Guest guest Posted October 21, 2005 Report Share Posted October 21, 2005 um i think if you were looking at percentigies with charge rates one in i think every ten kids die with charge i could be wrong but i think thats it its rare compared to something like muscular disprophy and cnacer and the like if anyone outthere knows the percentige the exact one please correct me hugs ellen > > Thanks Kim for your encouraging email and for validating my anger! > It's been a bad day with news from the audiologist. His hearing is > worse than the last test done a month ago, which is very confusing. > We are meeting again tomorrow with the ENT involved as well. I > thought we had been really blessed with only moderate hearing loss > but now one ear is more in the severe category and we are not sure > about the other yet. > > Max has not been having as many fussy periods....but they are > considering putting him on a low amount of sedation all the time > until his lungs improve, because the pulmonologist thinks what > happens is that he gets a little agitated (like a baby does), his > carbon dioxide level increases because he is breathing different and > then he gets fussier and fussier. Who knows!!! > > His #1 issue right now actually is due to his prematurity...really > poor lungs. It's amazing that on top of all the CHARGE issues, he > is still battling his early arrival. The docs are not sure what to > do...they are considering him getting a trach, but he would need his > heart surgery before the trach and the cardiologist wants to hold > off until he is bigger. So we are in a " wait and see " period right > now...hmmm. They are " considering " sending him home in a month or > so, but they are quite concerned about doing that because he is > fairly fragile due to his weak lungs. He breathes SUPER fast all > the time. > > The next two weeks are pretty important in determining what to do. > If he grows in weight and length, they will feel pretty > good...however if he does not, we will be heading towards a trach. I > wish we had the perfect solution, but I am learning that while > doctors are amazing, sometimes they don't know everything either!!! > But I will push and push and push them, that's for sure! > > Thanks everyone for all of your support and help! > > Amy > > > > > > > > Are there any studies on the long term for people with CHARGE? > I know this is > > > not an easy issue, but do CHARGErs tend to live shorter > lives...or once they > > > are through the significant medical stage, is mortality no > longer as much of a > > > factor? > > > > > > I am very distraught right now about my son, who still is in the > hospital > > > after four months. He isn't facing anything " life threatening " > right now > > > thankfully but I am just looking into the future and questioning > what is ahead > > > of us. I am really angry with CHARGE (if you can be angry at a > disorder!!!) > > > right now...no child deserves this. > > > > > > Additionally, what about developmental delays in the long term? > Is the > > > spectrum as wide as the literature says? I know everyone is > different but I > > > want to be fairly realistic. > > > > > > Any input would be greatly appreciated! > > > > > > Amy (mom to Max, 4 months old) > > > > > > > > > --------------------------------- > > > Yahoo! FareChase - Search multiple travel sites in one click. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2005 Report Share Posted October 21, 2005 Amy, You are right, the weak lungs from prematurity does give him one other big hurdle to handle. If I recall he has a g-tube so he is not aspirating, is that right? And what about reflux? Those things can complicate the respiratory system A LOT, which he certainly does not need. I am sorry about the hearing test. Knowing how much they can see and hear " exactly " can take a long time, but what is important to know right now is even with the huge conductive losses and the nerve loss, there is still so much technology that can help more than you might think. As his medical issues stabilize the focus will shift more and more to these areas. Even now at age 9, we are looking at technology that could benefit Dylan's hearing and since he was an infant we have thought he had zero hearing. And I think most of us will tell you that considering what our kids can't see, can't hear, and so on, what they do is INCREDIBLE. On paper it seems as if Dylan should not see much of anything, but when you watch him you would never guess his vision is so poor. It is all he's ever known and he maximizes the use of it. I tell you these things not to minimize your anger, or to say there is nothing to worry about, because he is your child, and that means there is everything to worry about, BUT I do want you to hold deep inside of yourself that little piece of hope that says his life can be awesome in spite of CHARGE. I hope today is better. Kim > Thanks Kim for your encouraging email and for validating my anger! > It's been a bad day with news from the audiologist. His hearing is > worse than the last test done a month ago, which is very confusing. > We are meeting again tomorrow with the ENT involved as well. I > thought we had been really blessed with only moderate hearing loss > but now one ear is more in the severe category and we are not sure > about the other yet. > > Max has not been having as many fussy periods....but they are > considering putting him on a low amount of sedation all the time > until his lungs improve, because the pulmonologist thinks what > happens is that he gets a little agitated (like a baby does), his > carbon dioxide level increases because he is breathing different and > then he gets fussier and fussier. Who knows!!! > > His #1 issue right now actually is due to his prematurity...really > poor lungs. It's amazing that on top of all the CHARGE issues, he > is still battling his early arrival. The docs are not sure what to > do...they are considering him getting a trach, but he would need his > heart surgery before the trach and the cardiologist wants to hold > off until he is bigger. So we are in a " wait and see " period right > now...hmmm. They are " considering " sending him home in a month or > so, but they are quite concerned about doing that because he is > fairly fragile due to his weak lungs. He breathes SUPER fast all > the time. > > The next two weeks are pretty important in determining what to do. > If he grows in weight and length, they will feel pretty > good...however if he does not, we will be heading towards a trach. I > wish we had the perfect solution, but I am learning that while > doctors are amazing, sometimes they don't know everything either!!! > But I will push and push and push them, that's for sure! > > Thanks everyone for all of your support and help! > > Amy > > > >> >>> Are there any studies on the long term for people with CHARGE? > I know this is >>> not an easy issue, but do CHARGErs tend to live shorter > lives...or once they >>> are through the significant medical stage, is mortality no > longer as much of a >>> factor? >>> >>> I am very distraught right now about my son, who still is in the > hospital >>> after four months. He isn't facing anything " life threatening " > right now >>> thankfully but I am just looking into the future and questioning > what is ahead >>> of us. I am really angry with CHARGE (if you can be angry at a > disorder!!!) >>> right now...no child deserves this. >>> >>> Additionally, what about developmental delays in the long term? > Is the >>> spectrum as wide as the literature says? I know everyone is > different but I >>> want to be fairly realistic. >>> >>> Any input would be greatly appreciated! >>> >>> Amy (mom to Max, 4 months old) >>> >>> >>> --------------------------------- >>> Yahoo! FareChase - Search multiple travel sites in one click. >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2005 Report Share Posted October 21, 2005 Amy- I, too, asked questions over and over and over when our therapists would come to see Aubrie. They supported me as much or more than her in those early days. I'd cry thru the visits and ask repeatedly about her future. They listened and answered over and over. I found some ways to reconcile my anger. Maybe they'll help you too. It really p***** me off that I had my own biological child who was a part of a minority group to which I didn't belong (disability etc), for whom I had to learn a new language (sign), etc. And to top it off, she resembled her CHARGE peers more than she resembled our family! Finally, I decided she had 3 parents. Genetically, she has material from me and my husband, but she also has genetic material from CHARGE. So it's like a vine crept in and intertwined with her branch of our family tree. It explains why her CHARGE peers are so much like siblings even though she shares a lot with her biological brother too. And I'm good with this visualization because I've met the CHARGE family and they are in-laws I'm happy to have in my life. As far as the anger that our kids have to go thru so much -- I don't know when or how that subsided. It still makes me angry and frustrated, but I've accepted it somewhere along the way. Maybe only in the past year or so. Now that Aubrie's older and in school, we try to fit all of our dr appts on school holidays. That means we are off to the dr when other kids are enjoying fun days at home. With my son, school holidays were spent at Chuck E Cheese or the park. For Aubrie, they are spent at the dr. And appts take up much of the summer too. It's aggravating. In fact, she has to have some speech testing done. It's scheduled for Veteran's Day. But our library is having a big Harry Potter day. And our good friends are the librarians so she knows all about. She is being Ron Weasley (Harry's best friend) for Halloween. Her brother is going to the Harry Potter event. She's gonna be so disappointed to miss it. But we can't miss school for this test. And the Harry Potter event is really for kids older than her. Because our friends are organizing it, they were going to make a special effort to include her in the beginning part -- getting accepted to Hogwarts, getting sorted by the Sorting Hat, getting a wand, but then she was gonna go home with me when they began the Hogwarts classes which are geared for upper elementary and jr high. So it's really not worth having to miss a day of school for -- but it's aggravating that she is constantly faced with these choices. So I acknowlege and understand your anger. In fact, we probably have all shared it at times. But I can tell you that you will find a way to come to terms with it. Just know that and give yourself time to go thru the process -- whatever that process is for you. Michele Westmaas mom to Aubrie 7 yrs CHaRgE and 13 yrs, wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2005 Report Share Posted October 21, 2005 And Meg, can I add that there are kids who do have delays that are life long. However, it does not mean that they do not continue to learn in their own ways and own times ( Longer growing season!). pam > ---------- > From: CHARGE on behalf of Meg Hefner > Reply To: CHARGE > Sent: Friday, October 21, 2005 9:11 AM > To: charge > Subject: Re: long term > > Amy, > I wanted to add a couple of things to the discussion about > long-trem outcome for people with CHARGE. I think it is > obvious from the participation on the list from many > individuals with CHARGE that the outcome can be very good - > both in terms of health and in terms of intelligence. > > CHARGE is a very complex syndrome that can affect any part > of the baby. As you well know, many babies with CHARGE are > often very sick for a long time. And we can't fix > everything. Years ago, most babies with CHARGE died, either > because we weren't very good at managing and fixing the > problems or because it was assumed they would have severe > mental retardation and were not treated aggresively. Now we > know better than that and we're better at treating the > comlicaitons. However, even now, problaby between 1 in 5 > and 1 in 10 (10-20%) babies with CHARGE do not make it to > age two. Sometimes the mecial issues are still > overwhelming. > > Once you get beyond the early, life-threatening medical > issues, the survival is pretty good. I believe people with > CHARGE remain " medically fragile " for their entire lives. > How long will those lives be? It's a little hard to say. > What I can tell you is that I know many people with CHARGE > who are doing well in their 40's and 50's. The one family I > know with 6 people with CHARGE in 3 generations lived normal > life spans (the grandmother died in her 80's). > > We're trying to learn more about the natural history so we > can tell families what to expect and so we can help find and > manage complications that come up later in life. You will > ahve teh benefit of knowledge from many other the older > people on the list! > > Finally, on how well people with CHARGE do developmenatlly: > In my job as a genetic cousnelor, I tell parents to assume > normal intelligence until proven othewise. And that " proof " > cannot happen before AT LEAST school age in a child who has > sensory deficits (hearing loss and/or vision loss) and has > been in the hospital a lot. Much of the delay is true > delay, with catch up happening later. > > Meg > Meg Hefner meg@... > Genetic counselor St. Loius > > Meg Hefner, M.S. > Genetic Counselor > St. Louis, MO > hefnerma@... meg@... > > > 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 October 21, 2005 Report Share Posted October 21, 2005 Amy, Aidan was also premature, by 10 weeks (wieghted only 3 lbs!) and spent his first 4 months of life at Intensive Care Unit.. he's only 2 months he's home now! So, unfortunately, I know what are you going through.. as having a VERY premature baby is not frightening enough, here comes CHARGE!!! What's been the crime committed?? Gimme a break!!!!!!!! Give HIM a break!!!!!!!!!!!!!!!! Today is the day that I look at Aidan and i still cannot believe all this is ACTUALLY happening.. I guess that after the ANGER phase, comes the DENIAL.. doesn't it? Ah, sure... Well, Im not going to get through all the bits and pieces that Aidan, my Little Brave Warrior, had to undergo 'cause what (Thank God!) is " past " for me, it's " present " for you.. but the moral is that, come Hell or high water, we'll get through this storm..and whatever it takes! 'Cause our babies they dont deserve nothing less.. We just have to keep up WITH THEM in their daily strife.. and that's A LOT to say!! I also share with you one of my greatest concern about Aidan, regarding his long term development.. so many issues and no final outcome! You are just told the " list " of problems and there you are left, hanging in Limbo to see what turns out in the end.. What material have your nerves be made of to bear all this througout the years??? Oh well, I guess the answer is: Mummy's stuff... So there we go again.. but not on our own.. All the best wishes and GOOD luck from Ireland for your Little Warrior, Brave Max!!! Pat, mum to Aidan (CHARGE- 6 months old, 10 wks prem) > >Reply-To: CHARGE >To: CHARGE >Subject: Re: Long Term >Date: Fri, 21 Oct 2005 07:45:22 -0000 > >Thanks Kim for your encouraging email and for validating my anger! >It's been a bad day with news from the audiologist. His hearing is >worse than the last test done a month ago, which is very confusing. >We are meeting again tomorrow with the ENT involved as well. I >thought we had been really blessed with only moderate hearing loss >but now one ear is more in the severe category and we are not sure >about the other yet. > >Max has not been having as many fussy periods....but they are >considering putting him on a low amount of sedation all the time >until his lungs improve, because the pulmonologist thinks what >happens is that he gets a little agitated (like a baby does), his >carbon dioxide level increases because he is breathing different and >then he gets fussier and fussier. Who knows!!! > >His #1 issue right now actually is due to his prematurity...really >poor lungs. It's amazing that on top of all the CHARGE issues, he >is still battling his early arrival. The docs are not sure what to >do...they are considering him getting a trach, but he would need his >heart surgery before the trach and the cardiologist wants to hold >off until he is bigger. So we are in a " wait and see " period right >now...hmmm. They are " considering " sending him home in a month or >so, but they are quite concerned about doing that because he is >fairly fragile due to his weak lungs. He breathes SUPER fast all >the time. > >The next two weeks are pretty important in determining what to do. >If he grows in weight and length, they will feel pretty >good...however if he does not, we will be heading towards a trach. I >wish we had the perfect solution, but I am learning that while >doctors are amazing, sometimes they don't know everything either!!! >But I will push and push and push them, that's for sure! > >Thanks everyone for all of your support and help! > >Amy > > _________________________________________________________________ Dale rienda suelta a tu tiempo libre. Encuentra mil ideas para exprimir tu ocio con MSN Entretenimiento. http://entretenimiento.msn.es/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2005 Report Share Posted October 21, 2005 Amy and Pat- Two books were really cathartic and helpful for me in those first years. One is Changed by a Child by Barbara Gill. It's a collection of essays by parents of children with disabilities. It's categorized into each of the life phases. It brought lots of tears, but they were healthy ones. The other is When (or Why) Bad Things Happen to Good People. I can't recall the exact title. It's by a rabbi. It's message is non-denominational and did a lot to help me. Maybe you would also find some strength and release from them. I'm sharing in your anger today at the world in general. This little friend of ours struggled for 15 years with a degenerative syndrome only to suffer even more in the last years and then leave his family with a big gaping hole. How does that make sense? Shortly before Aubrie was born, a friend's kindergartner died in a farm accident. I wondered who had it better: me who thought my life was over and all I could look forward to was struggling thru all this stuff with Aubrie or her who had such immense grief but could get on with her days. Finally, I am sure I've got the better deal. Yes, my grief goes on each day, but so does hers. But I get the joys of my child every day and she only has memories. So hug your babies whether their hospitalized or home and be thankful for the small blessings that are thrown in with all the junk. In time, those blessings will outweigh the junk. Hugs to you - Michele Westmaas mom to Aubrie 7 yrs CHaRgE and 13 yrs, wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2005 Report Share Posted October 21, 2005 I found Changed by a Child a really useful book too. Plus the " Welcome to Holland " piece of writing - you've probably seen that by now - but if not, put that into google and you'll find it. Michele hit the nail on the head when she said in time the blessings outweigh the junk...my son is just 2 and I am starting to see the blessings more and more! > > Amy and Pat- > Two books were really cathartic and helpful for me in those first years. > One is Changed by a Child by Barbara Gill. It's a collection of essays by > parents of children with disabilities. It's categorized into each of the > life phases. It brought lots of tears, but they were healthy ones. The other > is When (or Why) Bad Things Happen to Good People. I can't recall the exact > title. It's by a rabbi. It's message is non-denominational and did a lot to > help me. > > Maybe you would also find some strength and release from them. > > I'm sharing in your anger today at the world in general. This little > friend of ours struggled for 15 years with a degenerative syndrome only to > suffer even more in the last years and then leave his family with a big > gaping hole. How does that make sense? > > Shortly before Aubrie was born, a friend's kindergartner died in a farm > accident. I wondered who had it better: me who thought my life was over and > all I could look forward to was struggling thru all this stuff with Aubrie > or her who had such immense grief but could get on with her days. Finally, I > am sure I've got the better deal. Yes, my grief goes on each day, but so > does hers. But I get the joys of my child every day and she only has > memories. > > So hug your babies whether their hospitalized or home and be thankful for > the small blessings that are thrown in with all the junk. In time, those > blessings will outweigh the junk. > > Hugs to you - > > > > Michele Westmaas > mom to Aubrie 7 yrs CHaRgE and 13 yrs, wife to DJ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2005 Report Share Posted October 22, 2005 Michele, Amen with the " hug your babies " . pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2005 Report Share Posted October 22, 2005 good pints here and i agree with them all ellen from aus > > And Meg, can I add that there are kids who do have delays that are life > long. However, it does not mean that they do not continue to learn in their > own ways and own times ( Longer growing season!). > > pam > > > ---------- > > From: CHARGE on behalf of Meg Hefner > > Reply To: CHARGE > > Sent: Friday, October 21, 2005 9:11 AM > > To: charge > > Subject: Re: long term > > > > Amy, > > I wanted to add a couple of things to the discussion about > > long-trem outcome for people with CHARGE. I think it is > > obvious from the participation on the list from many > > individuals with CHARGE that the outcome can be very good - > > both in terms of health and in terms of intelligence. > > > > CHARGE is a very complex syndrome that can affect any part > > of the baby. As you well know, many babies with CHARGE are > > often very sick for a long time. And we can't fix > > everything. Years ago, most babies with CHARGE died, either > > because we weren't very good at managing and fixing the > > problems or because it was assumed they would have severe > > mental retardation and were not treated aggresively. Now we > > know better than that and we're better at treating the > > comlicaitons. However, even now, problaby between 1 in 5 > > and 1 in 10 (10-20%) babies with CHARGE do not make it to > > age two. Sometimes the mecial issues are still > > overwhelming. > > > > Once you get beyond the early, life-threatening medical > > issues, the survival is pretty good. I believe people with > > CHARGE remain " medically fragile " for their entire lives. > > How long will those lives be? It's a little hard to say. > > What I can tell you is that I know many people with CHARGE > > who are doing well in their 40's and 50's. The one family I > > know with 6 people with CHARGE in 3 generations lived normal > > life spans (the grandmother died in her 80's). > > > > We're trying to learn more about the natural history so we > > can tell families what to expect and so we can help find and > > manage complications that come up later in life. You will > > ahve teh benefit of knowledge from many other the older > > people on the list! > > > > Finally, on how well people with CHARGE do developmenatlly: > > In my job as a genetic cousnelor, I tell parents to assume > > normal intelligence until proven othewise. And that " proof " > > cannot happen before AT LEAST school age in a child who has > > sensory deficits (hearing loss and/or vision loss) and has > > been in the hospital a lot. Much of the delay is true > > delay, with catch up happening later. > > > > Meg > > Meg Hefner meg@... > > Genetic counselor St. Loius > > > > Meg Hefner, M.S. > > Genetic Counselor > > St. Louis, MO > > hefnerma@... meg@... > > > > > > 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 <http://www.chargesyndrome.org> or by calling > 1-. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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