Guest guest Posted August 2, 2003 Report Share Posted August 2, 2003 quint!!! i have been to dr frohman before!! he is a great doctor. i think i have seen just about everyone in ny and nj. carrots >From: sarcdog@... >Reply-To: Neurosarcoidosis >To: Neurosarcoidosis >Subject: Re: new member >Date: Sat, 2 Aug 2003 15:47:59 -0400 (EDT) > >Liz dear here is the eye doc. Dr. Larry Frohman 90 Bergen st >suite 6162 Newark, New Jersey. He is good with sarc eye >problems......Quint > _________________________________________________________________ Add photos to your e-mail with MSN 8. Get 2 months FREE*. http://join.msn.com/?page=features/featuredemail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2003 Report Share Posted August 13, 2003 Hi , welcome to the group... You don't have to have Neurosarcoidosis to join the group you are welcome to be a part.... feel free to ask questions, or join in on converstations.... Let us know what you would like to know... or just be a part of a loving supportive family..... Again come on in and make your self at home...Tell us if you need anything.... Big Hug, -- new member Hello to all. i am new to this group however not new to sarcoidosis. I was diagnosed in 1998. At that time it was in my liver and spleen. Now it is in my lungs and kidneys also. I do not have neurosarcoid, but was still interested in joining this group for all the information I could find. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2003 Report Share Posted August 13, 2003 welcome !....I was diagnosed with systemic sarcoidosis last April and neurosarcoidosis last month. This is a wonderful and supportive group. Sincerely, Stacie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2003 Report Share Posted August 14, 2003 Welcome , You have found information and most of all support in this wonderful group! Nimeth wrote: Hello to all. i am new to this group however not new to sarcoidosis. I was diagnosed in 1998. At that time it was in my liver and spleen. Now it is in my lungs and kidneys also. I do not have neurosarcoid, but was still interested in joining this group for all the information I could find. Thank you. ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Live Group Chat:- Mondays & Fridays 10pm EST USA http://www.elderwyn.com/neurosarcoidosis/chat.php Message Archives and Digest Attachment Pictures:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:- Add a website URL you have found useful. http://groups.yahoo.com/group/Neurosarcoidosis/links Personal Complaints or problems:- Please email the moderators mailto:Neurosarcoidosis-owner Subscription Details:- 1) Individual email - means that every email sent to the list you receive. 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/join To subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you! ~~~~ *** ~~~ *** ~~~ *** ~~~~ Come stand by my side where I am going, Take my hand if I should stumble and fall, It's the strength and love that you share, That gives me what I need most of all. - Hoyt Axton ~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2003 Report Share Posted August 15, 2003 Welcome , This is a great group and YES you will find an abundance of information here. Glad that you have joined us Ann new member Hello to all. i am new to this group however not new to sarcoidosis. I was diagnosed in 1998. At that time it was in my liver and spleen. Now it is in my lungs and kidneys also. I do not have neurosarcoid, but was still interested in joining this group for all the information I could find. Thank you.~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2003 Report Share Posted October 13, 2003 Hey, Brock! Welcome to our family. We're more than 200 strong, all over the world. Sorry you had to get the sarc monster in order to meet us. Rose from Indiana New Member Hello Everyone, My name is Brock and i am new to this support group. I have been dealing and battling medical problems for two years. I have sarc in the lungs and in my pituitary gland. I look forward to talking with people. Brock~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Welcome. Glad you are able to join us on-line. Kim Mom to Dylan 7 CHaRGe, Kayla 13, Tyler 15 > Hello everyone! > > I am the parent 3 girls, Jordyn (8 year old W/CHARGE) (4) and > Gracie(1). We have been aware of this great list service but did > not have the access to a computer to participate. We now have a > home computer, so we can communicate with others that have and are > in the same situation as us. My daughter was diagnosed at the age > of 3 weeks with CHARGE. We have been fortunate in terms of help and > support. Although we live in a northern B.C. community, we have > meet with many professionals, specialists and have also trained many > individuals on the fine aspects of CHARGE and our daughter's special > needs. We have only contacted a few over the past 8 years. I hope > to share much more information and to meet other CHARGE families. > > Sincerely > > Jocelyn Robbins > > > 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 January 7, 2004 Report Share Posted January 7, 2004 Jocelyn, GREAT to hear from you! Nice to see you on the list. Weir Mom to Kennedy 5 1/2 yr old with CHARGE, 14, 12 and wife to Graeme. New Brunswick, Canada Weir homepage: http://personal.nbnet.nb.ca/gweir CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca New member Hello everyone! I am the parent 3 girls, Jordyn (8 year old W/CHARGE) (4) and Gracie(1). We have been aware of this great list service but did not have the access to a computer to participate. We now have a home computer, so we can communicate with others that have and are in the same situation as us. My daughter was diagnosed at the age of 3 weeks with CHARGE. We have been fortunate in terms of help and support. Although we live in a northern B.C. community, we have meet with many professionals, specialists and have also trained many individuals on the fine aspects of CHARGE and our daughter's special needs. We have only contacted a few over the past 8 years. I hope to share much more information and to meet other CHARGE families. Sincerely Jocelyn Robbins 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 March 7, 2004 Report Share Posted March 7, 2004 Hello , welcome to the list! I am 25 years old and have CHARGE. There are several CHARGErs (CHARGErs is the affectionat name for those of us with CHARGE) on this list. There is also a couple CHARGErs who are a bit older then me. We have lots of CHARGErs with many varying abilities and talants so feel free to ask us anything or ask the parents of the younger families. Anyways there are tons of awsome ppl on this list, dont be shy, ask anything! Somoene here will probably have an answere for you. If no answere, at least they are terrific listeners! BTW, where are you from? Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2004 Report Share Posted March 7, 2004 Kristy, All of you have been through so much already. Kaleb is a lucky child to have you as his mother. Although your husband will handle life differently than you, but together the two of you can be strong to help Kaleb along. Welcome. Bonnie, Mom to a 21, Patty CHARGE 19, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2004 Report Share Posted March 7, 2004 Kristy, Welcome. I teach special education also. I too was blessed to stay home with until she entered a regular first grade. Back then we were all alone with no list and no other famililes with special needs children. Our cHARGEr is now 19 1/2 years old and in college. She is hearing impaired, had a trach until 3 1/2, open heart surgery at 6 and 27 other surgeries. She still is medically fragile but doing well. Her whole story takes pages to tell . All CHARGE kids are different but this list is great. Blessings and Hugs, Lynn Ohio Mom to Tom 24, 19 1/2 cHARGE, and wife to Doug New Member > Hello, > My name is Kristy, and I have a 16 month old that was diagnosed with CHARGE > Syndrome when he was in the NICU, 12 months ago (he's been home for ten > months now...). He's doing wonderfully, I just wanted to basically > introduce ourselves. My son's name is Kaleb, he currently has a trach, > j-tube and is on oxygen. His coloboma is in his optical nerve. He was born > premature, and a valve in his heart didn't close, but it was fixed, he has > an apnea monitor for when he's sleeping at night, along with his > pulsoximeter. He was also born w/TEF (Tracheal Esophegeal Fistula) which > was repaired the day he was born...He also has Reflux, and GERD... His right > nostril(just a warning i'm a horrible speller) (atresia,inside) is > narrower... his left ear is the charastic square and set low. His genitalia > is smaller than normal. His hearing is still in the process of being > tested, right now a sedated test is pending. His vision is being monitored > by a reputable doctor, whom was very positive about prospects. He had an > MRI done when he was in the NICU, and they reported to us that his brain > looked normal. > He's an amazing little boy, who's been through so much, he's strong and > bright. He's our little angel! My intent also is to connect with other > parents and such that can give advice and a group that I can relate to, and > hopefully to better understand and to help my son. > I found Yahoo! groups through a friend, a fellow NF survivor. NF, > Necrotizing Faciitis: " the flesh eating desease " . And was hopeing there was > a group for CHARGE! So we're extatic that we're able to connect and to > relate to others. > Right now Kaleb is learning to sit independantly, he has a prone stander as > well, helping to build great bones! He has a walker (the baby kind), that > he gets around in. He's very active and loves to dance and move around. > We live in land, and now that the weather is getting to be more > spring-like, Kaleb's been itching to get outside. He loves the outdoors (as > long as he's wearing sun-glasses)! And he loves to travel. Last summer we > went camping (in an RV) in Virginia, for a family reunion, and I think if he > could speak/talk he would say that's been his favorite thing! > Kaleb is learning sign-language. He's now signing " more " independantly, > we're working on finished and having him choose (relating the sign w/the > item) out of his communication box. > I have a background in special education, and all along i've had numerous > people tell me that God paired us up for a reason... he really couldn't have > better parents. My husband at times has a hard time dealing with > Kaleb's special needs, and is unable to relate to his fellow co-workers > about their children. I've reasured him however that there are plenty of > things he has to boast about, and he's getting better! He knows how special > Kaleb is, and how wonderfully he's doing. Kaleb is definately a daddy's > boy. > With my special education background I feel privledge to be able to stay > home with Kaleb, for early intervention and to maximize his learning > potential. When we first brought Kaleb home he was more fragile and > medically sensative. Now he's much more the toddler, who loves to > rough-house and to stay active. > We live in land, we haven't ventured as much as joining support groups > that are local, but I thought this would be a great start for our family. > Thank you for listening (or should I say " reading " ) and I look forward to > sharing w/you'all... > Gob Bless & keep you safe, > ~ Kristy > > _________________________________________________________________ > Find things fast with the new MSN Toolbar - includes FREE pop-up blocking! > http://clk.atdmt.com/AVE/go/onm00200414ave/direct/01/ > > > > 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 March 8, 2004 Report Share Posted March 8, 2004 Kristy- Just wanted to welcome you to our CHARGE family! My daughter, Aubrie, is 6 yrs old. She did not have respiratory issues, but did have a Gtube until about age 1.5 yrs. She has optic nerve coloboma in one eye but the other has near normal vision. She has mild-mod loss in one ear and mod-sev in the other. Functionally, she has pretty good hearing with her aids. She has some fine and gross motor delays, speech articulation problems, and balance issues, but she gets around quite well (a little slower than her peers), speaks well enough to manage with people who know her, eats orally, and is learning to read! She's in regular kindergarten with a 1:1 aide. I also stayed home with her until she was in school. Luckily, she went to school at age 3 so that freed me up. Boy, did I need it! As much as I feel fortunate to have a work schedule that allows me to manage all of her appts, meetings, etc -- I sure do enjoy having a life separate from her stuff. I, too, am a teacher by training. I taught preschool and elementary. My knowledge of child development and learning theory, plus having used the preschool spec ed program as a teacher, helped a great deal. However, I have learned more about all those things from watching her development. It's amazing how one missing factor can make such a huge difference in the overall picture. Her development has been sort of like in slow motion. I've been able to really see how things progress, how each area affects the other, etc. It's been an amazing journey! So happy to have you aboard! This is a group I never would have joined by choice -- but, now that I'm here -- I wouldn't want to be anywhere else with any other group of people. As we drove up to the hotel for one of the CHARGE conferences, my now 12-year-old son asked why CHARGE families are so great. Does CHARGE only happen to nice, wonderful people? Or do only the nice, wonderful CHARGE people find their way to the CHARGE list and conferences? Hmmm... pretty interesting observation for a kid! I think you'll find wonderful support here! Michele W mom to Aubrie (6 yrs) CHaRgE and (12 yrs) New Member > Hello, > My name is Kristy, and I have a 16 month old that was diagnosed with CHARGE > Syndrome when he was in the NICU, 12 months ago (he's been home for ten > months now...). He's doing wonderfully, I just wanted to basically > introduce ourselves. My son's name is Kaleb, he currently has a trach, > j-tube and is on oxygen. His coloboma is in his optical nerve. He was born > premature, and a valve in his heart didn't close, but it was fixed, he has > an apnea monitor for when he's sleeping at night, along with his > pulsoximeter. He was also born w/TEF (Tracheal Esophegeal Fistula) which > was repaired the day he was born...He also has Reflux, and GERD... His right > nostril(just a warning i'm a horrible speller) (atresia,inside) is > narrower... his left ear is the charastic square and set low. His genitalia > is smaller than normal. His hearing is still in the process of being > tested, right now a sedated test is pending. His vision is being monitored > by a reputable doctor, whom was very positive about prospects. He had an > MRI done when he was in the NICU, and they reported to us that his brain > looked normal. > He's an amazing little boy, who's been through so much, he's strong and > bright. He's our little angel! My intent also is to connect with other > parents and such that can give advice and a group that I can relate to, and > hopefully to better understand and to help my son. > I found Yahoo! groups through a friend, a fellow NF survivor. NF, > Necrotizing Faciitis: " the flesh eating desease " . And was hopeing there was > a group for CHARGE! So we're extatic that we're able to connect and to > relate to others. > Right now Kaleb is learning to sit independantly, he has a prone stander as > well, helping to build great bones! He has a walker (the baby kind), that > he gets around in. He's very active and loves to dance and move around. > We live in land, and now that the weather is getting to be more > spring-like, Kaleb's been itching to get outside. He loves the outdoors (as > long as he's wearing sun-glasses)! And he loves to travel. Last summer we > went camping (in an RV) in Virginia, for a family reunion, and I think if he > could speak/talk he would say that's been his favorite thing! > Kaleb is learning sign-language. He's now signing " more " independantly, > we're working on finished and having him choose (relating the sign w/the > item) out of his communication box. > I have a background in special education, and all along i've had numerous > people tell me that God paired us up for a reason... he really couldn't have > better parents. My husband at times has a hard time dealing with > Kaleb's special needs, and is unable to relate to his fellow co-workers > about their children. I've reasured him however that there are plenty of > things he has to boast about, and he's getting better! He knows how special > Kaleb is, and how wonderfully he's doing. Kaleb is definately a daddy's > boy. > With my special education background I feel privledge to be able to stay > home with Kaleb, for early intervention and to maximize his learning > potential. When we first brought Kaleb home he was more fragile and > medically sensative. Now he's much more the toddler, who loves to > rough-house and to stay active. > We live in land, we haven't ventured as much as joining support groups > that are local, but I thought this would be a great start for our family. > Thank you for listening (or should I say " reading " ) and I look forward to > sharing w/you'all... > Gob Bless & keep you safe, > ~ Kristy > > _________________________________________________________________ > Find things fast with the new MSN Toolbar - includes FREE pop-up blocking! > http://clk.atdmt.com/AVE/go/onm00200414ave/direct/01/ > > > > 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 March 8, 2004 Report Share Posted March 8, 2004 Kristy- Just wanted to welcome you to our CHARGE family! My daughter, Aubrie, is 6 yrs old. She did not have respiratory issues, but did have a Gtube until about age 1.5 yrs. She has optic nerve coloboma in one eye but the other has near normal vision. She has mild-mod loss in one ear and mod-sev in the other. Functionally, she has pretty good hearing with her aids. She has some fine and gross motor delays, speech articulation problems, and balance issues, but she gets around quite well (a little slower than her peers), speaks well enough to manage with people who know her, eats orally, and is learning to read! She's in regular kindergarten with a 1:1 aide. I also stayed home with her until she was in school. Luckily, she went to school at age 3 so that freed me up. Boy, did I need it! As much as I feel fortunate to have a work schedule that allows me to manage all of her appts, meetings, etc -- I sure do enjoy having a life separate from her stuff. I, too, am a teacher by training. I taught preschool and elementary. My knowledge of child development and learning theory, plus having used the preschool spec ed program as a teacher, helped a great deal. However, I have learned more about all those things from watching her development. It's amazing how one missing factor can make such a huge difference in the overall picture. Her development has been sort of like in slow motion. I've been able to really see how things progress, how each area affects the other, etc. It's been an amazing journey! So happy to have you aboard! This is a group I never would have joined by choice -- but, now that I'm here -- I wouldn't want to be anywhere else with any other group of people. As we drove up to the hotel for one of the CHARGE conferences, my now 12-year-old son asked why CHARGE families are so great. Does CHARGE only happen to nice, wonderful people? Or do only the nice, wonderful CHARGE people find their way to the CHARGE list and conferences? Hmmm... pretty interesting observation for a kid! I think you'll find wonderful support here! Michele W mom to Aubrie (6 yrs) CHaRgE and (12 yrs) New Member > Hello, > My name is Kristy, and I have a 16 month old that was diagnosed with CHARGE > Syndrome when he was in the NICU, 12 months ago (he's been home for ten > months now...). He's doing wonderfully, I just wanted to basically > introduce ourselves. My son's name is Kaleb, he currently has a trach, > j-tube and is on oxygen. His coloboma is in his optical nerve. He was born > premature, and a valve in his heart didn't close, but it was fixed, he has > an apnea monitor for when he's sleeping at night, along with his > pulsoximeter. He was also born w/TEF (Tracheal Esophegeal Fistula) which > was repaired the day he was born...He also has Reflux, and GERD... His right > nostril(just a warning i'm a horrible speller) (atresia,inside) is > narrower... his left ear is the charastic square and set low. His genitalia > is smaller than normal. His hearing is still in the process of being > tested, right now a sedated test is pending. His vision is being monitored > by a reputable doctor, whom was very positive about prospects. He had an > MRI done when he was in the NICU, and they reported to us that his brain > looked normal. > He's an amazing little boy, who's been through so much, he's strong and > bright. He's our little angel! My intent also is to connect with other > parents and such that can give advice and a group that I can relate to, and > hopefully to better understand and to help my son. > I found Yahoo! groups through a friend, a fellow NF survivor. NF, > Necrotizing Faciitis: " the flesh eating desease " . And was hopeing there was > a group for CHARGE! So we're extatic that we're able to connect and to > relate to others. > Right now Kaleb is learning to sit independantly, he has a prone stander as > well, helping to build great bones! He has a walker (the baby kind), that > he gets around in. He's very active and loves to dance and move around. > We live in land, and now that the weather is getting to be more > spring-like, Kaleb's been itching to get outside. He loves the outdoors (as > long as he's wearing sun-glasses)! And he loves to travel. Last summer we > went camping (in an RV) in Virginia, for a family reunion, and I think if he > could speak/talk he would say that's been his favorite thing! > Kaleb is learning sign-language. He's now signing " more " independantly, > we're working on finished and having him choose (relating the sign w/the > item) out of his communication box. > I have a background in special education, and all along i've had numerous > people tell me that God paired us up for a reason... he really couldn't have > better parents. My husband at times has a hard time dealing with > Kaleb's special needs, and is unable to relate to his fellow co-workers > about their children. I've reasured him however that there are plenty of > things he has to boast about, and he's getting better! He knows how special > Kaleb is, and how wonderfully he's doing. Kaleb is definately a daddy's > boy. > With my special education background I feel privledge to be able to stay > home with Kaleb, for early intervention and to maximize his learning > potential. When we first brought Kaleb home he was more fragile and > medically sensative. Now he's much more the toddler, who loves to > rough-house and to stay active. > We live in land, we haven't ventured as much as joining support groups > that are local, but I thought this would be a great start for our family. > Thank you for listening (or should I say " reading " ) and I look forward to > sharing w/you'all... > Gob Bless & keep you safe, > ~ Kristy > > _________________________________________________________________ > Find things fast with the new MSN Toolbar - includes FREE pop-up blocking! > http://clk.atdmt.com/AVE/go/onm00200414ave/direct/01/ > > > > 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 March 8, 2004 Report Share Posted March 8, 2004 welcome to the group--I have a 8 year old charger--timmy. New Member > Hello, > My name is Kristy, and I have a 16 month old that was diagnosed with CHARGE > Syndrome when he was in the NICU, 12 months ago (he's been home for ten > months now...). He's doing wonderfully, I just wanted to basically > introduce ourselves. My son's name is Kaleb, he currently has a trach, > j-tube and is on oxygen. His coloboma is in his optical nerve. He was born > premature, and a valve in his heart didn't close, but it was fixed, he has > an apnea monitor for when he's sleeping at night, along with his > pulsoximeter. He was also born w/TEF (Tracheal Esophegeal Fistula) which > was repaired the day he was born...He also has Reflux, and GERD... His right > nostril(just a warning i'm a horrible speller) (atresia,inside) is > narrower... his left ear is the charastic square and set low. His genitalia > is smaller than normal. His hearing is still in the process of being > tested, right now a sedated test is pending. His vision is being monitored > by a reputable doctor, whom was very positive about prospects. He had an > MRI done when he was in the NICU, and they reported to us that his brain > looked normal. > He's an amazing little boy, who's been through so much, he's strong and > bright. He's our little angel! My intent also is to connect with other > parents and such that can give advice and a group that I can relate to, and > hopefully to better understand and to help my son. > I found Yahoo! groups through a friend, a fellow NF survivor. NF, > Necrotizing Faciitis: " the flesh eating desease " . And was hopeing there was > a group for CHARGE! So we're extatic that we're able to connect and to > relate to others. > Right now Kaleb is learning to sit independantly, he has a prone stander as > well, helping to build great bones! He has a walker (the baby kind), that > he gets around in. He's very active and loves to dance and move around. > We live in land, and now that the weather is getting to be more > spring-like, Kaleb's been itching to get outside. He loves the outdoors (as > long as he's wearing sun-glasses)! And he loves to travel. Last summer we > went camping (in an RV) in Virginia, for a family reunion, and I think if he > could speak/talk he would say that's been his favorite thing! > Kaleb is learning sign-language. He's now signing " more " independantly, > we're working on finished and having him choose (relating the sign w/the > item) out of his communication box. > I have a background in special education, and all along i've had numerous > people tell me that God paired us up for a reason... he really couldn't have > better parents. My husband at times has a hard time dealing with > Kaleb's special needs, and is unable to relate to his fellow co-workers > about their children. I've reasured him however that there are plenty of > things he has to boast about, and he's getting better! He knows how special > Kaleb is, and how wonderfully he's doing. Kaleb is definately a daddy's > boy. > With my special education background I feel privledge to be able to stay > home with Kaleb, for early intervention and to maximize his learning > potential. When we first brought Kaleb home he was more fragile and > medically sensative. Now he's much more the toddler, who loves to > rough-house and to stay active. > We live in land, we haven't ventured as much as joining support groups > that are local, but I thought this would be a great start for our family. > Thank you for listening (or should I say " reading " ) and I look forward to > sharing w/you'all... > Gob Bless & keep you safe, > ~ Kristy > > _________________________________________________________________ > Find things fast with the new MSN Toolbar - includes FREE pop-up blocking! > http://clk.atdmt.com/AVE/go/onm00200414ave/direct/01/ > > > > 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 March 10, 2004 Report Share Posted March 10, 2004 Swollowing issues: Hmmm I think it really depends. Did your son have a barium/swallow study to determin what may be causing him to have diffriculty swallowing? Also I dont know if I missed this but does your son have choanal atresia? I did and because I was a mouth breather it was very slow to swallow. I did get a lot of aspiration pnmonia as a youngster. Even now my swallowing isnt 100percent even though its very good compared to most CHARGErs. I tend to find liquids harder to swallow (I tend to choke more) then swallowing solid foods. For some reason I also have to swallow large amounts cause if I swallow just a little at a time I tend to send it down the wrong pipe. I cant answere if swallowing issues are outgrown cause I dont know. I do know that a few CHARGErs have had improvement in swallowing issues. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2004 Report Share Posted March 10, 2004 For me Swallowing depends on a day to day basis. There are days when my swallowing is fantasic and I can swallow anything. And there are days when it's the pits and I can only swallow liquids. Sincerely yours; Krista Bach. > >Reply-To: CHARGE >To: CHARGE >Subject: Re: New Member >Date: Wed, 10 Mar 2004 14:19:42 -0000 > >Swollowing issues: > >Hmmm I think it really depends. Did your son have a barium/swallow >study to determin what may be causing him to have diffriculty >swallowing? Also I dont know if I missed this but does your son have >choanal atresia? > >I did and because I was a mouth breather it was very slow to >swallow. I did get a lot of aspiration pnmonia as a youngster. Even >now my swallowing isnt 100percent even though its very good compared >to most CHARGErs. I tend to find liquids harder to swallow (I tend >to choke more) then swallowing solid foods. For some reason I also >have to swallow large amounts cause if I swallow just a little at a >time I tend to send it down the wrong pipe. > >I cant answere if swallowing issues are outgrown cause I dont know. >I do know that a few CHARGErs have had improvement in swallowing >issues. > _________________________________________________________________ MSN Premium with Virus Guard and Firewall* from McAfee® Security : 2 months FREE* http://join.msn.com/?pgmarket=en-ca & page=byoa/prem & xAPID=1994 & DI=1034 & SU=http://\ hotmail.com/enca & HL=Market_MSNIS_Taglines Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2004 Report Share Posted March 10, 2004 Hey Krista, I was wondering, when you say some days are good and some are bad for swallowing, do you notice if the days are based on how much liquid you have all ready had that day? What I mean is if you drink more water does it make your swallowing easier or harder? Or does it not matter. Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 , the eating difficulties for these kids are so complicated and so different for each child. My baby's swallow has been strengthened by a therapy called VITALSTIM. This hasn't worked for everyone, but has helped her. This therapy, in her case is given by a speech therapist. Our G.I. doc's are all for this therapy here in Orange County, California. One thing about Whitney is that she does not have a trache and she wants to eat. She never did great with a bottle after she got her stints out of her nose. Rice cereal, oatmeal and sweetpotatoes have worked, but she is only able to take about 17 1/2 cc's each feed. We hope to build from this. For more info on this therapy check http://www.vitalstimtherapy.com/. Good luck and let us know what the G.I. Doctors say. DeAnn, Mom to Austin 8, 5, and CHARgE Whitney 7 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 It doesn't matter how much liquids I have. I don't know if a meal will be a meal I can eat really well or if I'll have problems swallowing it. It depends day by day sometimes meal by meal on what I can and can't swallow. Sincerely yours; Krista Bach. > >Reply-To: CHARGE >To: CHARGE >Subject: Re: New Member >Date: Wed, 10 Mar 2004 16:13:33 -0000 > >Hey Krista, > >I was wondering, when you say some days are good and some are bad >for swallowing, do you notice if the days are based on how much >liquid you have all ready had that day? What I mean is if you drink >more water does it make your swallowing easier or harder? Or does it >not matter. > >Chantelle > _________________________________________________________________ MSN Premium: Up to 11 personalized e-mail addresses and 2 months FREE* http://join.msn.com/?pgmarket=en-ca & page=byoa/prem & xAPID=1994 & DI=1034 & SU=http://\ hotmail.com/enca & HL=Market_MSNIS_Taglines Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 It doesn't matter how much liquids I have. I don't know if a meal will be a meal I can eat really well or if I'll have problems swallowing it. It depends day by day sometimes meal by meal on what I can and can't swallow. Sincerely yours; Krista Bach. > >Reply-To: CHARGE >To: CHARGE >Subject: Re: New Member >Date: Wed, 10 Mar 2004 16:13:33 -0000 > >Hey Krista, > >I was wondering, when you say some days are good and some are bad >for swallowing, do you notice if the days are based on how much >liquid you have all ready had that day? What I mean is if you drink >more water does it make your swallowing easier or harder? Or does it >not matter. > >Chantelle > _________________________________________________________________ MSN Premium: Up to 11 personalized e-mail addresses and 2 months FREE* http://join.msn.com/?pgmarket=en-ca & page=byoa/prem & xAPID=1994 & DI=1034 & SU=http://\ hotmail.com/enca & HL=Market_MSNIS_Taglines Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Melany, Welcome. Your son sounds a little like my son Mark. Who is now 20. He eats a ground diet now. He had a tube for 11 years. Among various other problems we have hung in there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Melany, Welcome. Your son sounds a little like my son Mark. Who is now 20. He eats a ground diet now. He had a tube for 11 years. Among various other problems we have hung in there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Ho My name is Melany and I have a 15 month old son son--Brock with CHARGE. I just reactivated on to the group so sorry if you have received something from me already. My son also had had a TEF it was repaired at 9 days old that is pretty amazing they repaired your sons so quickly--it took 5 days for doctors to figure it out. Well he also is doing really good, he has been sitting up on his own now 2 months and is walking with support. Brock hates to be on his belly. He has a g-tube but has been eating own his own for 10 mths. He has retinal coloboma, profound deafness, undescended testicles, an atrial septal defect and neuro-muscular scoliosis--his list has gotten shorter. Brock was in the NICU for 3 mths and was lucky he did'nt get a trach. We are in Fort Myers Florida and next week getting ready to go to Shands Hospital in Gainseville to discuss cochlear implants. Would like any advice on questions to ask or experiences. Hope to hear from you. Take care Melany > Hello, > My name is Kristy, and I have a 16 month old that was diagnosed with CHARGE > Syndrome when he was in the NICU, 12 months ago (he's been home for ten > months now...). He's doing wonderfully, I just wanted to basically > introduce ourselves. My son's name is Kaleb, he currently has a trach, > j-tube and is on oxygen. His coloboma is in his optical nerve. He was born > premature, and a valve in his heart didn't close, but it was fixed, he has > an apnea monitor for when he's sleeping at night, along with his > pulsoximeter. He was also born w/TEF (Tracheal Esophegeal Fistula) which > was repaired the day he was born...He also has Reflux, and GERD... His right > nostril(just a warning i'm a horrible speller) (atresia,inside) is > narrower... his left ear is the charastic square and set low. His genitalia > is smaller than normal. His hearing is still in the process of being > tested, right now a sedated test is pending. His vision is being monitored > by a reputable doctor, whom was very positive about prospects. He had an > MRI done when he was in the NICU, and they reported to us that his brain > looked normal. > He's an amazing little boy, who's been through so much, he's strong and > bright. He's our little angel! My intent also is to connect with other > parents and such that can give advice and a group that I can relate to, and > hopefully to better understand and to help my son. > I found Yahoo! groups through a friend, a fellow NF survivor. NF, > Necrotizing Faciitis: " the flesh eating desease " . And was hopeing there was > a group for CHARGE! So we're extatic that we're able to connect and to > relate to others. > Right now Kaleb is learning to sit independantly, he has a prone stander as > well, helping to build great bones! He has a walker (the baby kind), that > he gets around in. He's very active and loves to dance and move around. > We live in land, and now that the weather is getting to be more > spring-like, Kaleb's been itching to get outside. He loves the outdoors (as > long as he's wearing sun-glasses)! And he loves to travel. Last summer we > went camping (in an RV) in Virginia, for a family reunion, and I think if he > could speak/talk he would say that's been his favorite thing! > Kaleb is learning sign-language. He's now signing " more " independantly, > we're working on finished and having him choose (relating the sign w/the > item) out of his communication box. > I have a background in special education, and all along i've had numerous > people tell me that God paired us up for a reason... he really couldn't have > better parents. My husband at times has a hard time dealing with > Kaleb's special needs, and is unable to relate to his fellow co- workers > about their children. I've reasured him however that there are plenty of > things he has to boast about, and he's getting better! He knows how special > Kaleb is, and how wonderfully he's doing. Kaleb is definately a daddy's > boy. > With my special education background I feel privledge to be able to stay > home with Kaleb, for early intervention and to maximize his learning > potential. When we first brought Kaleb home he was more fragile and > medically sensative. Now he's much more the toddler, who loves to > rough-house and to stay active. > We live in land, we haven't ventured as much as joining support groups > that are local, but I thought this would be a great start for our family. > Thank you for listening (or should I say " reading " ) and I look forward to > sharing w/you'all... > Gob Bless & keep you safe, > ~ Kristy > > _________________________________________________________________ > Find things fast with the new MSN Toolbar – includes FREE pop-up blocking! > http://clk.atdmt.com/AVE/go/onm00200414ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 " The tests came back as 3% of the amount that they would consider dangerous. " Sorry I have brainfog, its one of my symptoms, I meant to say 1/3 not 3% > Hello all I am new here. > > I am an ex-dental nurse living in the UK who is suffering from > FMS/CFS have been sick for at least 8 years. > > I have worked for many crazy dentists in my time. not joking, > seriously, dreadfully mad people. > mad as hatters (I wonder why) > > I am not mad, fortunately, lol! > but definitely a wee bit eccentric, in the nicest possible way, at > least thats what people tell me! LMAO > no seriously I did have a strange episode which prompted me to leave > my profession about 20 years ago, but dont have any problems of that > nature now. > English people are supposed to be eccentric lol > > nowadays all dental staff over here wear gloves and masks all the > time, and many have air conditioned surgeries. > I was not just exposed to mercury but blood as well, risking aids > and HepB, no one wore gloves or masks when I was working. > > I bet theres tons of mercury in the air conditioner filters. > The aspirators they use when they drill out fillings, have an > exhaust, and the mercury vapour which is released by the aerosol > effect of the high speed drill, is sent straight back into the room > again, so its not only being sprayed around the room by the drill, > but also by the aspirator. > > the surgery would have been chock full of the stuff, breathing it > in, settling on everything and everyone. > > I worked chairside for ten years, no mask, no gloves, and also I had > the job of filling up the amalgam machine with mercury every single > day. > sometimes it would spill, its slippery heavy stuff, and it splits > into thousands of tiny globules which run about everywhere, it moves > very fast, thats why its sometimes called quicksilver. We had carpet > on the floor. They say you should get special crystals to get rid of > it from carpets, I asked for this many times but the dentists would > not waste their money on it, so I was sitting above a carpet full of > mercury every single day. and guess who empties the aspirator bottle > full of mercury and saliva at the end of the day? > > When amalgam fillings were being done (dozens of them in each day) I > had to fill the amalgum gun with the soft mercury and silver amalgam, > which the dentist then pushes into the teeth, I was handling this > stuff in its unhardened state hundreds of times a week. > > my wedding ring and engagement ring had pinholes in them where the > mercury had bitten into the metal. > > They say that dental workers homes are full of mercury too, it comes > in on your clothes and hair and settles into the furniture and > carpets, even your bed. > > I just wish I could really prove the link with CFS, once and for all! > > I would sue those Dentists a***s off, honestly, why should I be so > poor and disabled, when all the while these dentists have great > insurance policies, no harm would be done to them. The dentists I > worked for did not take proper precautions to protect their staff. > much too stingy and tight, they were all alike as peas in a pod that > way. I would say that makes them liable. > > Its bad enough being sick and losing everything I had, let alone > having to scrimp and scrape just to get by, possibly for the rest of > my life. > Its a huge cover up, they are fully aware what has been going on and > they are all scared s***less. > Dentists and doctors and the whole medical proffession, terrified > they will be held responsible for their monumental cock-up. > > I have an aunt who still works as a dental nurse. she has > fibromyalgia, she helped me research mercury poisoning and chelation > for a while. Her FMS is improving so she lost interest. > > Meanwhile I found a really good GP. and twisted her arm about mercury > testing. she phoned the hospital and they said no way will you ever > get mercury testing for CFS/FMS on the NHS. But neither of us would > take no for an answer and she got me in with a neurologist. > He was very sympathetic and sad, and tried to direct me away from > mercury testing, but I argued and he finally gave in. > The tests came back as 3% of the amount that they would consider > dangerous. > Of course the NHS tests are no good because you dont excrete > mercury. If its lodged in your organs it wont show up in your blood, > the whole point is that it stays in the body and the body cant get > rid of it, so it stands to reason it wont show up in a normal blood > test. > I kind of gave up for a while then, but recently I met someone on the > net who is chelating. She is going to get some testing done for me > using DPMS (?) and I will take it from there. > > Glad to have found this site, > > > Best to you > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 Hi , Don't lose hope about getting back to work again - albeit not in a dental surgery. First thing you must think about (before even thinking about chelation) is to have your own amalgam fillings removed. Where abouts in the UK do you live? I had my amalgams removed by an excellent dentist in Huddersfield - let me know if you want his details. Then you can think about chelating. I too had a diagnosis of ME but feel sure my problems are mercury related (possibly complicated by lyme - not yet sure) and have had some improvements with amalgam removal and chelation. Still have some way to go but it's early days. Andy Culters book on amalgam illness is a great help to. Sometimes available through www. amazon.com or www.amazon.co.uk. Best wishes, wrote: > > Hello all I am new here. > > I am an ex-dental nurse living in the UK who is suffering from > FMS/CFS have been sick for at least 8 years. > > I have worked for many crazy dentists in my time. not joking, > seriously, dreadfully mad people. > mad as hatters (I wonder why) > > I am not mad, fortunately, lol! > but definitely a wee bit eccentric, in the nicest possible way, at > least thats what people tell me! LMAO > no seriously I did have a strange episode which prompted me to leave > my profession about 20 years ago, but dont have any problems of that > nature now. > English people are supposed to be eccentric lol > > nowadays all dental staff over here wear gloves and masks all the > time, and many have air conditioned surgeries. > I was not just exposed to mercury but blood as well, risking aids > and HepB, no one wore gloves or masks when I was working. > > I bet theres tons of mercury in the air conditioner filters. > The aspirators they use when they drill out fillings, have an > exhaust, and the mercury vapour which is released by the aerosol > effect of the high speed drill, is sent straight back into the room > again, so its not only being sprayed around the room by the drill, > but also by the aspirator. > > the surgery would have been chock full of the stuff, breathing it > in, settling on everything and everyone. > > I worked chairside for ten years, no mask, no gloves, and also I had > the job of filling up the amalgam machine with mercury every single > day. > sometimes it would spill, its slippery heavy stuff, and it splits > into thousands of tiny globules which run about everywhere, it moves > very fast, thats why its sometimes called quicksilver. We had carpet > on the floor. They say you should get special crystals to get rid of > it from carpets, I asked for this many times but the dentists would > not waste their money on it, so I was sitting above a carpet full of > mercury every single day. and guess who empties the aspirator bottle > full of mercury and saliva at the end of the day? > > When amalgam fillings were being done (dozens of them in each day) I > had to fill the amalgum gun with the soft mercury and silver amalgam, > which the dentist then pushes into the teeth, I was handling this > stuff in its unhardened state hundreds of times a week. > > my wedding ring and engagement ring had pinholes in them where the > mercury had bitten into the metal. > > They say that dental workers homes are full of mercury too, it comes > in on your clothes and hair and settles into the furniture and > carpets, even your bed. > > I just wish I could really prove the link with CFS, once and for all! > > I would sue those Dentists a***s off, honestly, why should I be so > poor and disabled, when all the while these dentists have great > insurance policies, no harm would be done to them. The dentists I > worked for did not take proper precautions to protect their staff. > much too stingy and tight, they were all alike as peas in a pod that > way. I would say that makes them liable. > > Its bad enough being sick and losing everything I had, let alone > having to scrimp and scrape just to get by, possibly for the rest of > my life. > Its a huge cover up, they are fully aware what has been going on and > they are all scared s***less. > Dentists and doctors and the whole medical proffession, terrified > they will be held responsible for their monumental cock-up. > > I have an aunt who still works as a dental nurse. she has > fibromyalgia, she helped me research mercury poisoning and chelation > for a while. Her FMS is improving so she lost interest. > > Meanwhile I found a really good GP. and twisted her arm about mercury > testing. she phoned the hospital and they said no way will you ever > get mercury testing for CFS/FMS on the NHS. But neither of us would > take no for an answer and she got me in with a neurologist. > He was very sympathetic and sad, and tried to direct me away from > mercury testing, but I argued and he finally gave in. > The tests came back as 3% of the amount that they would consider > dangerous. > Of course the NHS tests are no good because you dont excrete > mercury. If its lodged in your organs it wont show up in your blood, > the whole point is that it stays in the body and the body cant get > rid of it, so it stands to reason it wont show up in a normal blood > test. > I kind of gave up for a while then, but recently I met someone on the > net who is chelating. She is going to get some testing done for me > using DPMS (?) and I will take it from there. > > Glad to have found this site, > > > Best to you > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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