Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 In a message dated 7/19/2004 9:34:51 PM Eastern Daylight Time, michelledg33@... writes: I was then going to run a poll and ask about anthrax. I had the shots going to Desert Storm and started upchucking daily soon after. Still do Oh my gosh my daughter who just graduated from college is starting to work in the only lab in the world that makes the Anthrax vaccine. As if I don't have enough to worry about with my CHARGE'r. E GADS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Carolyn- Ok, I know nothing about what your husband is going through -- but, my goodness, am I worried for you!! Thankfully, everyone else in our family is healthy. If I had to deal with more than one set of problems, I'd surely go insane. I hope he gets his stuff figured out soon. It worries me that he seems to be in such denial. That isn't going to help any of you. I can understand his denial, but it's still troubling. Good luck to you all- Hugs- Michele w mom to Aubrie (6 rys )CHaRgE and (12 yrs) wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Carolyn- Ok, I know nothing about what your husband is going through -- but, my goodness, am I worried for you!! Thankfully, everyone else in our family is healthy. If I had to deal with more than one set of problems, I'd surely go insane. I hope he gets his stuff figured out soon. It worries me that he seems to be in such denial. That isn't going to help any of you. I can understand his denial, but it's still troubling. Good luck to you all- Hugs- Michele w mom to Aubrie (6 rys )CHaRgE and (12 yrs) wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Carolyn- Ok, I know nothing about what your husband is going through -- but, my goodness, am I worried for you!! Thankfully, everyone else in our family is healthy. If I had to deal with more than one set of problems, I'd surely go insane. I hope he gets his stuff figured out soon. It worries me that he seems to be in such denial. That isn't going to help any of you. I can understand his denial, but it's still troubling. Good luck to you all- Hugs- Michele w mom to Aubrie (6 rys )CHaRgE and (12 yrs) wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 - You may think I am crazy, but have your husband ask to see a dermatologist. Then inquire about Erythema Nervosa/Nervosum. It is a skin thing that causes what I call lumps, bruising and chest pains. I ran a poll asking about parents being in the military. I was then going to run a poll and ask about anthrax. I had the shots going to Desert Storm and started upchucking daily soon after. Still do. I also tire easily. I was eventually going to ask about CHARGE and its association to anthrax. A shot in the dark, who knows. I am not looking for blame, just maybe a piece of the CHARGE puzzle. Thats my 2 cents. One other thing....Diane if you really want your husband home I am still connected and will help you make it happen. EFM is not a bad thing for families who rate it and your family rates it big time! Randy, Garlands Poppy -- In CHARGE , messiegracie@a... wrote: > 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 20, 2004 Report Share Posted July 20, 2004 -- If your daughter is in the ONLY lab in the world, she is probably in the safest lab as well! I am curious though if there might be a connection to CHARGE and the Gulf War stuff. I spent 2 weeks in the hospital back in 93 while every test in the world was ran on me and they did not diagnose my problem as a result of anthrax. Just seems coincidental. I have watched this board for a long time now and have read about genes and chromosomes and lots of other possiblities as to a reason for CHARGE. Just curious as to who else might have the same question as me. Your daughter will be OK. Randy - In CHARGE , KAV427@a... wrote: > In a message dated 7/19/2004 9:34:51 PM Eastern Daylight Time, > michelledg33@y... writes: > I was then > going to run a poll and ask about anthrax. I had the shots going to > Desert Storm and started upchucking daily soon after. Still do > Oh my gosh my daughter who just graduated from college is starting to work in > the only lab in the world that makes the Anthrax vaccine. As if I don't have > enough to worry about with my CHARGE'r. E GADS > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 -- If your daughter is in the ONLY lab in the world, she is probably in the safest lab as well! I am curious though if there might be a connection to CHARGE and the Gulf War stuff. I spent 2 weeks in the hospital back in 93 while every test in the world was ran on me and they did not diagnose my problem as a result of anthrax. Just seems coincidental. I have watched this board for a long time now and have read about genes and chromosomes and lots of other possiblities as to a reason for CHARGE. Just curious as to who else might have the same question as me. Your daughter will be OK. Randy - In CHARGE , KAV427@a... wrote: > In a message dated 7/19/2004 9:34:51 PM Eastern Daylight Time, > michelledg33@y... writes: > I was then > going to run a poll and ask about anthrax. I had the shots going to > Desert Storm and started upchucking daily soon after. Still do > Oh my gosh my daughter who just graduated from college is starting to work in > the only lab in the world that makes the Anthrax vaccine. As if I don't have > enough to worry about with my CHARGE'r. E GADS > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Meg has posted a marvelous answer as to why CHARGE is currently believed to be genetic and not due to teratogens; anthrax or any other. You might want to search the archive under sent by Meg Hefner or under the topic of genetics. At the same time she acknowledges the complexity and how teratogens in combination of genes can complicate understanding the origin of syndromes. Many of us question exposures, but there is no one thing that all of us are exposed to. My father was in the air force in the early 50's, but we have had no military exposure since. Kim L > -- > If your daughter is in the ONLY lab in the world, she is probably > in the safest lab as well! I am curious though if there might be a > connection to CHARGE and the Gulf War stuff. I spent 2 weeks in the > hospital back in 93 while every test in the world was ran on me and > they did not diagnose my problem as a result of anthrax. Just seems > coincidental. I have watched this board for a long time now and have > read about genes and chromosomes and lots of other possiblities as to > a reason for CHARGE. Just curious as to who else might have the same > question as me. Your daughter will be OK. > > Randy > > > > > - In CHARGE , KAV427@a... wrote: >> In a message dated 7/19/2004 9:34:51 PM Eastern Daylight Time, >> michelledg33@y... writes: >> I was then >> going to run a poll and ask about anthrax. I had the shots going > to >> Desert Storm and started upchucking daily soon after. Still do >> Oh my gosh my daughter who just graduated from college is starting > to work in >> the only lab in the world that makes the Anthrax vaccine. As if I > don't have >> enough to worry about with my CHARGE'r. E GADS >> > >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Meg has posted a marvelous answer as to why CHARGE is currently believed to be genetic and not due to teratogens; anthrax or any other. You might want to search the archive under sent by Meg Hefner or under the topic of genetics. At the same time she acknowledges the complexity and how teratogens in combination of genes can complicate understanding the origin of syndromes. Many of us question exposures, but there is no one thing that all of us are exposed to. My father was in the air force in the early 50's, but we have had no military exposure since. Kim L > -- > If your daughter is in the ONLY lab in the world, she is probably > in the safest lab as well! I am curious though if there might be a > connection to CHARGE and the Gulf War stuff. I spent 2 weeks in the > hospital back in 93 while every test in the world was ran on me and > they did not diagnose my problem as a result of anthrax. Just seems > coincidental. I have watched this board for a long time now and have > read about genes and chromosomes and lots of other possiblities as to > a reason for CHARGE. Just curious as to who else might have the same > question as me. Your daughter will be OK. > > Randy > > > > > - In CHARGE , KAV427@a... wrote: >> In a message dated 7/19/2004 9:34:51 PM Eastern Daylight Time, >> michelledg33@y... writes: >> I was then >> going to run a poll and ask about anthrax. I had the shots going > to >> Desert Storm and started upchucking daily soon after. Still do >> Oh my gosh my daughter who just graduated from college is starting > to work in >> the only lab in the world that makes the Anthrax vaccine. As if I > don't have >> enough to worry about with my CHARGE'r. E GADS >> > >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 -- Kim, First I will says thanks for the info and saving me time digging through the archives. You are a very knowledgeable person when it comes to CHARGE and have unknowingly given me an education on it. Thank you again. Like I said, I am not looking for blame just answers. Either way I would not trade my little guy for nothing in the world. Sorry to hear about all of your delays. One thing I have come to grips with is that everything is for a reason. And oh yeah, you cant have your patience right now! Once again Thanks Randy, Garlands Poppy - In CHARGE , Kim Lauger <klauger@e...> wrote: > Meg has posted a marvelous answer as to why CHARGE is currently believed to > be genetic and not due to teratogens; anthrax or any other. You might want > to search the archive under sent by Meg Hefner or under the topic of > genetics. > > At the same time she acknowledges the complexity and how teratogens in > combination of genes can complicate understanding the origin of syndromes. > Many of us question exposures, but there is no one thing that all of us are > exposed to. > > My father was in the air force in the early 50's, but we have had no > military exposure since. > > Kim L > > > > On 7/19/04 8:00 PM, " Goodwin " <michelledg33@y...> wrote: > > > -- > > If your daughter is in the ONLY lab in the world, she is probably > > in the safest lab as well! I am curious though if there might be a > > connection to CHARGE and the Gulf War stuff. I spent 2 weeks in the > > hospital back in 93 while every test in the world was ran on me and > > they did not diagnose my problem as a result of anthrax. Just seems > > coincidental. I have watched this board for a long time now and have > > read about genes and chromosomes and lots of other possiblities as to > > a reason for CHARGE. Just curious as to who else might have the same > > question as me. Your daughter will be OK. > > > > Randy > > > > > > > > > > - In CHARGE , KAV427@a... wrote: > >> In a message dated 7/19/2004 9:34:51 PM Eastern Daylight Time, > >> michelledg33@y... writes: > >> I was then > >> going to run a poll and ask about anthrax. I had the shots going > > to > >> Desert Storm and started upchucking daily soon after. Still do > >> Oh my gosh my daughter who just graduated from college is starting > > to work in > >> the only lab in the world that makes the Anthrax vaccine. As if I > > don't have > >> enough to worry about with my CHARGE'r. E GADS > >> > > > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 We don't have any ties to the military so anthrax and other chemicals are not a concern for us. But my husband does work with explosives and those chemicals get on his skin etc. I don't know of any harm that they cause expect for nitro headaches. Just my 2 cents. It seems that CHARGE is truly a random occurence. We've all talked this through so many times and have never found any one thing that we all have in common. Perhaps birth defects, autism, etc is not due to just one thing but rather a multitude of things in just the right sequence or at just the right time or in just the right combination. I'm getting comfortable with the idea that we may never know. Although I'd love it if we did find out more about the gene itself and then how it occurs. Michele W mom to aubrie 6 yrs CHaRgE and 12 yrs wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 We don't have any ties to the military so anthrax and other chemicals are not a concern for us. But my husband does work with explosives and those chemicals get on his skin etc. I don't know of any harm that they cause expect for nitro headaches. Just my 2 cents. It seems that CHARGE is truly a random occurence. We've all talked this through so many times and have never found any one thing that we all have in common. Perhaps birth defects, autism, etc is not due to just one thing but rather a multitude of things in just the right sequence or at just the right time or in just the right combination. I'm getting comfortable with the idea that we may never know. Although I'd love it if we did find out more about the gene itself and then how it occurs. Michele W mom to aubrie 6 yrs CHaRgE and 12 yrs wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Just to pipe in my ten cents here. I grew up in the Pacific Northwest out in the wilderness and several of my friends have had children with very random, strange birth defects. When I was a kid they sprayed a lot of DDT along the roads as a pesticide and I have often thought about how that might be involved. I believe there are three of us, all the same age, from within about a 3 square mile area that have had weird stuff happen. There is a club foot and two different skull abnormalities and then with Charge... I guess that's four of us. There are others that are yet to have babies from where I grew up. I guess we'll see if there are any more. I really have no idea how it might be involved but would be interested in any other chemical exposure stories. Bo , 2. _____ From: Michele Westmaas Sent: Monday, July 19, 2004 9:27 PM To: CHARGE Subject: Re: Re: HELP with HUSBAND We don't have any ties to the military so anthrax and other chemicals are not a concern for us. But my husband does work with explosives and those chemicals get on his skin etc. I don't know of any harm that they cause expect for nitro headaches. Just my 2 cents. It seems that CHARGE is truly a random occurence. We've all talked this through so many times and have never found any one thing that we all have in common. Perhaps birth defects, autism, etc is not due to just one thing but rather a multitude of things in just the right sequence or at just the right time or in just the right combination. I'm getting comfortable with the idea that we may never know. Although I'd love it if we did find out more about the gene itself and then how it occurs. Michele W mom to aubrie 6 yrs CHaRgE and 12 yrs wife to DJ Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Just to pipe in my ten cents here. I grew up in the Pacific Northwest out in the wilderness and several of my friends have had children with very random, strange birth defects. When I was a kid they sprayed a lot of DDT along the roads as a pesticide and I have often thought about how that might be involved. I believe there are three of us, all the same age, from within about a 3 square mile area that have had weird stuff happen. There is a club foot and two different skull abnormalities and then with Charge... I guess that's four of us. There are others that are yet to have babies from where I grew up. I guess we'll see if there are any more. I really have no idea how it might be involved but would be interested in any other chemical exposure stories. Bo , 2. _____ From: Michele Westmaas Sent: Monday, July 19, 2004 9:27 PM To: CHARGE Subject: Re: Re: HELP with HUSBAND We don't have any ties to the military so anthrax and other chemicals are not a concern for us. But my husband does work with explosives and those chemicals get on his skin etc. I don't know of any harm that they cause expect for nitro headaches. Just my 2 cents. It seems that CHARGE is truly a random occurence. We've all talked this through so many times and have never found any one thing that we all have in common. Perhaps birth defects, autism, etc is not due to just one thing but rather a multitude of things in just the right sequence or at just the right time or in just the right combination. I'm getting comfortable with the idea that we may never know. Although I'd love it if we did find out more about the gene itself and then how it occurs. Michele W mom to aubrie 6 yrs CHaRgE and 12 yrs wife to DJ Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Just to pipe in my ten cents here. I grew up in the Pacific Northwest out in the wilderness and several of my friends have had children with very random, strange birth defects. When I was a kid they sprayed a lot of DDT along the roads as a pesticide and I have often thought about how that might be involved. I believe there are three of us, all the same age, from within about a 3 square mile area that have had weird stuff happen. There is a club foot and two different skull abnormalities and then with Charge... I guess that's four of us. There are others that are yet to have babies from where I grew up. I guess we'll see if there are any more. I really have no idea how it might be involved but would be interested in any other chemical exposure stories. Bo , 2. _____ From: Michele Westmaas Sent: Monday, July 19, 2004 9:27 PM To: CHARGE Subject: Re: Re: HELP with HUSBAND We don't have any ties to the military so anthrax and other chemicals are not a concern for us. But my husband does work with explosives and those chemicals get on his skin etc. I don't know of any harm that they cause expect for nitro headaches. Just my 2 cents. It seems that CHARGE is truly a random occurence. We've all talked this through so many times and have never found any one thing that we all have in common. Perhaps birth defects, autism, etc is not due to just one thing but rather a multitude of things in just the right sequence or at just the right time or in just the right combination. I'm getting comfortable with the idea that we may never know. Although I'd love it if we did find out more about the gene itself and then how it occurs. Michele W mom to aubrie 6 yrs CHaRgE and 12 yrs wife to DJ Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Thanks . The hardest thing is that there is so much going on. His 2 oldest boys are going back to Georgia to their mom on Friday (I'm flying them back with the baby). Plus the added stress of being apart from them and being in the Navy away from any family (especially the boys). I think this is part of his problem as well. Add to this, we had another son that was unplanned but such a big blessing. He has informed me NO MORE--we both were scared through this last pregnancy and another one would be a breaking point for him I believe. If I can get a referral for a therapist or something and TriWest (Tricare) will pay for it, I think I will ask my doctor for the referral. That way I won't lose it or go insane and I can talk to some one. Carolyn Mother of Tanis 2 CHARGE and Denny 3 months and wife of Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Thanks . The hardest thing is that there is so much going on. His 2 oldest boys are going back to Georgia to their mom on Friday (I'm flying them back with the baby). Plus the added stress of being apart from them and being in the Navy away from any family (especially the boys). I think this is part of his problem as well. Add to this, we had another son that was unplanned but such a big blessing. He has informed me NO MORE--we both were scared through this last pregnancy and another one would be a breaking point for him I believe. If I can get a referral for a therapist or something and TriWest (Tricare) will pay for it, I think I will ask my doctor for the referral. That way I won't lose it or go insane and I can talk to some one. Carolyn Mother of Tanis 2 CHARGE and Denny 3 months and wife of Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Thanks . The hardest thing is that there is so much going on. His 2 oldest boys are going back to Georgia to their mom on Friday (I'm flying them back with the baby). Plus the added stress of being apart from them and being in the Navy away from any family (especially the boys). I think this is part of his problem as well. Add to this, we had another son that was unplanned but such a big blessing. He has informed me NO MORE--we both were scared through this last pregnancy and another one would be a breaking point for him I believe. If I can get a referral for a therapist or something and TriWest (Tricare) will pay for it, I think I will ask my doctor for the referral. That way I won't lose it or go insane and I can talk to some one. Carolyn Mother of Tanis 2 CHARGE and Denny 3 months and wife of Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 We did ask the cardiologist if his heart condition could be related to Desert Storm, but he said no. We are stationed in San Diego at 32nd Street Naval Station and get all medical care at Balboa Naval Medical Hospital. The hospital is the reason they sent us here (PCS'd 9 weeks ago)--both for my husband and our EFM son. It was either here or Bethesda. Since we were in Monterey, CA, they kept us west coast. Isn't there a study going on right now about Desert Storm and medical problems? Do you know where I can get the info on it? The more proof I have with my husband, the better it is. He is worried (won't tell me though) that it is something very bad/serious. He stood with Tanis as Tanis fought so hard to just live at times. He is all " male " --don't want to offend anyone. He just doesn't want to need anyone and feels he needs to be strong and tough for his 4 boys. I have told him, if he's not here, he can't be strong for them. I will make the suggestion and ask the doctor when we see him next. Thank you so much for the information, Randy. 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 We did ask the cardiologist if his heart condition could be related to Desert Storm, but he said no. We are stationed in San Diego at 32nd Street Naval Station and get all medical care at Balboa Naval Medical Hospital. The hospital is the reason they sent us here (PCS'd 9 weeks ago)--both for my husband and our EFM son. It was either here or Bethesda. Since we were in Monterey, CA, they kept us west coast. Isn't there a study going on right now about Desert Storm and medical problems? Do you know where I can get the info on it? The more proof I have with my husband, the better it is. He is worried (won't tell me though) that it is something very bad/serious. He stood with Tanis as Tanis fought so hard to just live at times. He is all " male " --don't want to offend anyone. He just doesn't want to need anyone and feels he needs to be strong and tough for his 4 boys. I have told him, if he's not here, he can't be strong for them. I will make the suggestion and ask the doctor when we see him next. Thank you so much for the information, Randy. 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 We did ask the cardiologist if his heart condition could be related to Desert Storm, but he said no. We are stationed in San Diego at 32nd Street Naval Station and get all medical care at Balboa Naval Medical Hospital. The hospital is the reason they sent us here (PCS'd 9 weeks ago)--both for my husband and our EFM son. It was either here or Bethesda. Since we were in Monterey, CA, they kept us west coast. Isn't there a study going on right now about Desert Storm and medical problems? Do you know where I can get the info on it? The more proof I have with my husband, the better it is. He is worried (won't tell me though) that it is something very bad/serious. He stood with Tanis as Tanis fought so hard to just live at times. He is all " male " --don't want to offend anyone. He just doesn't want to need anyone and feels he needs to be strong and tough for his 4 boys. I have told him, if he's not here, he can't be strong for them. I will make the suggestion and ask the doctor when we see him next. Thank you so much for the information, Randy. 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 I've often wondered about Graeme and his spraying of the blueberries as well... Weir Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme. New Brunswick, Canada Weir homepage: http://personal.nbnet.nb.ca/gweir CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca Re: Re: HELP with HUSBAND We don't have any ties to the military so anthrax and other chemicals are not a concern for us. But my husband does work with explosives and those chemicals get on his skin etc. I don't know of any harm that they cause expect for nitro headaches. Just my 2 cents. It seems that CHARGE is truly a random occurence. We've all talked this through so many times and have never found any one thing that we all have in common. Perhaps birth defects, autism, etc is not due to just one thing but rather a multitude of things in just the right sequence or at just the right time or in just the right combination. I'm getting comfortable with the idea that we may never know. Although I'd love it if we did find out more about the gene itself and then how it occurs. Michele W mom to aubrie 6 yrs CHaRgE and 12 yrs wife to DJ Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 I've often wondered about Graeme and his spraying of the blueberries as well... Weir Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme. New Brunswick, Canada Weir homepage: http://personal.nbnet.nb.ca/gweir CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca Re: Re: HELP with HUSBAND We don't have any ties to the military so anthrax and other chemicals are not a concern for us. But my husband does work with explosives and those chemicals get on his skin etc. I don't know of any harm that they cause expect for nitro headaches. Just my 2 cents. It seems that CHARGE is truly a random occurence. We've all talked this through so many times and have never found any one thing that we all have in common. Perhaps birth defects, autism, etc is not due to just one thing but rather a multitude of things in just the right sequence or at just the right time or in just the right combination. I'm getting comfortable with the idea that we may never know. Although I'd love it if we did find out more about the gene itself and then how it occurs. Michele W mom to aubrie 6 yrs CHaRgE and 12 yrs wife to DJ Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
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 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...
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