Guest guest Posted June 26, 2003 Report Share Posted June 26, 2003 Hi , I live near Springfield Illinois. What CF clinic does Lexie go to? My husband and I used to camp at Lake Shelbyville years ago, long before Zachary. I understand your frustration with non-cf parents. They are caring and sweet, but it is like we are speaking a foreign language to them. Sometimes they just don't get it. This group is a huge source of information and comfort. Welcome! Sara - mommy to Zach 16 months > My name is and I am the mother of Lexie, almost 9, with CF. > She takes TOBI, vest therapy twice a day, albuterol and cromolyn > twice a day, Sporanox, Zantac, Zyrtec, and of course enzymes > (Lipram). I think I am still in denial about her CF sometimes, but > after reading this board I am getting a huge wake-up call. I just > wish we could be normal -- not having to take machines > everywhere, " have you taken your enzymes " , etc., etc. Lexie actually > does very well, although it seems like when she is off TOBI for 28 > days she gets a cold or something. I am a medical transcriptionist > who works at home so at least I am here with her. I guess I am just > feeling overwhelmed like everyone else and need to vent to people who > might understand. Non-CF parents try, but they don't really know. I > guess because for the most part I try to be cheery about everything. > I am rambling. I just want to introduce myself and become a part of > the board. > > -- Findlay, Illinois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2003 Report Share Posted June 26, 2003 Sara, Thanks for the welcome. We actually go to clinic right there in Springfield. I have debated taking Lexie to St. Louis. We started out at Riley Children's Hospital in Indianapolis when we lived in Danville when she was diagnosed at 5 months. So far, though, we are fine with Springfield and she is maintaining well. I hope to find a lot of helpful info about CF on this board and maybe even a little sanity for myself as well! Thanks again. > > My name is and I am the mother of Lexie, almost 9, with > CF. > > She takes TOBI, vest therapy twice a day, albuterol and cromolyn > > twice a day, Sporanox, Zantac, Zyrtec, and of course enzymes > > (Lipram). I think I am still in denial about her CF sometimes, > but > > after reading this board I am getting a huge wake-up call. I just > > wish we could be normal -- not having to take machines > > everywhere, " have you taken your enzymes " , etc., etc. Lexie > actually > > does very well, although it seems like when she is off TOBI for 28 > > days she gets a cold or something. I am a medical > transcriptionist > > who works at home so at least I am here with her. I guess I am > just > > feeling overwhelmed like everyone else and need to vent to people > who > > might understand. Non-CF parents try, but they don't really > know. I > > guess because for the most part I try to be cheery about > everything. > > I am rambling. I just want to introduce myself and become a part > of > > the board. > > > > -- Findlay, Illinois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2003 Report Share Posted June 26, 2003 How do you like Dr. Eagleton? He did not seem to handle Zach very well. He seems uneasy with babies, so we go to Cardinal Glennon in St Louis. I know of another mother whose daughter is 6 who uses Springfield and is fine with Eagleton. If you have any questions about CG you can let me know. I also know of a parent who uses St Louis Children's Hospital and another mom who uses the cf clinic in Champaign. They all seem pleased with the care their children have received. > Sara, > > Thanks for the welcome. We actually go to clinic right there in > Springfield. I have debated taking Lexie to St. Louis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2003 Report Share Posted June 26, 2003 I have mixed feelings. I can call the nurses when I feel Lexie is coming down with something and he's right on it. We don't even have to go in, he just calls in a script. I did, however, have to ask him about some tests that I thought she might need and he agreed with me. I guess we have to be on our toes when it comes to CF so we know what questions to ask. They have a nutritionist on staff and the nurse, Joni, is absolutely wonderful. I can e-mail her when we need meds or anything. I still wonder, though, if we would learn anything new or maybe participate in clinical trials by going to St. Louis. Tell me about your doctor there. I know three mothers in Shelbyville that take their kids to St. Louis. I also know of another who goes to Springfield for three-month visits and once a year goes to St. Louis. I think she has five children, two with CF. > > Sara, > > > > Thanks for the welcome. We actually go to clinic right there in > > Springfield. I have debated taking Lexie to St. Louis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2003 Report Share Posted June 26, 2003 I know what you mean about mixed feelings. I really like Dr Albers at CG and Judy the CF Coordinator is great. They will also phone in scripts if needed. I can e-mail Dr Albers directly if I need to. He will talk to us for hours about CF and answer every question, no matter how silly. However, I wonder if they are being aggressive enough. Zach seems really healthy, but his digestion is the pits. We just keep increasing his enzymes, but he hasn't gained an ounce in a while. His lungs are clear and he has only had 3 ear infections. We have been really lucky, so I wonder if I should just chill out about it. I also just met a father whose daughter goes to a different clinic in St Louis and she has not been hospitalized since she was 2 months old and she is now 15 years old! Another mother that uses CG has a 14 year old son and he is in the hospital for at least a week every year. There could be many reasons for this, but I wonder if the clinic care plays a role? I guess we just have to try to stay informed and hope for the best. Sara > > > Sara, > > > > > > Thanks for the welcome. We actually go to clinic right there in > > > Springfield. I have debated taking Lexie to St. Louis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2003 Report Share Posted June 26, 2003 Welcome ! My daughter, , is 4 & 1/2 and takes a lot of the same things your daughter does. Feel free to visit our site at http://groups.msn.com/teamJane Vent away we understand. New to board My name is and I am the mother of Lexie, almost 9, with CF. She takes TOBI, vest therapy twice a day, albuterol and cromolyn twice a day, Sporanox, Zantac, Zyrtec, and of course enzymes (Lipram). I think I am still in denial about her CF sometimes, but after reading this board I am getting a huge wake-up call. I just wish we could be normal -- not having to take machines everywhere, " have you taken your enzymes " , etc., etc. Lexie actually does very well, although it seems like when she is off TOBI for 28 days she gets a cold or something. I am a medical transcriptionist who works at home so at least I am here with her. I guess I am just feeling overwhelmed like everyone else and need to vent to people who might understand. Non-CF parents try, but they don't really know. I guess because for the most part I try to be cheery about everything. I am rambling. I just want to introduce myself and become a part of the board. -- Findlay, Illinois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2003 Report Share Posted June 29, 2003 Hi , We got to Cardinal Glennon Children's Hospital in St Louis. It is a two hour drive for Zach's appointments, but we think it is worth it. The Springfield doc did not handle Zach being a baby very well. Now Zach sees a pediatric pulmonologist in St Louis who deals only with kids. Hope is doing well. We just had Zach weighed and he is 21 pounds at 16 months. We are having trouble getting him to gain weight? Any ideas? We are testing out our theory that he may be lactose intolerant since we have had him on whole milk, cheese, etc. since his diagnosis and his bowel movements and gas have not improved. I am trying pediasure this week instead of whole milk to see if it makes any difference. Unfortunately, lactose free whole milk is not sold anywhere in my small town, so I am using pediasure instead. Thanks for introducing yourself! Sara - mommy to Zach 16 months wcf > > > My name is and I am the mother of Lexie, almost 9, with > > CF. > > > She takes TOBI, vest therapy twice a day, albuterol and cromolyn > > > twice a day, Sporanox, Zantac, Zyrtec, and of course enzymes > > > (Lipram). I think I am still in denial about her CF sometimes, > > but > > > after reading this board I am getting a huge wake-up call. I just > > > wish we could be normal -- not having to take machines > > > everywhere, " have you taken your enzymes " , etc., etc. Lexie > > actually > > > does very well, although it seems like when she is off TOBI for 28 > > > days she gets a cold or something. I am a medical > > transcriptionist > > > who works at home so at least I am here with her. I guess I am > > just > > > feeling overwhelmed like everyone else and need to vent to people > > who > > > might understand. Non-CF parents try, but they don't really > > know. I > > > guess because for the most part I try to be cheery about > > everything. > > > I am rambling. I just want to introduce myself and become a part > > of > > > the board. > > > > > > -- Findlay, Illinois > > > > > > > > ------------------------------------------- > > The opinions and information exchanged on this list should IN NO WAY > > be construed as medical advice. > > > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > TREATMENTS. > > > > ------------------------------------ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2003 Report Share Posted June 29, 2003 Is 21 pounds at 16 months, too little? Can he eat yogurt or does that have lactose in it? Gale > > > > My name is and I am the mother of Lexie, almost 9, with > > > CF. > > > > She takes TOBI, vest therapy twice a day, albuterol and > cromolyn > > > > twice a day, Sporanox, Zantac, Zyrtec, and of course enzymes > > > > (Lipram). I think I am still in denial about her CF sometimes, > > > but > > > > after reading this board I am getting a huge wake-up call. I > just > > > > wish we could be normal -- not having to take machines > > > > everywhere, " have you taken your enzymes " , etc., etc. Lexie > > > actually > > > > does very well, although it seems like when she is off TOBI > for 28 > > > > days she gets a cold or something. I am a medical > > > transcriptionist > > > > who works at home so at least I am here with her. I guess I am > > > just > > > > feeling overwhelmed like everyone else and need to vent to > people > > > who > > > > might understand. Non-CF parents try, but they don't really > > > know. I > > > > guess because for the most part I try to be cheery about > > > everything. > > > > I am rambling. I just want to introduce myself and become a > part > > > of > > > > the board. > > > > > > > > -- Findlay, Illinois > > > > > > > > > > > > ------------------------------------------- > > > The opinions and information exchanged on this list should IN NO > WAY > > > be construed as medical advice. > > > > > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > > TREATMENTS. > > > > > > ------------------------------------ > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Hi Gale, Zach is in the 3rd percentile for weight and 10th percentile for height. I guess I think Zach is small because his 7 month old cousin is 22 pounds already. I compare apples and oranges sometimes and forget I should be making lemonade from lemons. As for the lactose intolerance, we are eliminating all dairy except pediasure. We are still giving him high fat, high calorie foods, but without dairy products. If he does not seem better in a week or so, we will know the dairy was not the issue. Sara > > Hi , > > We got to Cardinal Glennon Children's Hospital in St Louis. It is > a > > two hour drive for Zach's appointments, but we think it is worth > > it. The Springfield doc did not handle Zach being a baby very well. > > Now Zach sees a pediatric pulmonologist in St Louis who deals only > > with kids. > > Hope is doing well. We just had Zach weighed and he is 21 > > pounds at 16 months. We are having trouble getting him to gain > > weight? Any ideas? We are testing out our theory that he may be > > lactose intolerant since we have had him on whole milk, cheese, > etc. > > since his diagnosis and his bowel movements and gas have not > > improved. I am trying pediasure this week instead of whole milk to > > see if it makes any difference. Unfortunately, lactose free whole > > milk is not sold anywhere in my small town, so I am using pediasure > > instead. > > Thanks for introducing yourself! > > Sara - mommy to Zach 16 months wcf > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Oh my gosh! Zach's cousin is big. I'll bet that he's fun to hug. Zach doesn't sound too little to me. Abby is 18 months old and weighs 23 pounds. The doctors are really pleased with her weight. She's in the 25th percentile. Maybe there's a different scale for boys and girls. It sounds like you are doing an excellent job with Zach. Take care, Gale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Hi, When my son was a baby he developed lactose intolerance. Instead of eliminating dairy, we used drops called " Lactaid " (I think) in his milk, yogurt, etc. It worked well and he has no intolerance any longer, I guess he out grew it. It may be worth a try. Kelli > > > Hi , > > > We got to Cardinal Glennon Children's Hospital in St Louis. It > is > > a > > > two hour drive for Zach's appointments, but we think it is worth > > > it. The Springfield doc did not handle Zach being a baby very > well. > > > Now Zach sees a pediatric pulmonologist in St Louis who deals > only > > > with kids. > > > Hope is doing well. We just had Zach weighed and he is 21 > > > pounds at 16 months. We are having trouble getting him to gain > > > weight? Any ideas? We are testing out our theory that he may > be > > > lactose intolerant since we have had him on whole milk, cheese, > > etc. > > > since his diagnosis and his bowel movements and gas have not > > > improved. I am trying pediasure this week instead of whole milk > to > > > see if it makes any difference. Unfortunately, lactose free > whole > > > milk is not sold anywhere in my small town, so I am using > pediasure > > > instead. > > > Thanks for introducing yourself! > > > Sara - mommy to Zach 16 months wcf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2003 Report Share Posted July 8, 2003 Hi - If you want to e-mail me privately I'll will take some time to talk to you about CF issues with 9 year olds. My daughter was identified at age 3.5. It has always been a struggle for me. Kajegood@... - Katrhy G. Hope to hear from you soon. New to board > My name is and I am the mother of Lexie, almost 9, with CF. > She takes TOBI, vest therapy twice a day, albuterol and cromolyn > twice a day, Sporanox, Zantac, Zyrtec, and of course enzymes > (Lipram). I think I am still in denial about her CF sometimes, but > after reading this board I am getting a huge wake-up call. I just > wish we could be normal -- not having to take machines > everywhere, " have you taken your enzymes " , etc., etc. Lexie actually > does very well, although it seems like when she is off TOBI for 28 > days she gets a cold or something. I am a medical transcriptionist > who works at home so at least I am here with her. I guess I am just > feeling overwhelmed like everyone else and need to vent to people who > might understand. Non-CF parents try, but they don't really know. I > guess because for the most part I try to be cheery about everything. > I am rambling. I just want to introduce myself and become a part of > the board. > > -- Findlay, Illinois > > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2003 Report Share Posted July 8, 2003 You can e-mail me too....My daughter will be 13 and was diagnosed at 6!! She has been a horror - fights me on everything....... Rosemary in NY with 3 children (12, 10 and 6) with CF. I have a dog named TOBI and coined the phrase " BREATHE DAMMIT " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2006 Report Share Posted April 23, 2006 Hi Lavon, welcome to our group. If you want to check the back messages you do have to go to the group web site in order to do that. As for the email It depends on hoe you se your membership up when you joined this group if you said that you wanted email sent to your email address you will get them sent to you every time someone posts the only thing about that is there can be up to a hundred a day. I know because I go through just about everyone everyday. Otherwise you can have just a summary sent to you everyday or you can have no email sent and just go to the group site and read them there. Either way you are way ahead of the game just by joining this wonderful group. Feel free to ask as many questions as you need to. If your question doesn't get a response the first time, ask again because sometimes it can get missed by accident. Once again welcome Ramona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2006 Report Share Posted April 23, 2006 Colleen which way do you do for the board ?? do you have them sent to you??? Can you go to the Yahoo board and read them without them being mailed to you??? lavon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2006 Report Share Posted April 23, 2006 Thank you Ramona for you help I think I will go no mail and just go to the website and read them. I'm scared I can't handle that much mail each day. lavon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2006 Report Share Posted April 23, 2006 Hi Lavon Welcome ! I live in Vacaville and had my surgery in South San Francisco with Dr Gorrin and Dr Umbach that both left recently and moved to Oregon. I think you have the option on the group page to select if you want the letters to automatically come to your email individually or as a daily post to scroll through them or you can read them individaully i think on the group page. Good luck on your journey, I hope that you enjoy it and that it works out well for you ! ColleenLavon wrote: Hi My name is Lavon and I'm new to the board. Not sure how it works so maybe someone can tell me how to read or find the messages????Do they send them to your mailbox or do I come here to read them???I started the process in October of 2004 with my PCP and got my letter of approval in March 2005 then my orientation date in July 2005 finished all of my meeting in KSSF and got my surgery date May 18th 2006. Excited and nervous too as I know it will be anew life style change for me and my family.Had my Pre Op class last Friday in SSF. I will have Dr. Li doing my surgery. I really like him and have heard alot of good things about him.One of the nurses at the meeting Friday told us about this message board and how she highly recommended it.Hope to learn alot of new information and how to use this board.I live in Acampo which is about 30 miles south of Sacramento and 7 miles north of Lodi. Just alittle country town. lolLavon Colleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2006 Report Share Posted April 23, 2006 I would log into the group, go to "edit membership" and click "get e-mails" because when I go "no e-mail" I forget to check in and look! Just a suggestion. Congrats on the surgery date! Yipee! Scary & Exciting at the same time! We are all here for you! Love, Jenn Orientation: 4-19-2005 Surgery: ? Lavon wrote: Hi My name is Lavon and I'm new to the board. Not sure how it works so maybe someone can tell me how to read or find the messages????Do they send them to your mailbox or do I come here to read them???I started the process in October of 2004 with my PCP and got my letter of approval in March 2005 then my orientation date in July 2005 finished all of my meeting in KSSF and got my surgery date May 18th 2006. Excited and nervous too as I know it will be anew life style change for me and my family.Had my Pre Op class last Friday in SSF. I will have Dr. Li doing my surgery. I really like him and have heard alot of good things about him.One of the nurses at the meeting Friday told us about this message board and how she highly recommended it.Hope to learn alot of new information and how to use this board.I live in Acampo which is about 30 miles south of Sacramento and 7 miles north of Lodi. Just alittle country town. lolLavon Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.