Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 Jan, I understand very well where you are coming from. It just makes good sense to me too! If your child is well, be thankful. If you can be knowledgeable about your medical history that is even a better thing. I provided written documentation to my family and my husbands family when my two girls went through genetic counseling. I suggested that the siblings be tested to determine if they were a carrier or not so they would know about passing the gene on to their children. To my knowledge not one of them had any testing done. I have a brother and sister and my husband has two sisters and a brother. The chances are pretty good that one of them could be a carrier. Ignoring it will not make it go away. You have done all you can do. You should have a clear conscience knowing that you have advised your childs bmother. What she does with that information is not your responsibility. KNOWLEDGE IS POWER!!! Tina W., mother of , almost 18yoa wcf & , 26yoa ncf A Vent My son w/CF is adopted as many of you know. We have an open adoption arrangement with his birthmother so I have been very forthcoming about his medical issues and have suggested strongly that she have her two sons tested (one is oler and another younger than my son but both live with her). One of the sisters has many of the symptoms but refused to be tested because she is " well " most of the time. Neither half brothers to my son have any strong indicators they have CF but then again neither did my son until he had reoccurring nasal polyps. His bgrandmother insists there hasn't been any CF in the family until I mentioned my DS has a rare gene mutation found primarily of those with ish descent. The bell went off and she forgot that her ex husband who fathered all of her children was of ish descent. Anyhow the bmother wanted the information on the Ambry test because the boy's pediatrician have never heard of the test. I sent the website link off several days ago and she called me last night. She decided that she was not going to her either child tested because they are so well and that they don't want the possibility of a preexisting condition to be on their medical records. Perhaps when they are of age to be married they would have the test and genetic counseling but not at the moment. So if my pediatrician felt it was important to my son's health I could have him contact her pediatrician and they can " duke " out. Huh??? She seemed to think it was a matter of finger pointing. I told her it wasn't a matter of finger pointing because it wasn't a question of IF she had a CF mutation it was a question WHICH one it was and that she is a carrier and that her other children may be carriers as well. It doesn't make any difference to my son but she might find it important to know for the other boys. To me it is a win win situation. If the boys have been well all this time- they may only show as carriers. If they do have CF it benefits them to know now and not later when they are sick. Am I looking at this the wrong way? What purpose does it serve to NOT do the testing? I am totally baffled why she is resistant to having the test done. I swear she thinks it is a " stain " on her family personally if they are found to be a carrier. Has anyone else found having CF makes the child and family as tainted? Talk about discriminating against your own children! Sorry all - this just annoyed me to no end. Add that to the fact when I went to sign my son up for traveling football this year they asked about medical conditions. This was the first year I knew enough to have to put down cystic fibrosis. He was just diagnosed this spring at age 7. jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 I think that the bmother is absolutely dumb..it is to their advantage to know. She doesn't have to put a bulletin about it out to all . BUT , for future medical info . We should have all we can . It sure helps with treatments. Bless you .You have done all you can for their family. I do hope your family is doing well & will continue too LOVE & HUGS, grandmomBEV A Vent My son w/CF is adopted as many of you know. We have an open adoption arrangement with his birthmother so I have been very forthcoming about his medical issues and have suggested strongly that she have her two sons tested (one is oler and another younger than my son but both live with her). One of the sisters has many of the symptoms but refused to be tested because she is " well " most of the time. Neither half brothers to my son have any strong indicators they have CF but then again neither did my son until he had reoccurring nasal polyps. His bgrandmother insists there hasn't been any CF in the family until I mentioned my DS has a rare gene mutation found primarily of those with ish descent. The bell went off and she forgot that her ex husband who fathered all of her children was of ish descent. Anyhow the bmother wanted the information on the Ambry test because the boy's pediatrician have never heard of the test. I sent the website link off several days ago and she called me last night. She decided that she was not going to her either child tested because they are so well and that they don't want the possibility of a preexisting condition to be on their medical records. Perhaps when they are of age to be married they would have the test and genetic counseling but not at the moment. So if my pediatrician felt it was important to my son's health I could have him contact her pediatrician and they can " duke " out. Huh??? She seemed to think it was a matter of finger pointing. I told her it wasn't a matter of finger pointing because it wasn't a question of IF she had a CF mutation it was a question WHICH one it was and that she is a carrier and that her other children may be carriers as well. It doesn't make any difference to my son but she might find it important to know for the other boys. To me it is a win win situation. If the boys have been well all this time- they may only show as carriers. If they do have CF it benefits them to know now and not later when they are sick. Am I looking at this the wrong way? What purpose does it serve to NOT do the testing? I am totally baffled why she is resistant to having the test done. I swear she thinks it is a " stain " on her family personally if they are found to be a carrier. Has anyone else found having CF makes the child and family as tainted? Talk about discriminating against your own children! Sorry all - this just annoyed me to no end. Add that to the fact when I went to sign my son up for traveling football this year they asked about medical conditions. This was the first year I knew enough to have to put down cystic fibrosis. He was just diagnosed this spring at age 7. jan ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 Hi, I just wanted to chime in here. I agree with you completely, If it were up to me anyone with a sib of half sib with CF would be automatically tested to see if they were a carrier but it's not our choice. When was dx'd, the CF docs suggested that all of her cousins should probably be sweat tested and carrier tested. One of my sisters has a son who was having a lot of health problems and her oldest daughter had a lot of reflux and respiratory issues when she was small and continuing weight gain probs . All 3 of her kids were sweat tested and cleared with very low scores, but the family doc dissuaded her from having them tested to see if they are carriers, the thinking seemed to be that they could have that testing done when they are ready to have children. My other sister has 2 sons who are both very healthy and large no probs with weight or resp. Because of their health and her hubby's cultural background (he is Native Venezuelan mixed with Spanish and African or Islander of some type-the family doesn't even remember all the nationalities they are) the doc refused to even have them sweat tested and told her that legally, in Florida, he couldn't test them to see if they are carriers (I think that was just because he doesn't think that they are carriers and had nothing to do with the law) But it seems to me that the docs are dissuading people from finding out if they are carriers. I keep thinking that it is because they insurance companies will come down on them for ordering " unnecessary testing " But that is just my opinion and what do I know? Mom of " Cinderella " , 5 with CF A Vent My son w/CF is adopted as many of you know. We have an open adoption arrangement with his birthmother so I have been very forthcoming about his medical issues and have suggested strongly that she have her two sons tested (one is oler and another younger than my son but both live with her). One of the sisters has many of the symptoms but refused to be tested because she is " well " most of the time. Neither half brothers to my son have any strong indicators they have CF but then again neither did my son until he had reoccurring nasal polyps. His bgrandmother insists there hasn't been any CF in the family until I mentioned my DS has a rare gene mutation found primarily of those with ish descent. The bell went off and she forgot that her ex husband who fathered all of her children was of ish descent. Anyhow the bmother wanted the information on the Ambry test because the boy's pediatrician have never heard of the test. I sent the website link off several days ago and she called me last night. She decided that she was not going to her either child tested because they are so well and that they don't want the possibility of a preexisting condition to be on their medical records. Perhaps when they are of age to be married they would have the test and genetic counseling but not at the moment. So if my pediatrician felt it was important to my son's health I could have him contact her pediatrician and they can " duke " out. Huh??? She seemed to think it was a matter of finger pointing. I told her it wasn't a matter of finger pointing because it wasn't a question of IF she had a CF mutation it was a question WHICH one it was and that she is a carrier and that her other children may be carriers as well. It doesn't make any difference to my son but she might find it important to know for the other boys. To me it is a win win situation. If the boys have been well all this time- they may only show as carriers. If they do have CF it benefits them to know now and not later when they are sick. Am I looking at this the wrong way? What purpose does it serve to NOT do the testing? I am totally baffled why she is resistant to having the test done. I swear she thinks it is a " stain " on her family personally if they are found to be a carrier. Has anyone else found having CF makes the child and family as tainted? Talk about discriminating against your own children! Sorry all - this just annoyed me to no end. Add that to the fact when I went to sign my son up for traveling football this year they asked about medical conditions. This was the first year I knew enough to have to put down cystic fibrosis. He was just diagnosed this spring at age 7. jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 I have two sisters, a brother, and brother-in-law who could all be carriers and no one is being tested to see if they are carriers. It is amazing to me. They all think that this is something that happened just to Zach. I have tried to explain that our parents could have had four carriers or only one carrier, but we can't know until they get the blood tests. I also have a niece who is 11 and has never even had a cold. (Do I sound jealous??) She weighs more than me, so I really doubt she could have cf, but she could be a carrier too. My other niece is four and has had constant infections. I have suggested that she should be tested, but since she has not had any digestion problems like Zach, my sister is convinced she doesn't have cf. All I can do is put the information out there and hope for the best. Sara - mommy of Zach 20 months (he is the cutest Eyeore for Halloween) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 I can relate. Since Christian's diagnoses my two sisters have completely forgotten about my family. It is just like you said that they feel it is a stain against our family. Not to mention they say he " looks fine. " Christian's 12 birthday was Wednesday and neither of them did so much as send him a birthday card; heck not even an email, to wish him a happy birthday. He was crushed and says it is because he has CF that they don't like him. See even though he is young he already feels the discrimination from people. I am just so ashamed that it is coming from my own flesh and blood. How do you explain to a child that it doesn't matter when up to 2 years ago they were always there for him? He is the first boy on my side of the family in 21 years; so he was just a bit spoiled by them ... now they don't even acknowledge he exists. Hey what can you do? Tina Mom to Christian 12 yowcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2003 Report Share Posted October 31, 2003 Have you shared this fact with them as how he feels & what he said about him having CF is why they don't see him. That might really shock them........It sure cant keep them away any longer or more.....they deserve to know that & have a huge GUILT TRIP . That is terrible to do to someone. I do hope he got emails , cards from the list though .. LOVE & HUGS, GRDMBEV Re: A Vent I can relate. Since Christian's diagnoses my two sisters have completely forgotten about my family. It is just like you said that they feel it is a stain against our family. Not to mention they say he " looks fine. " Christian's 12 birthday was Wednesday and neither of them did so much as send him a birthday card; heck not even an email, to wish him a happy birthday. He was crushed and says it is because he has CF that they don't like him. See even though he is young he already feels the discrimination from people. I am just so ashamed that it is coming from my own flesh and blood. How do you explain to a child that it doesn't matter when up to 2 years ago they were always there for him? He is the first boy on my side of the family in 21 years; so he was just a bit spoiled by them .... now they don't even acknowledge he exists. Hey what can you do? Tina Mom to Christian 12 yowcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2003 Report Share Posted October 31, 2003 Sometimes people who react this badly don't want to let the wolf in the house so to speak. ( the wolf being any disease/hardship) We on the other hand have had to not only let the wolf in, but to let him live with us. Sometimes the wolf sleeps, but sometimes he raises up and bites. I can honestly say that I wouldn't want to even open the door to peek at the wolf if I didn't have too. Dawn mom of 4, 7 and under, the youngest wcf A Vent My son w/CF is adopted as many of you know. We have an open adoption arrangement with his birthmother so I have been very forthcoming about his medical issues and have suggested strongly that she have her two sons tested (one is oler and another younger than my son but both live with her). One of the sisters has many of the symptoms but refused to be tested because she is " well " most of the time. Neither half brothers to my son have any strong indicators they have CF but then again neither did my son until he had reoccurring nasal polyps. His bgrandmother insists there hasn't been any CF in the family until I mentioned my DS has a rare gene mutation found primarily of those with ish descent. The bell went off and she forgot that her ex husband who fathered all of her children was of ish descent. Anyhow the bmother wanted the information on the Ambry test because the boy's pediatrician have never heard of the test. I sent the website link off several days ago and she called me last night. She decided that she was not going to her either child tested because they are so well and that they don't want the possibility of a preexisting condition to be on their medical records. Perhaps when they are of age to be married they would have the test and genetic counseling but not at the moment. So if my pediatrician felt it was important to my son's health I could have him contact her pediatrician and they can " duke " out. Huh??? She seemed to think it was a matter of finger pointing. I told her it wasn't a matter of finger pointing because it wasn't a question of IF she had a CF mutation it was a question WHICH one it was and that she is a carrier and that her other children may be carriers as well. It doesn't make any difference to my son but she might find it important to know for the other boys. To me it is a win win situation. If the boys have been well all this time- they may only show as carriers. If they do have CF it benefits them to know now and not later when they are sick. Am I looking at this the wrong way? What purpose does it serve to NOT do the testing? I am totally baffled why she is resistant to having the test done. I swear she thinks it is a " stain " on her family personally if they are found to be a carrier. Has anyone else found having CF makes the child and family as tainted? Talk about discriminating against your own children! Sorry all - this just annoyed me to no end. Add that to the fact when I went to sign my son up for traveling football this year they asked about medical conditions. This was the first year I knew enough to have to put down cystic fibrosis. He was just diagnosed this spring at age 7. jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2003 Report Share Posted October 31, 2003 Tina; the only thing that prevented that in my family is that on both sides there were so many wcf, that denial was highly unlikely! This may be sad, but forced us as a clan to become educated to pieces. You wrote a really good post, and I am so sorry that this isolation and stigmatisation has happened in your family, n Rojas Re: A Vent I can relate. Since Christian's diagnoses my two sisters have completely forgotten about my family. It is just like you said that they feel it is a stain against our family. Not to mention they say he " looks fine. " Christian's 12 birthday was Wednesday and neither of them did so much as send him a birthday card; heck not even an email, to wish him a happy birthday. He was crushed and says it is because he has CF that they don't like him. See even though he is young he already feels the discrimination from people. I am just so ashamed that it is coming from my own flesh and blood. How do you explain to a child that it doesn't matter when up to 2 years ago they were always there for him? He is the first boy on my side of the family in 21 years; so he was just a bit spoiled by them ... now they don't even acknowledge he exists. Hey what can you do? Tina Mom to Christian 12 yowcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2003 Report Share Posted November 2, 2003 i know how you feel. My cousins little girl has a lot of digestive problems and lung infections. She has never gotten better. But she refuses to have her checked for CF. What's the deal, I wish I would've known about cf when my baby was sick, that could've saved her a lot of damage. It's like they think it couldn't happen to them. So aggrevating. I just pray for the little girl. Mother of three daughters 4 yo w/CF - Kenedy, 5 yo no CF - and 6 yo w/CF - Kaylee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2003 Report Share Posted November 2, 2003 In a message dated 11/2/2003 12:59:15 PM Central Standard Time, sandrakkm@... writes: You have 3 girls too!! and our oldest and youngest have CF! How old were your girls when they were diagnosed? Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 My oldest was diagnosed at 4 months and my youngest was diagnosed before birth. sandra Mother of three daughters 4 yo w/CF - Kenedy, 5 yo no CF - and 6 yo w/CF - Kaylee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 , given the situation, that was a remarkably re strained " vent! " Love to all of you, n Rojas, wcf, mom of 3 adults (very), youngest wcf, too Re: A Vent > My oldest was diagnosed at 4 months and my youngest was diagnosed before > birth. > > sandra > > Mother of three daughters 4 yo w/CF - Kenedy, 5 yo no CF - and 6 yo > w/CF - Kaylee > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2003 Report Share Posted November 5, 2003 In a message dated 11/4/2003 5:58:25 PM Central Standard Time, sandrakkm@... writes: My oldest was diagnosed at 4 months and my youngest was diagnosed before birth. sandra Mother of three daughters 4 yo w/CF - Kenedy, 5 yo no CF - and 6 yo w/CF - Kaylee Mine were diagnosed at age 6 and 1. My oldest had polyps in her nose and I really feel that if it wasn't for that we still would know they have CF. Deb A Quote Link to comment Share on other sites More sharing options...
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