Guest guest Posted September 4, 2003 Report Share Posted September 4, 2003 Thank you! Out of curiosity, how old were you when you were diagnosed? (r's mom) Kay Lynd wrote: Hello and welcome. Kay 49 year old charger introduction > Hi, I am a new member and would like to introduce myself. My name is > and my son r (16 mo.) has been diagnosed with Charge and > EEC syndromes. He was born with Choantal Atresia, Coloboma and > Hydronephrosis. He had severe Reflux and had the Fundoplication surgery > and G-tube placed. r has had around 15 surgery's so far and 2 more > coming up. He is taking everything by mouth and hopefully soon he will > be able to get rid of the G-tube. > > We also have a daughter, Raelynn 4 yrs and has been wonderful with r > and for him too! he has come such a long way, he is close to walking ( he > has taken up to 8 steps by himself) and saying dada and mama! Our family > has been wonderful in supporting us and r! > > I have been getting the e mails for a week or so and this site has helped so much > reading about all of your stories and advice. I have just now really started researching > and trying/needing the support! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2003 Report Share Posted October 6, 2003 Sue, Welcome to the list! It sounds like is doing great, especially with him wanting to meet someone " like him " ! Where are you at in the world? The next CHARGE Conference is in Miami in 2005 and I guarantee he'll meet LOTS of friends there! Weir Mom to Kennedy, 5 yr old CHARGEr, 14, 12 and wife to Graeme New Brunswick, Canada Visit our family web site: http://personal.nbnet.nb.ca/gweir CHARGE Syndrome Canada: http://www.chargesyndrome.ca Introduction Hi, I have a son,, who is 11 with CHARGE or as the doctors put it " partial CHARGE " . Then later they said they weren't sure. Anyway, when was a baby he ran alot of temperatures in the hospital but he was fine. As soon as they would pull off his clothes he would cool right down. In the winter, I had to keep him in t-shirts, if I put him in sweatshirts or sweaters, he would sweat alot. In the summer he sweats more than any kid I know. We've gotten used to it, I guess. had heart surgery when he was 3 months old, he had a tube also for feeding the first few months, then we went with the g-tube. I think he started eating orally close to 1 year old. He's had a trach at 2-3 yrs old for sleep apnea. He has facial palsy, no left thumb, one kidney, no hearing in his left ear and only an ear lobe (microtia). He had all speech & physical therapist when he was a baby to help him catch up. Now it seems like a lifetime ago! I started reading this site because my son said to me that he wanted to meet someone like himself. I find myself reading about what everyone is going through and my heart and prayers go out to everyone. I haven't been through all of it, but alot I have and I know it can be frustrating, but the results are priceless. I'm here for support and also to learn more. I don't always get on the computer as much as I'd like (who does!), but I try to keep up with the site. I do have one question, has anyone had experience with plastic surgery of the ear (microtia)? I would really be interested. Thanks & God Bless Sue ,mom to Sott 11 (charge) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2003 Report Share Posted November 6, 2003 hello christine how is it that you use the computer so easily and need a guide dog to travel? how did you adapt your computer? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2003 Report Share Posted November 8, 2003 , I'm SO glad you found us and that you're willing to share your life with us. Such an inspiration. Are you in Canada? (I thought from your email address you might be) I'm in New Brunswick and have a five year old girl who has CHARGE. I can't wait to hear more from you! Weir Mom to Kennedy, 5 yr old CHARGEr, 14, 12 and wife to Graeme New Brunswick, Canada Visit our family web site: http://personal.nbnet.nb.ca/gweir CHARGE Syndrome Canada: http://www.chargesyndrome.ca Introduction Hello, I just wanted to quickly introduce myself. I have been on this list for the past week and have been really interested in the posts. My name is . I am 24 years old and have Charge. I was born with the cleft palate, coloboma of the iris, congenital cataracts, hearing impairment, and the lobe missing from my left ear. I had of course many surgeries when I was a kid. I am now considering having reconstructive surgery done on my left ear, but I am still looking at my options. I have not let my condition stop me from doing anything in my life. I use a guide dog to travel independently and I use many adaptive aids to help me with every day tasks. I am currently in my second year of a Bachelors program. It took me six years after high school to figure out what I wanted to do!! LOL But now I am well on my way to being an adaptive technology specialist. I hope that I can contribute to this list with my own personal experiences with having Charge. Please don't hesitate to contact me off list if you have any questions. and Guide Dog Velda christine-ann@... MSN kuwii@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2003 Report Share Posted November 8, 2003 Hi ! I am 25 and have CHARGE syndrome too. I live in Hamilton Ontario Canada. I dont get on line much but I would love to get to know you! You have a guide dog? I want to get a guide dog too. Where did you get yours? Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2003 Report Share Posted November 8, 2003 Oh my mail address is Chantelle McLaren 635 Millgrove SideRd Waterdown, Ontario L0R 2H2 Im in Hamilton but my mailing address says Waterdown. It confuses the heck out of everyone! LOL actualy the township is Flambourough wich is part of Hamilton! LOL Its all messed I know! Write to me, or can I write to you?? Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2003 Report Share Posted November 8, 2003 Hey , My name is Chip, 24 yrs old CHARGEr from Los Angeles, Ca. Sorry that I didn't type back earlier, I guess I have been busy or something. Oh, you got a guide dog, cool! I got a chow mix name Sasha, and a american shorthair, around 4-5 yrs old name Meowth. Oh, do you go to college? I graduated from Mt Sac last May, with a pet science certificate, yeah! Now I got to a Dog Grooming Training School, it's fun! My email address is: ecdixon91010@... Keep in touch, smile! Ol' Chipper P.S. Oh Yeah, forgot to metion that I'm hard of hearing, near sighted, I'm around 5.5 or something tall, and now weigh around 81-82 lbs! I have been on this CHARGE List for around 5-6 yrs now, cool huh? -- --------- Original Message --------- DATE: Thu, 06 Nov 2003 12:27:21 To: CHARGE Cc: Hello, I just wanted to quickly introduce myself. I have been on this list for the past week and have been really interested in the posts. My name is . I am 24 years old and have Charge. I was born with the cleft palate, coloboma of the iris, congenital cataracts, hearing impairment, and the lobe missing from my left ear. I had of course many surgeries when I was a kid. I am now considering having reconstructive surgery done on my left ear, but I am still looking at my options. I have not let my condition stop me from doing anything in my life. I use a guide dog to travel independently and I use many adaptive aids to help me with every day tasks. I am currently in my second year of a Bachelors program. It took me six years after high school to figure out what I wanted to do!! LOL But now I am well on my way to being an adaptive technology specialist. I hope that I can contribute to this list with my own personal experiences with having Charge. Please don't hesitate to contact me off list if you have any questions. and Guide Dog Velda christine-ann@... MSN kuwii@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2003 Report Share Posted November 9, 2003 Hi , Yes I am from Canada. Vancouver BC. I love New Brunswick. I went there for two weeks a few years ago. I actually lived in Halifax for two years well. I love the Maritimes!! Introduction Hello, I just wanted to quickly introduce myself. I have been on this list for the past week and have been really interested in the posts. My name is . I am 24 years old and have Charge. I was born with the cleft palate, coloboma of the iris, congenital cataracts, hearing impairment, and the lobe missing from my left ear. I had of course many surgeries when I was a kid. I am now considering having reconstructive surgery done on my left ear, but I am still looking at my options. I have not let my condition stop me from doing anything in my life. I use a guide dog to travel independently and I use many adaptive aids to help me with every day tasks. I am currently in my second year of a Bachelors program. It took me six years after high school to figure out what I wanted to do!! LOL But now I am well on my way to being an adaptive technology specialist. I hope that I can contribute to this list with my own personal experiences with having Charge. Please don't hesitate to contact me off list if you have any questions. and Guide Dog Velda christine-ann@... MSN kuwii@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2003 Report Share Posted November 9, 2003 Hi Chantelle, Nice to meet you!! I got my little doggie from Guide Dogs from the Blind. That school is in the US. Their website is www.guidedogs.org. They are a great school!! It would be great to talk to someone else my age with charge so please dont hesitate to contact me! Re: Introduction Hi ! I am 25 and have CHARGE syndrome too. I live in Hamilton Ontario Canada. I dont get on line much but I would love to get to know you! You have a guide dog? I want to get a guide dog too. Where did you get yours? Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2003 Report Share Posted November 9, 2003 Hi Chip. Nice to meet you! Feel free to contact me via email anytime. Re: Introduction Hey , My name is Chip, 24 yrs old CHARGEr from Los Angeles, Ca. Sorry that I didn't type back earlier, I guess I have been busy or something. Oh, you got a guide dog, cool! I got a chow mix name Sasha, and a american shorthair, around 4-5 yrs old name Meowth. Oh, do you go to college? I graduated from Mt Sac last May, with a pet science certificate, yeah! Now I got to a Dog Grooming Training School, it's fun! My email address is: ecdixon91010@... Keep in touch, smile! Ol' Chipper P.S. Oh Yeah, forgot to metion that I'm hard of hearing, near sighted, I'm around 5.5 or something tall, and now weigh around 81-82 lbs! I have been on this CHARGE List for around 5-6 yrs now, cool huh? -- --------- Original Message --------- DATE: Thu, 06 Nov 2003 12:27:21 To: CHARGE Cc: Hello, I just wanted to quickly introduce myself. I have been on this list for the past week and have been really interested in the posts. My name is . I am 24 years old and have Charge. I was born with the cleft palate, coloboma of the iris, congenital cataracts, hearing impairment, and the lobe missing from my left ear. I had of course many surgeries when I was a kid. I am now considering having reconstructive surgery done on my left ear, but I am still looking at my options. I have not let my condition stop me from doing anything in my life. I use a guide dog to travel independently and I use many adaptive aids to help me with every day tasks. I am currently in my second year of a Bachelors program. It took me six years after high school to figure out what I wanted to do!! LOL But now I am well on my way to being an adaptive technology specialist. I hope that I can contribute to this list with my own personal experiences with having Charge. Please don't hesitate to contact me off list if you have any questions. and Guide Dog Velda christine-ann@... MSN kuwii@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2003 Report Share Posted December 11, 2003 weldome to the group, it has been so wonderufl and helpful to me over the years. my daughter is 8 now. she had many surgeries, 2 heart reapairs. she is so very beautiful! our children are very special as you will see. good luck with the surgery monday, you will be in our prayers. rememebr we are always here! you will get so much information from this list as well as support. Cathie, mom to 8 CHARgE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2003 Report Share Posted December 12, 2003 Rochel, You are in the right place. is in my prayers. I understand how you feel. I remember those first weeks like it was yesterday. Our daugher is 19 and doing well now. Remember to take care of yourself and let others help you. Lurk all you want. Where do you live? Lynn Ohio Mom to Tom 24, cHARGE, 19, and wife to Doug. Introduction Hi, My name is Rochel. My little girl was born just 3 days ago and has been diagnosed with CHARGE syndrome. So far she has been diagnosed with choanal atresia, heart abnormalities and bilateral coloboma. The renal scan was fine, but I assume that can't diagnose reflux so we don't know about that yet. Her hearing hasn't been checked yet. From the outside she seems to look completely normal (beautiful really, but maybe I'm biased) except maybe her genital area looks a little different to me, but they haven't gotten around to checking that out yet. Obviously I'm exhausted and my mind is whirling but otherwise I'm trying to put this in perspective. I know that usually things like this hit like a freight train but then things calm down and it becomes a part of your life as opposed to ruling your life like it seems it will at first. Her heart surgery will probably be on Monday. The nose surgery will probably be a week or so after that and then hopefully we will be able to bring her home. I guess I'll be spending a lot of time on this list. Obviously for the next couple of weeks or so I will not have the time or energy to post much if at all, but I will be lurking around. Nice to " meet " you all. Rochel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2003 Report Share Posted December 12, 2003 Sear Rochel, Welcome to the list. And Welcome to the world to CHAYA! What a pretty name. She sounds adorable. What kind of heart condition does have? Very best of luck with the surgery early next week. Please let us know how it goes and if there is any information that any of us can provide or if there is any way we can help. Do the doctors seem to be familiar with CHARGE? Was she born in a major medical center, or was she transferred? She sounds beautiful. Take good care and know I am thinking of you both. Mom to Kendra, 17, CHARGE, , 23, medical student and Camille, 25, chef Southern California Introduction Hi, My name is Rochel. My little girl was born just 3 days ago and has been diagnosed with CHARGE syndrome. So far she has been diagnosed with choanal atresia, heart abnormalities and bilateral coloboma. The renal scan was fine, but I assume that can't diagnose reflux so we don't know about that yet. Her hearing hasn't been checked yet. From the outside she seems to look completely normal (beautiful really, but maybe I'm biased) except maybe her genital area looks a little different to me, but they haven't gotten around to checking that out yet. Obviously I'm exhausted and my mind is whirling but otherwise I'm trying to put this in perspective. I know that usually things like this hit like a freight train but then things calm down and it becomes a part of your life as opposed to ruling your life like it seems it will at first. Her heart surgery will probably be on Monday. The nose surgery will probably be a week or so after that and then hopefully we will be able to bring her home. I guess I'll be spending a lot of time on this list. Obviously for the next couple of weeks or so I will not have the time or energy to post much if at all, but I will be lurking around. Nice to " meet " you all. Rochel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2003 Report Share Posted December 12, 2003 We will be here for you. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2003 Report Share Posted December 12, 2003 Rochel- I can't believe you found us in just 3 days!! And you already know that things really will be " ok " ! I'm so proud of you! Keep your chin up, love your little , and continue to handle things as they come. You are right that it will feel like a freight train now, but your life will return to " normal " someday. The key is that your definition of " normal " will change. With a positive and flexible attitude, you will continue to manage your life with beautifully. Welcome-- Michele W mom to Aubrie (6 yrs) CHaRgE and (12 yrs) Introduction Hi, My name is Rochel. My little girl was born just 3 days ago and has been diagnosed with CHARGE syndrome. So far she has been diagnosed with choanal atresia, heart abnormalities and bilateral coloboma. The renal scan was fine, but I assume that can't diagnose reflux so we don't know about that yet. Her hearing hasn't been checked yet. From the outside she seems to look completely normal (beautiful really, but maybe I'm biased) except maybe her genital area looks a little different to me, but they haven't gotten around to checking that out yet. Obviously I'm exhausted and my mind is whirling but otherwise I'm trying to put this in perspective. I know that usually things like this hit like a freight train but then things calm down and it becomes a part of your life as opposed to ruling your life like it seems it will at first. Her heart surgery will probably be on Monday. The nose surgery will probably be a week or so after that and then hopefully we will be able to bring her home. I guess I'll be spending a lot of time on this list. Obviously for the next couple of weeks or so I will not have the time or energy to post much if at all, but I will be lurking around. Nice to " meet " you all. Rochel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2003 Report Share Posted December 12, 2003 welcome to our " family " . I hope the surgeries go well--hugs to your little beauty. mom of Timmy 8 ChARGE, keegan 5.5, liam 3 wife to pat Introduction > Hi, > > My name is Rochel. My little girl was born just 3 days ago > and has been diagnosed with CHARGE syndrome. > > So far she has been diagnosed with choanal atresia, heart > abnormalities and bilateral coloboma. The renal scan was fine, but > I assume that can't diagnose reflux so we don't know about that > yet. Her hearing hasn't been checked yet. From the outside she > seems to look completely normal (beautiful really, but maybe I'm > biased) except maybe her genital area looks a little different to > me, but they haven't gotten around to checking that out yet. > > Obviously I'm exhausted and my mind is whirling but otherwise I'm > trying to put this in perspective. I know that usually things like > this hit like a freight train but then things calm down and it > becomes a part of your life as opposed to ruling your life like it > seems it will at first. > > Her heart surgery will probably be on Monday. The nose surgery will > probably be a week or so after that and then hopefully we will be > able to bring her home. > > I guess I'll be spending a lot of time on this list. > > Obviously for the next couple of weeks or so I will not have the > time or energy to post much if at all, but I will be lurking around. > > Nice to " meet " you all. > > Rochel > > > > 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 December 12, 2003 Report Share Posted December 12, 2003 Rochel, Welcome to the list we are here when you need us. Will be thinking of you Monday when your has her surgery. Weir Mom to Kennedy, 5 yr old CHARGEr, 14, 12 and wife to Graeme New Brunswick, Canada Visit our family web site: http://personal.nbnet.nb.ca/gweir CHARGE Syndrome Canada: http://www.chargesyndrome.ca Introduction Hi, My name is Rochel. My little girl was born just 3 days ago and has been diagnosed with CHARGE syndrome. So far she has been diagnosed with choanal atresia, heart abnormalities and bilateral coloboma. The renal scan was fine, but I assume that can't diagnose reflux so we don't know about that yet. Her hearing hasn't been checked yet. From the outside she seems to look completely normal (beautiful really, but maybe I'm biased) except maybe her genital area looks a little different to me, but they haven't gotten around to checking that out yet. Obviously I'm exhausted and my mind is whirling but otherwise I'm trying to put this in perspective. I know that usually things like this hit like a freight train but then things calm down and it becomes a part of your life as opposed to ruling your life like it seems it will at first. Her heart surgery will probably be on Monday. The nose surgery will probably be a week or so after that and then hopefully we will be able to bring her home. I guess I'll be spending a lot of time on this list. Obviously for the next couple of weeks or so I will not have the time or energy to post much if at all, but I will be lurking around. Nice to " meet " you all. Rochel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2003 Report Share Posted December 12, 2003 Hi, I've been ordered to stay home and rest so I have a little time to read all of your warm welcomes and tell you a little more about myself and my little girl. Thankfully, we live in Chicago so we have access to some of the best doctors and medical facilities. is in Children's Memorial Hospital, which from what I understand, is one of the very best places to be if a child needs to be in the hospital. She seems to be receiving excellent care. I am fortunate in a sense that I had medical issues as a teenager and I am familiar with a lot of the medical terms and procedures that we are dealing with now. I am also fortunate that my father, who is here visiting and is planning to stay until the worst of this is over, is a retired pediatrition so it has been great to have him around. The heart defects they found were a coarctation and a VSD. They were able to start prostaglandins quickly before the ductus was compromised so she seems OK in that area. She is pretty stable. There is a little bit of heart failure but it's pretty mild. They are not sure yet if they will try to dialate the coarc or sugically repair it. I think they will try to inject dye in first to see how severe it is before making a final decision. They are also not sure about the VSD. The echo seemed to indicate it was pretty big, but they might fix the coarc first and see how the VSD is affecting her. Basically, we don't know a whole lot yet exactly what is going to happen on Monday (hopefully on Monday anyway -- I know a lot of times these things get pushed off because of scheduling or other issues). Her choanal atresia is bilateral and it seems pretty severe. The ENT said the CAT scan didn't get the exact slice where the blockage was so he's not sure exactly what he'll find when he goes in (i.e. how much is bone and how much is soft tissue) and whether he will put a stint in or not or exactly what will need to be done. She has bilateral coloboma and a keyhole in one eye. Both optic nerves and maculas are involved. The doctor at this point didn't want to make any predictions about what her vision would be like because she indicated if she predicted it right it would just be luck. Like I said before, on the outside, except maybe for her genitals, she looks quite normal. Her ears look normal. I don't know hardly anything about facial palsy and if it manifests itself right away, but right now she looks normal to me. She scrunches up her face when she is crying or upset and it looks normal to me, but what do I know? She also seems to me to have pretty good upper body strength. In fact, they keep having to give her fentinyl when they try to put a line in or do some other procedure because she moves around too much and they have trouble keeping her arms and legs still. But again, I obviously have no idea how to diagnose if there is a problem. When she was first born and I tried to nurse her she actually latched on briefly and took two or three sucks before giving up (I guess because she couldn't breathe). I don't know if that is a promising sign or not. I've been pumping and freezing so that I'll be ready for her when she starts eating. I really hope she will be able to nurse because I know from past experience it's difficult for me to get enough from pumping. She doesn't have esophageal atresia, but she hasn't been checked yet for fistula or swallowing problems. I did have really bad polyhydramnios (really bad, at least 6 liters worth of fluid), but I also had almost as bad (maybe 5 liters) with my previous child and he swallows fine and had no congenital abnormalities so I don't know what that means. Also, they did see the stomach bubble in at least one fetal ultrasound (they couldn't see it in a previous ultrasound and that, coupled with a single umbilical artery and polyhydramnios, made us suspect esophageal atresia for three weeks until the next ultrasound showed us a stomach bubble. We were concerned about VATERS association and it's a little ironic that she has CHARGE instead). Her hearing hasn't been checked yet and we haven't gotten the results back from the genetic tests. Whew, I think that's about all I know. I'm certainly getting quite an education. Rochel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2003 Report Share Posted December 12, 2003 Welcome to the group, Im Father of (Not all charge sympthoms) but some how close, se is now 2 months old and she had coanal atresia and hearing problems, up to now she is doing well but we are starting with some feeding problems since can not breath and swallow properly, this is something that you really never expect but is great to see how every dat they do their best to grow and certainly there is a reason and a special mission our childs have. > Hi, > > My name is Rochel. My little girl was born just 3 days ago > and has been diagnosed with CHARGE syndrome. > > So far she has been diagnosed with choanal atresia, heart > abnormalities and bilateral coloboma. The renal scan was fine, but > I assume that can't diagnose reflux so we don't know about that > yet. Her hearing hasn't been checked yet. From the outside she > seems to look completely normal (beautiful really, but maybe I'm > biased) except maybe her genital area looks a little different to > me, but they haven't gotten around to checking that out yet. > > Obviously I'm exhausted and my mind is whirling but otherwise I'm > trying to put this in perspective. I know that usually things like > this hit like a freight train but then things calm down and it > becomes a part of your life as opposed to ruling your life like it > seems it will at first. > > Her heart surgery will probably be on Monday. The nose surgery will > probably be a week or so after that and then hopefully we will be > able to bring her home. > > I guess I'll be spending a lot of time on this list. > > Obviously for the next couple of weeks or so I will not have the > time or energy to post much if at all, but I will be lurking around. > > Nice to " meet " you all. > > Rochel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2003 Report Share Posted December 13, 2003 You have come to the right place for answers to questions and loving support. My heart goes out to you, take care. My beautiful CHARGEr is 6 months old now. It does get easier. Gwendelyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2003 Report Share Posted December 14, 2003 Rochel, WOW! That was quite a story--thank you for sharing. Know we will all be thinking of you, , and the rest of your family. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2003 Report Share Posted December 14, 2003 hi Rochel welcome to the list, my little charge'r is Josh , he is such a fun character, it is all a blur to me looking back on those early days! I continue to express milk for Josh, i joined a email list http://groups.yahoo.com/group/pumpmoms and it has been great ... if you have any questions about pumping but don't have time to join another list feel free to contact me off list: jo.maslin@... if you like. take care, Jo ds Ben 5-4-99, ds Josh 20-8-02 ----- Original Message ----- > When she was first born and I tried to nurse her she actually > latched on briefly and took two or three sucks before giving up (I > guess because she couldn't breathe). I don't know if that is a > promising sign or not. I've been pumping and freezing so that I'll > be ready for her when she starts eating. I really hope she will be > able to nurse because I know from past experience it's difficult for > me to get enough from pumping. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2007 Report Share Posted August 15, 2007 Hi, My name is Donna, I am 47 y/o. Last week my ruematologist referred me to a Neurolgist that specializes in MS. I am very anxious and tearful. Waiting to get an appointment is so slow. I just want to find out and get on with things. Right now I am just in Limbo. I called a Center in Atlanta that specializes in MS and they could see me Aug.31. The Neuro here is out of town until Thursday. She is very busy and appointments are difficult to get. Her office staff tells me she has the referrals with her and that she will priortise them, I quess according to the patients symptoms. I have been told that it can take months to see her. I don't know whether to wait until she can see me or go to Atlanta, which is about 8 hours away. I don't know what to do. I have not been officially diagnosed. My symptoms seem to be getting worse. For years Doctors blamed my symptoms on Fibromyalgia, Depression with anxiety. They said the pins and needle feeling in my hands and feet was caused by anxiety. My eyes are beginning to really bother me. I see and Opthamalogist yearly but he has never done any thing but write me a prescription for glasses. Wouldn't he have caught optic neuritis when he examined my eyes in May? I have read the files. I keep telling my self that it could be any number of things wrong with me. I keep telling myself to relax and just wait and see. I have a long list of symptoms. The numbness in my feet has worsened. I fell on vacation because my left foot was so numb . I didn't feel the step when I put my foot down. All my weight went on my right foot and I heard a snap. My lower back feels like spasms going up and down my back and sometimes I can hardly stand the pain. At first the spasms came after standing in the kitchen when I tried to cook. Now they are more frequent. At times the bottom of my feet hurt so bad that I can hardly stand it. I have scars from 3rd degree burns on my hand and arms from burning my self on the stove and oven. I lay in bed at times and watch the muscles in my legs twitch. What really scares me is my eyes. As I write this, my left eye is twitching. I have strange light shows at times and just weird things that happen. My side vision will get blurry. At times I feel like there is a straight line of pain that runs from the center of my lower back down the center of my left leg. I get so tired. There are days that I feel like I am walking in quick sand. My legs and arms get so heavy. I use to have the memory of an elephant. My memory comes and goes with good days and bad days. These are the main symptoms. Last week, I tried a different Reumatologist hoping that I could get some answers. I thought it was fribromyalgia and restless leg syndrome. The new doctor ran his tests but on the very first visit, he said he thought I should see a neurologist. He ruled out Lupus. He said He believed that I have perepheral neurapathy. He also said that he felt something else was going on neurologically. He tried me on lyrica for pain. Couldn't take it. My hands swelled up and my bp went up. Went back and saw his nurse practioner for 3rd visit. She gave me a prescription for requip for restless leg syndrome. That kept me up all night. When I called her back, she said not to take it anymore. While in her office, she talked to me about the Dr's notes and that he wanted me to be referred to a neurologist. I started crying and I asked her what was he thinking. She said that they believe I have MS but that only an neurologist could diagnose that. They referred me to the only Neurologist that specializes in MS in my area. I am still waiting to hear from their office. The Ruemotologist did not refer me to an Opthamalogist. Are there ones that specialize in MS? My aunt called me when she heard. Her advice was to go get tested for Lead poisoning and west nile virust because according to her, the have the same symptoms. She thinks I should do that instead of going through the expensive MRI and the spinal tap. Could it be Lead poisoning or west nile? I am so exhausted and depressed that I can't think straight. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2007 Report Share Posted August 15, 2007 Hi Donna~ Welcome to the group! My name is Valene. I'm also 47, married and together we have 11 children and 17 grandchildren. I am glad you joined the group. I'm sure you'll get a lot of support and information here. We are a close knit bunch that offer much encouragement and helpful support. I am sorry you are going through all of this. I was in fact, going through everything you discribe when I was finally dx'd in 1985. I feel that the best time to find out what you might have, is when you are having a flare up such as you have mentioned. Waiting several weeks or months is something I don't think I would do unless I just didn't have any options. I hope you are able to be seen real soon. MS mimics many other diseases, so it is a good idea to try to rule out all others. But, what you have described, sounds like it is MS. Your neurologist will want to do and MRI and possibly a spinal tap to confirm whether it is MS or not. I am sorry, I am much better at offering support and encouragement than giving you sound information. But, there are several people here who are a lot more qualified to give you information. And I'm sure they will do so without hesitation. I, however will lift you in prayer and hope that you find the answers you are looking for. Again, I'd like to welcome you to the group. Love and blessings...Val Introduction Hi,My name is Donna, I am 47 y/o. Last week my ruematologist referred me to a Neurolgist that specializes in MS.I am very anxious and tearful. Waiting to get an appointment is so slow. I just want to find out and get on with things. Right now I am just in Limbo.I called a Center in Atlanta that specializes in MS and they could see me Aug.31. The Neuro here is out of town until Thursday. She is very busy and appointments are difficult to get. Her office staff tells me she has the referrals with her and that she will priortise them, I quess according to the patients symptoms. I have been told that it can take months to see her. I don't know whether to wait until she can see me or go to Atlanta, which is about 8 hours away. I don't know what to do. I have not been officially diagnosed. My symptoms seem to be getting worse. For years Doctors blamed my symptoms on Fibromyalgia, Depression with anxiety. They said the pins and needle feeling in my hands and feet was caused by anxiety. My eyes are beginning to really bother me. I see and Opthamalogist yearly but he has never done any thing but write me a prescription for glasses. Wouldn't he have caught optic neuritis when he examined my eyes in May?I have read the files. I keep telling my self that it could be any number of things wrong with me. I keep telling myself to relax and just wait and see. I have a long list of symptoms.The numbness in my feet has worsened. I fell on vacation because my left foot was so numb . I didn't feel the step when I put my foot down. All my weight went on my right foot and I heard a snap. My lower back feels like spasms going up and down my back and sometimes I can hardly stand the pain. At first the spasms came after standing in the kitchen when I tried to cook. Now they are more frequent. At times the bottom of my feet hurt so bad that I can hardly stand it. I have scars from 3rd degree burns on my hand and arms from burning my self on the stove and oven. I lay in bed at times and watch the muscles in my legs twitch. What really scares me is my eyes. As I write this, my left eye is twitching. I have strange light shows at times and just weird things that happen. My side vision will get blurry. At times I feel like there is a straight line of pain that runs from the center of my lower back down the center of my left leg. I get so tired. There are days that I feel like I am walking in quick sand. My legs and arms get so heavy. I use to have the memory of an elephant. My memory comes and goes with good days and bad days. These are the main symptoms. Last week, I tried a different Reumatologist hoping that I could get some answers. I thought it was fribromyalgia and restless leg syndrome.The new doctor ran his tests but on the very first visit, he said he thought I should see a neurologist. He ruled out Lupus. He said He believed that I have perepheral neurapathy. He also said that he felt something else was going on neurologically. He tried me on lyrica for pain. Couldn't take it. My hands swelled up and my bp went up. Went back and saw his nurse practioner for 3rd visit. She gave me a prescription for requip for restless leg syndrome. That kept me up all night. When I called her back, she said not to take it anymore.While in her office, she talked to me about the Dr's notes and that he wanted me to be referred to a neurologist. I started crying and I asked her what was he thinking. She said that they believe I have MS but that only an neurologist could diagnose that. They referred me to the only Neurologist that specializes in MS in my area. I am still waiting to hear from their office. The Ruemotologist did not refer me to an Opthamalogist. Are there ones that specialize in MS?My aunt called me when she heard. Her advice was to go get tested for Lead poisoning and west nile virust because according to her, the have the same symptoms. She thinks I should do that instead of going through the expensive MRI and the spinal tap. Could it be Lead poisoning or west nile? I am so exhausted and depressed that I can't think straight.Donna No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.19/953 - Release Date: 8/14/07 5:19 PM Quote Link to comment Share on other sites More sharing options...
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