Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 I know what you are feeling!!! I now have a 20 year old with charge. They never really knew what she had til she was about 5 years old. Just gave her a mental retardation and that she had birth defects. But anyways.. I had another child with in 1.5 years of having her... He was fine.. But with finding out things later in life..... which i really never knew before.. I got remarried... and consider having another child... But with having a conversation with my doctor and finding out there could be a chance to have this issue again..We decided to be blessed with the children we had... We didnt want to take a chance of having to bring another child into this world.. Even tho they had told me i could have all kind of test and the ultra sound could tell us alot early with the eyes and things.. I didn't know if I could really abort the baby.. If there was something wrong.. These are all things you have to think about..Dont' get be wrong.. My daugher is the joy of my life...But.... You have to be the one to make the choice.. good luck Merri.. Mother of 20 year old Debra.... charge --- missdarbyrose wrote: > hi everyone! > Happy new year!! > My husband and i moved from new hampshire to new > mexico about two > years ago. we have a 5and a half year old daughter > with charge and a > 4month old daughter. we have been blessed many ways > with darby's > health and progress. The doctors gave her no chance > and predicted a > severe delay in development and even brain damage. > Darby has > avoided surgery and has just passed her kindergarten > readiness test. > she just had her eye exam and we did not get good > news. she only has > vision in one eye and it has gotten much worse. a > year ago she was - > 3.75 and is now -8. we have had to get a second op. > before because > like now the presc. does not match what we see her > see. follow? > darby has columbomas in both eyes. I know that > makes it harder to > get and accurate pres. the doc said to see how she > responds to her > new glasses. Have any of you dealt with any of > this? > > On an other note the genetics of charge are > confusing me. I read > megs post and got a little depressed. i had two > misc. in between our > two girls. we have talked about trying for a third > child but are > afraid of winning the charge lottery again. i know > that the risk for > aother issues is there too so we do not know what we > will do. what > if we have another child with more severe > challenges? would that be > fair to the girls? could we handle it? I know that > we have to make > this dec. ourselves but any thoughts from you would > be welcomed. > > > > __________________________________________ Yahoo! DSL – Something to write home about. Just $16.99/mo. or less. dsl.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 I am right there with you on having anther baby issue. Our genetics doctor said they can test the parents and see what the chances are in having anther charge baby. When my daughter was born they didnt think she could see much at all but now she is tracking so well. I hope your daughters sight doesnt get worse and all get better soon. Hugs, Crystal and Eva (8 month charger) > > hi everyone! > Happy new year!! > My husband and i moved from new hampshire to new mexico about two > years ago. we have a 5and a half year old daughter with charge and a > 4month old daughter. we have been blessed many ways with darby's > health and progress. The doctors gave her no chance and predicted a > severe delay in development and even brain damage. Darby has > avoided surgery and has just passed her kindergarten readiness test. > she just had her eye exam and we did not get good news. she only has > vision in one eye and it has gotten much worse. a year ago she was - > 3.75 and is now -8. we have had to get a second op. before because > like now the presc. does not match what we see her see. follow? > darby has columbomas in both eyes. I know that makes it harder to > get and accurate pres. the doc said to see how she responds to her > new glasses. Have any of you dealt with any of this? > > On an other note the genetics of charge are confusing me. I read > megs post and got a little depressed. i had two misc. in between our > two girls. we have talked about trying for a third child but are > afraid of winning the charge lottery again. i know that the risk for > aother issues is there too so we do not know what we will do. what > if we have another child with more severe challenges? would that be > fair to the girls? could we handle it? I know that we have to make > this dec. ourselves but any thoughts from you would be welcomed. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 welcome the genes thing is confusing sometimes its easy just to wait and see withcharge hugs ellen from aus > > I am right there with you on having anther baby issue. Our genetics > doctor said they can test the parents and see what the chances are > in having anther charge baby. > When my daughter was born they didnt think she could see much at all > but now she is tracking so well. I hope your daughters sight doesnt > get worse and all get better soon. > > Hugs, > Crystal and Eva (8 month charger) > > > > > > hi everyone! > > Happy new year!! > > My husband and i moved from new hampshire to new mexico about two > > years ago. we have a 5and a half year old daughter with charge > and a > > 4month old daughter. we have been blessed many ways with darby's > > health and progress. The doctors gave her no chance and predicted > a > > severe delay in development and even brain damage. Darby has > > avoided surgery and has just passed her kindergarten readiness > test. > > she just had her eye exam and we did not get good news. she only > has > > vision in one eye and it has gotten much worse. a year ago she > was - > > 3.75 and is now -8. we have had to get a second op. before > because > > like now the presc. does not match what we see her see. follow? > > darby has columbomas in both eyes. I know that makes it harder to > > get and accurate pres. the doc said to see how she responds to > her > > new glasses. Have any of you dealt with any of this? > > > > On an other note the genetics of charge are confusing me. I read > > megs post and got a little depressed. i had two misc. in between > our > > two girls. we have talked about trying for a third child but are > > afraid of winning the charge lottery again. i know that the risk > for > > aother issues is there too so we do not know what we will do. > what > > if we have another child with more severe challenges? would that > be > > fair to the girls? could we handle it? I know that we have to > make > > this dec. ourselves but any thoughts from you would be welcomed. > > > > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca or > email info@... . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Congratulations on the kindrgarten readiness test! Has Darby been evaluated (recently) by a pediatric ophthalmologist? If not, she should be. Children with coloboma are at incresed risk for retinal detachment. Any change in vision status should be treated as a medical emergency - a partially detached retina can sometimes be repaired, if caught right away. And it is important for her to have visual field testing - if she has colobomas, she has blind spots (possibly very big ones) that teachers need to know about. Lots of kids with colobomas compensate very well - they move their heads, tilt back, figure out ways to see things. That can make it hard for teachers to realize the child realy isn't seeing things on the left or up above a certain height or whatever. They may just think the child isn't paying attention. Knowing the child's specific vuisual field can be helpful. Does she also have some hearing loss? If so, she would qualify for DeafBlind services. Get in touch with the DB project if you haven't already. Here is the New Mexico website for the DB Project: http://cdd.unm.edu/deafblind/ As far as the genetics, please don't be too worried. If you want as much informaiton as possible, you could consider getting the CHARGE DNA test on Darby. It's expensive, but if she has an identifiable mutation, you and your husband could be tested and/or prenatal testing would be possible to rule out CHARGE in another baby. Always remember that a 1-5% recurrence risk is a 98-99% chance it WON'T happen. The likelihood of some other random birth defect is acutally higher than that! Good luck with everything. Meg Meg Hefner MS Genetic Counselor St. Louis MO meg@... > > hi everyone! > Happy new year!! > My husband and i moved from new hampshire to new mexico about two > years ago. we have a 5and a half year old daughter with charge and a > 4month old daughter. we have been blessed many ways with darby's > health and progress. The doctors gave her no chance and predicted a > severe delay in development and even brain damage. Darby has > avoided surgery and has just passed her kindergarten readiness test. > she just had her eye exam and we did not get good news. she only has > vision in one eye and it has gotten much worse. a year ago she was - > 3.75 and is now -8. we have had to get a second op. before because > like now the presc. does not match what we see her see. follow? > darby has columbomas in both eyes. I know that makes it harder to > get and accurate pres. the doc said to see how she responds to her > new glasses. Have any of you dealt with any of this? > > On an other note the genetics of charge are confusing me. I read > megs post and got a little depressed. i had two misc. in between our > two girls. we have talked about trying for a third child but are > afraid of winning the charge lottery again. i know that the risk for > aother issues is there too so we do not know what we will do. what > if we have another child with more severe challenges? would that be > fair to the girls? could we handle it? I know that we have to make > this dec. ourselves but any thoughts from you would be welcomed. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Thakns for the info and kind words meg!! Darby saw a pediatric ophthamologist last week. Dr. todd goldblum. He came highly reccomended. We had been going to childrens in boston formast of her life. As far as visual changes or pain Darby never tells us . I have begged and bribed but she will always say " I'm fine! " . We have to go by my CLOSE observation and med. exams. Darbyhas always tilted her head to see. Her visual,pt and ot people she had through ei said she had great survival instincts. She learned early and on her own how to use all her available senses to the best ability. Most people say the can't tell she is partially blindand deaf. Deaf in left ear and blind in one eye. thanks again > >Reply-To: CHARGE >To: CHARGE >Subject: Re: confusion >Date: Wed, 04 Jan 2006 17:40:14 -0000 > >Congratulations on the kindrgarten readiness test! Has Darby been >evaluated (recently) by a pediatric ophthalmologist? If not, she >should be. Children with coloboma are at incresed risk for retinal >detachment. Any change in vision status should be treated as a >medical emergency - a partially detached retina can sometimes be >repaired, if caught right away. And it is important for her to have >visual field testing - if she has colobomas, she has blind spots >(possibly very big ones) that teachers need to know about. Lots of >kids with colobomas compensate very well - they move their heads, tilt >back, figure out ways to see things. That can make it hard for >teachers to realize the child realy isn't seeing things on the left or >up above a certain height or whatever. They may just think the child >isn't paying attention. Knowing the child's specific vuisual field >can be helpful. > >Does she also have some hearing loss? If so, she would qualify for >DeafBlind services. Get in touch with the DB project if you haven't >already. Here is the New Mexico website for the DB Project: >http://cdd.unm.edu/deafblind/ > >As far as the genetics, please don't be too worried. If you want as >much informaiton as possible, you could consider getting the CHARGE >DNA test on Darby. It's expensive, but if she has an identifiable >mutation, you and your husband could be tested and/or prenatal testing >would be possible to rule out CHARGE in another baby. Always remember >that a 1-5% recurrence risk is a 98-99% chance it WON'T happen. The >likelihood of some other random birth defect is acutally higher than >that! Good luck with everything. >Meg > >Meg Hefner MS >Genetic Counselor >St. Louis MO >meg@... > > > > > > hi everyone! > > Happy new year!! > > My husband and i moved from new hampshire to new mexico about two > > years ago. we have a 5and a half year old daughter with charge and a > > 4month old daughter. we have been blessed many ways with darby's > > health and progress. The doctors gave her no chance and predicted a > > severe delay in development and even brain damage. Darby has > > avoided surgery and has just passed her kindergarten readiness test. > > she just had her eye exam and we did not get good news. she only has > > vision in one eye and it has gotten much worse. a year ago she was - > > 3.75 and is now -8. we have had to get a second op. before because > > like now the presc. does not match what we see her see. follow? > > darby has columbomas in both eyes. I know that makes it harder to > > get and accurate pres. the doc said to see how she responds to her > > new glasses. Have any of you dealt with any of this? > > > > On an other note the genetics of charge are confusing me. I read > > megs post and got a little depressed. i had two misc. in between our > > two girls. we have talked about trying for a third child but are > > afraid of winning the charge lottery again. i know that the risk for > > aother issues is there too so we do not know what we will do. what > > if we have another child with more severe challenges? would that be > > fair to the girls? could we handle it? I know that we have to make > > this dec. ourselves but any thoughts from you would be welcomed. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 i have for years said im fine and one day my paediatrition just started going no your not other wise u wouldnt be coming in here so much im like im k and shed just drag it out by going u sure and pointing to spots and id go yeah um maybe bit now i tell them all the time lol ellen i aus > > Thakns for the info and kind words meg!! Darby saw a pediatric > ophthamologist last week. Dr. todd goldblum. He came highly reccomended. > We had been going to childrens in boston formast of her life. As far as > visual changes or pain Darby never tells us . I have begged and bribed > but she will always say " I'm fine! " . We have to go by my CLOSE > observation > and med. exams. Darbyhas always tilted her head to see. Her visual,pt > and > ot people she had through ei said she had great survival instincts. She > learned early and on her own how to use all her available senses to the > best > ability. Most people say the can't tell she is partially blindand deaf. > Deaf in left ear and blind in one eye. > thanks again > > > > > >Reply-To: CHARGE > >To: CHARGE > >Subject: Re: confusion > >Date: Wed, 04 Jan 2006 17:40:14 -0000 > > > >Congratulations on the kindrgarten readiness test! Has Darby been > >evaluated (recently) by a pediatric ophthalmologist? If not, she > >should be. Children with coloboma are at incresed risk for retinal > >detachment. Any change in vision status should be treated as a > >medical emergency - a partially detached retina can sometimes be > >repaired, if caught right away. And it is important for her to have > >visual field testing - if she has colobomas, she has blind spots > >(possibly very big ones) that teachers need to know about. Lots of > >kids with colobomas compensate very well - they move their heads, tilt > >back, figure out ways to see things. That can make it hard for > >teachers to realize the child realy isn't seeing things on the left or > >up above a certain height or whatever. They may just think the child > >isn't paying attention. Knowing the child's specific vuisual field > >can be helpful. > > > >Does she also have some hearing loss? If so, she would qualify for > >DeafBlind services. Get in touch with the DB project if you haven't > >already. Here is the New Mexico website for the DB Project: > >http://cdd.unm.edu/deafblind/ > > > >As far as the genetics, please don't be too worried. If you want as > >much informaiton as possible, you could consider getting the CHARGE > >DNA test on Darby. It's expensive, but if she has an identifiable > >mutation, you and your husband could be tested and/or prenatal testing > >would be possible to rule out CHARGE in another baby. Always remember > >that a 1-5% recurrence risk is a 98-99% chance it WON'T happen. The > >likelihood of some other random birth defect is acutally higher than > >that! Good luck with everything. > >Meg > > > >Meg Hefner MS > >Genetic Counselor > >St. Louis MO > >meg@... > > > > > > > > > > hi everyone! > > > Happy new year!! > > > My husband and i moved from new hampshire to new mexico about two > > > years ago. we have a 5and a half year old daughter with charge and a > > > 4month old daughter. we have been blessed many ways with darby's > > > health and progress. The doctors gave her no chance and predicted a > > > severe delay in development and even brain damage. Darby has > > > avoided surgery and has just passed her kindergarten readiness test. > > > she just had her eye exam and we did not get good news. she only has > > > vision in one eye and it has gotten much worse. a year ago she was - > > > 3.75 and is now -8. we have had to get a second op. before because > > > like now the presc. does not match what we see her see. follow? > > > darby has columbomas in both eyes. I know that makes it harder to > > > get and accurate pres. the doc said to see how she responds to her > > > new glasses. Have any of you dealt with any of this? > > > > > > On an other note the genetics of charge are confusing me. I read > > > megs post and got a little depressed. i had two misc. in between our > > > two girls. we have talked about trying for a third child but are > > > afraid of winning the charge lottery again. i know that the risk for > > > aother issues is there too so we do not know what we will do. what > > > if we have another child with more severe challenges? would that be > > > fair to the girls? could we handle it? I know that we have to make > > > this dec. ourselves but any thoughts from you would be welcomed. > > > > > > > > > > > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca or > email info@... . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
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