, I'm in the middle of my first year of teaching, Dad comes to live with us for therapy while DJ is home only on weekends, is born, Dad dies, DJ's parents get a divorce, we move out of state... argh! It was awful! I'm so glad we don't have to relive that. You will some day be looking back with relief that this time is over. In the meantime, do your best to get through it sane. Hugs- Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 It just sounds like you have too much going on at once for any person to manage well. We had a year like that. We refer to it as " the year from he** " . First pregnancy, DJ traveling for work all week, my dad having brain cancer, I'm in the middle of my first year of teaching, Dad comes to live with us for therapy while DJ is home only on weekends, is born, Dad dies, DJ's parents get a divorce, we move out of state... argh! It was awful! I'm so glad we don't have to relive that. You will some day be looking back with relief that this time is over. In the meantime, do your best to get through it sane. Hugs- Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 Carolyn, Hello, this is this time. My husband has not told me about this posting. I only get a chance to get on here about twice a week. I know how you feel, only I have one son. I have often wondered if I would wake up one morning to my husband passed out in the bathroom, due to vomiting so much. I am tring to get him to get an upper GI done at this time. I am afraid that it is much more. Your husband's symptoms are identical to Randy's when they started back in 1991 (when we met). Please keep me posted to what you find out about your husband. If it is different that what Randy was told then I will look into it here. I will keep YOU in my thoughts. If you would like to talk I would be glad to give you a call. My email is bambarn@... please RE:CHARGE or I will delete. , mama to Garland 2 1/2 > This is basically a non charge question about my husband. He has a yet > undiagnosed heart condition that has the cardiologist wracking his brain to come up > for an answer for us and a diagnosis/treatment. Just recently (last 2 weeks) > he has had a bruise come up on the left side below his ribs and a knot under > the skin. In addition to this, he has been vomiting as well and there is > usually a tinge of red. Not vomiting what he ate, but what looks like the foam > wall insulation in the can stuff. > > The answer to the obvious question is NO he did not tell his cardiologist > this last week at the appointment and NO he will not go get it checked out. He > told me last night, he doesn't want to know. He hasn't felt well in quite a > while. He has chest pains and tachycardia, higher blood pressure and cannot > play with even our 2 year old because he wears out so quickly and hurts so bad. > In addition to this, he has continuous migraines. Just last night, he told me > he's been vomiting for over 2-3 months now, almost daily. I so much want to > call his cardiologist and say, physical and who knows what please, but won't > do that to my husband. His aunt has stomach cancer and it has been malignant > so far. > > I just don't know what to do. Up til now, I've had Tanis to worry about and > to worry about because of his heart. Now has multiple symptoms. > He is going to help with the CHARGE research though--for his son's sake. I > don't know if they test the parents, but if I get a phone call about him, I > honestly would not be surprised. I didn't go to this month's appointment because > right now we have all 4 of his boys (3 months, 2, 6 and 9). I WILL go to the > next one. can't even tell you his entire condition/symptoms. He relies > on me for that, too. I may ask his cardiologist about genetics testing for > Chris. Now that we have been given a " label " for Tanis, we have some answers to > many of our questions. has some of the same problems Tanis has > physically so who knows that may be daddy's problem too. At least with a genetics > test, we can rule somethings out. > > Thank you for letting me unload. Don't want to call family because they will > " freak " and not listen. Any suggestions you have would be very helpful. > > Oh, also, Tanis had his hearing test (first referral so far, many more to > come) on Friday. The audiologist was able to do one set of the pitches, but > Tanis doesn't sit still longer than 5-7 minutes. She will repeat the entire test > in 3 months (maybe I can work with him to get him to sit still longer). His > left ear response was all 3 pitches. She did 3 tests: the booth, the one they > do on newborns with the air and another one for testing the ear itself > (tympanogram or something I think). His right ear showed 2 pitches in all of the > tests. I know the one he didn't respond to was the lowered voice and the > highest pitch. She referred him to speech and language evaluation in addition to > his already developmental delay eval. So, we are on the merry go round. > > Thanks for your ears, > Carolyn > Mother of Tanis 2 CHARGE and Denny 3 months > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 Carolyn, Hello, this is this time. My husband has not told me about this posting. I only get a chance to get on here about twice a week. I know how you feel, only I have one son. I have often wondered if I would wake up one morning to my husband passed out in the bathroom, due to vomiting so much. I am tring to get him to get an upper GI done at this time. I am afraid that it is much more. Your husband's symptoms are identical to Randy's when they started back in 1991 (when we met). Please keep me posted to what you find out about your husband. If it is different that what Randy was told then I will look into it here. I will keep YOU in my thoughts. If you would like to talk I would be glad to give you a call. My email is bambarn@... please RE:CHARGE or I will delete. , mama to Garland 2 1/2 > This is basically a non charge question about my husband. He has a yet > undiagnosed heart condition that has the cardiologist wracking his brain to come up > for an answer for us and a diagnosis/treatment. Just recently (last 2 weeks) > he has had a bruise come up on the left side below his ribs and a knot under > the skin. In addition to this, he has been vomiting as well and there is > usually a tinge of red. Not vomiting what he ate, but what looks like the foam > wall insulation in the can stuff. > > The answer to the obvious question is NO he did not tell his cardiologist > this last week at the appointment and NO he will not go get it checked out. He > told me last night, he doesn't want to know. He hasn't felt well in quite a > while. He has chest pains and tachycardia, higher blood pressure and cannot > play with even our 2 year old because he wears out so quickly and hurts so bad. > In addition to this, he has continuous migraines. Just last night, he told me > he's been vomiting for over 2-3 months now, almost daily. I so much want to > call his cardiologist and say, physical and who knows what please, but won't > do that to my husband. His aunt has stomach cancer and it has been malignant > so far. > > I just don't know what to do. Up til now, I've had Tanis to worry about and > to worry about because of his heart. Now has multiple symptoms. > He is going to help with the CHARGE research though--for his son's sake. I > don't know if they test the parents, but if I get a phone call about him, I > honestly would not be surprised. I didn't go to this month's appointment because > right now we have all 4 of his boys (3 months, 2, 6 and 9). I WILL go to the > next one. can't even tell you his entire condition/symptoms. He relies > on me for that, too. I may ask his cardiologist about genetics testing for > Chris. Now that we have been given a " label " for Tanis, we have some answers to > many of our questions. has some of the same problems Tanis has > physically so who knows that may be daddy's problem too. At least with a genetics > test, we can rule somethings out. > > Thank you for letting me unload. Don't want to call family because they will > " freak " and not listen. Any suggestions you have would be very helpful. > > Oh, also, Tanis had his hearing test (first referral so far, many more to > come) on Friday. The audiologist was able to do one set of the pitches, but > Tanis doesn't sit still longer than 5-7 minutes. She will repeat the entire test > in 3 months (maybe I can work with him to get him to sit still longer). His > left ear response was all 3 pitches. She did 3 tests: the booth, the one they > do on newborns with the air and another one for testing the ear itself > (tympanogram or something I think). His right ear showed 2 pitches in all of the > tests. I know the one he didn't respond to was the lowered voice and the > highest pitch. She referred him to speech and language evaluation in addition to > his already developmental delay eval. So, we are on the merry go round. > > Thanks for your ears, > Carolyn > Mother of Tanis 2 CHARGE and Denny 3 months > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 Carolyn, Hello, this is this time. My husband has not told me about this posting. I only get a chance to get on here about twice a week. I know how you feel, only I have one son. I have often wondered if I would wake up one morning to my husband passed out in the bathroom, due to vomiting so much. I am tring to get him to get an upper GI done at this time. I am afraid that it is much more. Your husband's symptoms are identical to Randy's when they started back in 1991 (when we met). Please keep me posted to what you find out about your husband. If it is different that what Randy was told then I will look into it here. I will keep YOU in my thoughts. If you would like to talk I would be glad to give you a call. My email is bambarn@... please RE:CHARGE or I will delete. , mama to Garland 2 1/2 > This is basically a non charge question about my husband. He has a yet > undiagnosed heart condition that has the cardiologist wracking his brain to come up > for an answer for us and a diagnosis/treatment. Just recently (last 2 weeks) > he has had a bruise come up on the left side below his ribs and a knot under > the skin. In addition to this, he has been vomiting as well and there is > usually a tinge of red. Not vomiting what he ate, but what looks like the foam > wall insulation in the can stuff. > > The answer to the obvious question is NO he did not tell his cardiologist > this last week at the appointment and NO he will not go get it checked out. He > told me last night, he doesn't want to know. He hasn't felt well in quite a > while. He has chest pains and tachycardia, higher blood pressure and cannot > play with even our 2 year old because he wears out so quickly and hurts so bad. > In addition to this, he has continuous migraines. Just last night, he told me > he's been vomiting for over 2-3 months now, almost daily. I so much want to > call his cardiologist and say, physical and who knows what please, but won't > do that to my husband. His aunt has stomach cancer and it has been malignant > so far. > > I just don't know what to do. Up til now, I've had Tanis to worry about and > to worry about because of his heart. Now has multiple symptoms. > He is going to help with the CHARGE research though--for his son's sake. I > don't know if they test the parents, but if I get a phone call about him, I > honestly would not be surprised. I didn't go to this month's appointment because > right now we have all 4 of his boys (3 months, 2, 6 and 9). I WILL go to the > next one. can't even tell you his entire condition/symptoms. He relies > on me for that, too. I may ask his cardiologist about genetics testing for > Chris. Now that we have been given a " label " for Tanis, we have some answers to > many of our questions. has some of the same problems Tanis has > physically so who knows that may be daddy's problem too. At least with a genetics > test, we can rule somethings out. > > Thank you for letting me unload. Don't want to call family because they will > " freak " and not listen. Any suggestions you have would be very helpful. > > Oh, also, Tanis had his hearing test (first referral so far, many more to > come) on Friday. The audiologist was able to do one set of the pitches, but > Tanis doesn't sit still longer than 5-7 minutes. She will repeat the entire test > in 3 months (maybe I can work with him to get him to sit still longer). His > left ear response was all 3 pitches. She did 3 tests: the booth, the one they > do on newborns with the air and another one for testing the ear itself > (tympanogram or something I think). His right ear showed 2 pitches in all of the > tests. I know the one he didn't respond to was the lowered voice and the > highest pitch. She referred him to speech and language evaluation in addition to > his already developmental delay eval. So, we are on the merry go round. > > Thanks for your ears, > Carolyn > Mother of Tanis 2 CHARGE and Denny 3 months > > > Quote Link to comment Share on other sites More sharing options...
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