Guest guest Posted August 30, 1999 Report Share Posted August 30, 1999 Welcome to the list Tina!!!!!!!!!!! In a message dated 8/29/99 6:37:40 PM Eastern Daylight Time, jtinae@... writes: << I am ready to do ATKINS, am prepared I think!!!! thank you tina >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 1999 Report Share Posted August 30, 1999 Hi Tina-- Welcome! Are you ready for today? Here's some advice and tips to get ya started.. Someone told me to do this and it really helped! -Hardboil alot of eggs.. do 18 of them! or 12! so they are on hand and ready it you need to munch! - make up a batch of chicken salad and/or tuna salad. This is great to have on hand also if you dont know what to eat or feel hungry take a few big bites! - chunked cheese! This is great! Buy it precut if needed. When you feel hungry eat a few pieces and it takes the hunger away! If you always have something on hand it will help. If you are hungry and have to take the time to cook something before eating you are more apt to eat something 'illegal' . Have a great first day! Mollie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 1999 Report Share Posted August 30, 1999 great with any kind of salsa - or cream cheese... I even made pork rind nachos one time...LOL now you got to be really bored to try that one...! Beverlee > > >Pork Rinds! LOL > > > > > > I craved something crispy and dry .... > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 1999 Report Share Posted August 31, 1999 Pork Rinds! LOL > > > I craved something crispy and dry .... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 1999 Report Share Posted September 16, 1999 Robin, welcome to the list! You are doing fantastic ... great weight loss. Yes, low carbing is the ONLY way to go ... we love it. Bev > > >Hi, I am a new member to this list and thought I would write a little >about myself. I have been following Atkins for about a month. Did great >up until Labor Dany and then gained 10 lbs. Started induction again and >have lost those 10lbs. Thank goodness. >Was doing WW until May and then just plateaued. Love this WOE and will >definatly be sticking with it now as I know it gets results. >Robin >272-March >245-start of Atkins on Aug 16 >235 as of today Sept 15 > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 1999 Report Share Posted September 16, 1999 Robin, Welcome to the list!! Hugs, Penny 173/160/130 Visit my family at: <A HREF= " http://www.geocities.com/heartland/pines/6116/wilson.html " > Home Page</A> <A HREF= " http://www.geocities.com/heartland/pines/6116/wilson.html " >http://www.ge ocities.com/heartland/pines/6116/wilson.html</A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 1999 Report Share Posted September 22, 1999 Kath, Welcome to the list!! Post away on those concoctions!!! we all love new recipes!!! Hugs, Penny 173/159/130 Visit my family at: ****<A HREF= " http://sites.netscape.net/pjwrww6/thewilsons " >Home Page</A>**** http://sites.netscape.net/pjwrww6/thewilsons A new updated site!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 1999 Report Share Posted September 22, 1999 In a message dated 9/22/99 11:56:16 AM Eastern Daylight Time, dkweaver@... writes: << Hi everyone.. My name is Kath and I am new member.. >> Hello and welcome Kath!!!!!!!!!! Tell us about some of your low carb concoctions!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 1999 Report Share Posted September 22, 1999 Kathy, Would love to hear some :-) > I love to cook so I have come up with some great concotions that are > low carb. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2000 Report Share Posted June 5, 2000 --- ESSacia@... wrote: > From: ESSacia@... > Date: Tue, 6 Jun 2000 00:44:11 EDT > Subject: New Member > To: cfparents-owneregroups > > Hi! > I just joined the list and wanted to introduce > myself. My name is > and I am the mother of 2 wonderful boys, , 3 > yrs. and Adam, 21 months. > Adam has CF. My younger sister, who had CF, passed > away when she was only > 18 months old. Because of the family history and > the genetic testing > available now, we received the diagnosis for Adam > while I was pregnant with > him. I had been a member of the Cystic-L list > during that time, but left > when I was close to my due date. > Adam had done great up until 2 weeks ago when we > received his first throat > culture positive for Pseudomonas. We have an > appointment to consult with our > Dr. at the CF clinic at the University of Iowa > tomorrow. The plan for Adam > is to begin a 3-week course of oral " Cipro " > (Ciprofloxacin sp?) and > Colistin (sp?) by nebulizer 3x/day. I'm very > interested to hear other's > experiences with Pseudomonas, treatments, > effectiveness, and how it's been > described to you that this impacts the overall > prognosis. > We had been told that Adam may have a milder form > based on his genotype and > the fact that he is pancreatic sufficient. > Obviously, I'm thinking this > finding, though in the early stages, puts him in a > more advanced category. > I've read some depressing figures on the > effectiveness of treating > Pseudomonas. Now I am most interested in meeting > people who have faced this > same challenge and to hear your stories. > Thank you for welcoming me to the group. I'm > looking forward to it! > Steph > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2000 Report Share Posted November 12, 2000 Welcome Janice. I live in Florida, have three children. My youngest daughter who is 3 has CF. She took ice skating lessons yesterday and did great! (obviously an indoor rink). Lori new member > Hi I'm Janice the mom of 3 girls a 10 yr old w/o cf and 7 yr old twins both > w/cf, we live in land. > _________________________________________________________________________ > Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. > > Share information about yourself, create your own public profile at > http://profiles.msn.com. > > > > *********************** > This is a secular list. > *********************** > > > PLEASE do not post religious emails to the list. > > > -------------------------------------------------- > > > 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. > > -------------------------------------------------- > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2000 Report Share Posted November 15, 2000 Welcome Mariska to you and your family. We hope you find a lot of support and friendship in the group. Amy Jo- Mom to Maegan 3.5m wcf and Tierney 2.5yrs wocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2000 Report Share Posted November 15, 2000 WELCOME.YOU " LL LOVE US ALL...............AND I KNOW IT WILL BE A GREAT TIME FOR YOU HERE ALSO. tell us more about your doc. and clinic practices too.I am a grandmom to a wonderful gal.......ERIN. who is 16yrs old.She is well and a big athlete in her school and home town in North Carolina...Write soon, Love & HUGS, GrandmomBEV new member Hi there. My name is Mariska mom of Isabel 2years 7 months wcf. Husband- Jaco. We live in Johannesburg, South Africa. Isabel is our first child and it came as quite a shock when we found out she had cf, as we don't have any family history of it. It has become a way of life now and she is doing all right although the " terrible-two " tantrums sometimes get us down. She is a very happy child who always has a smile ready for everyone. We're happy to join the parents group and hope we'll get to know all of you. [Non-text portions of this message have been removed] -------------------------- eGroups *********************** This is a secular list. *********************** PLEASE do not post religious emails to the list. -------------------------------------------------- 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. -------------------------------------------------- Our webpage is at http://www.eohio.net/malbright/cfparents.htm _________________________________________________ Post message: cfparentsegroups Subscribe: cfparents-subscribeegroups Unsubscribe: cfparents-unsubscribeegroups List owner: cfparents-owneregroups _________________________________________________ WE HAVE A CHAT PAGE!!! /chat/cfparents _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2000 Report Share Posted November 15, 2000 Welcome, Mariska (sp?), children and family; you will have a good time here, certainly, and so will we, being cyberspace neighbors! n Rojas wcf, mom of 3, 1 wcf, " kids " grown, some doubt about Salty Old Mom! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2000 Report Share Posted November 16, 2000 Hi Mariska, Welcome to our group ! We have a little girl, same age as your Isabel and live in Belgium. We also have no family history and were in complete shock when we found out. You'll find a lot of information on this list. We have visited South Africa and Johannesburg before was born. A very beautiful country ! Liesbeth, mom to (2,5 yrs wCF) and Kasper (1 woCF) > new member > > Hi there. > My name is Mariska mom of Isabel 2years 7 months wcf. Husband- Jaco. We > live in Johannesburg, South Africa. Isabel is our first child and it came > as quite a shock when we found out she had cf, as we don't have any family > history of it. It has become a way of life now and she is doing all right > although the " terrible-two " tantrums sometimes get us down. She is a very > happy child who always has a smile ready for everyone. > We're happy to join the parents group and hope we'll get to know all of > you. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2000 Report Share Posted November 16, 2000 hello janice, i am patty mom of 2 daughters withcf, they are 19 and 15 years old. welcome Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2000 Report Share Posted November 21, 2000 Hey there My granddaughter ERIN lives in Albemarle, N.C. it is outside of Charlotte. It is right on rt 52(that runs smack thru the city. )She goes to DUKE.it is 3 hours away.When she was born .an uncle was there as chief of cardio interns. and they felt that was a closer & better place to go with his being there ,etc.They are very pleased . Hope your enjoying the list. Glad your here. LOVE, grandmomBEV Re: new member Hello! My name is Jean. Usually just lurk, single mom to 2 kids-Dakota (8 almost 9) no CF and Maggie (3.5 years) with CF. Also work full time as a RN and getting ready to start school full time in Jan. So, lurking is all I manage to get done. Just a quick question to Grandma Bev......Where in NC does your granddaughter live? We live in Asheville (in the Western part of the state) and go to CF clinic at UNC-Chapel Hill. Has anyone out there had any problems with their little girls or little boys with CF having recurrent Urinary Tract Infections and urinary reflux from the bladder to the kidneys? Had a Urologist try to tell me it was related to the CF. NOT! Maggie has UTI's all the time. CF wise she does well except for the spring. We usually spend 1-2 hospitalizations and IV antibiotics for a month or two. So far, she has not cultured anything from her bronchs except H. Flu (that was just this past spring). Her height and weight are 50-75th percentile for her age! YEAH! She seems to have more problems related to her Asthma. So meds are Flovent, Pulmozyme (been on this since her diagnosis at age 6 months), pancrease MT 10 (when she decides she wants to take them), Claritin, Zantac, Reglan, ADEK Vitamins, and Albuterol nebs as she needs them. This med list has gotten much smaller only recently (she used to be on 15 meds a day, and most of them 2 and 3 times per day). She does have a vest but I think it aggravates her kidney and back pain. She is very active....sometimes too active for me. haha She does " exercise therapy " bought a trampoline, uses it bunches in the summer. But now that winter is coming on, she prefers Chest PT to the Vest. I really appreciate to wonderful information and experience that everyone has to offer. Welcome to all the new people! Sorry that this list is needed, but I am glad that it is here. Love to all! mom to Dakota, age 8, no CF but just finished his first book report in 3rd grade, and to Maggie, age 3 going on 30 with CF. *********************** This is a secular list. *********************** PLEASE do not post religious emails to the list. -------------------------------------------------- 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. -------------------------------------------------- Our webpage is at http://www.eohio.net/malbright/cfparents.htm _________________________________________________ Post message: cfparentsegroups Subscribe: cfparents-subscribeegroups Unsubscribe: cfparents-unsubscribeegroups List owner: cfparents-owneregroups _________________________________________________ WE HAVE A CHAT PAGE!!! /chat/cfparents _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2001 Report Share Posted January 21, 2001 , Welcome to you and your family. I'm and my son Jakob was born with bilateral clubfeet. Jakob will turn 3 in just less than 3 weeks and still wears his DBB at night. His doctor, Dr. Weinstein in Iowa, likes to keep the kids in the DBB as long as possible. As far as I know, Jakob is the oldest of the children on this list that has been treated with the Ponseti Method. You asked about a list of doctors that practice the Ponseti Method. You can can find a list at http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Physicians.html I don't see your son's doctor listed, but some aren't listed that I know do practice the Ponseti Method. Where in New Mexico do you live? My husband and I lived in Albuquerque for about 4 years before moving to Iowa City. waltmtz@... wrote: > Hello to All, We are new members to this group. We just recently > found out from our doctor that this site existed. We have a son who > is currently being treated for a clubfoot. He is progressing well, we > > believe, and are very hopefully that everything will go well. We > are in the stage of having his DDB removed and used only during the > night. As I was reading through some of the messages already posted, > I noticed that someone mentioned a listing of doctors who use the > Ponseti method. I wondered if someone could give me the address to > this site, I would like to see if my son's doctor is listed. Our > son's doctor's name is E. Schwend. He is located in the New > Mexico area. We are truly pleased with the care he has provided for > our son and would like to let others know that he uses the Ponseti > method as well. > > Also, we would like to let Joy know that one of the first websites we > visited when we learned of our sons clubfoot was Rose's Clubfoot > Webpage. This is where we learned about the Ponseti Method and we > interested in this for our son. We were fortunate to find a doctor in > > New Mexico who uses this method. > > That is all for now. We want to continue reading through some of the > messages. Also, is there anyone out there that has completed the usage > > of the DDB? We are curious what the time-period for the night-time > usage was. Our doctor tells us about 36 months of night-time use. > > We are glad to join this group. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2001 Report Share Posted January 21, 2001 , Hello and Welcome! Here is the web addy for the list of Ponseti Method Doctors. http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Physicians.html I can tell you that Dr. Schwend isn't on the list as of yet. I got the opportunity to meet your doctor in Iowa this last September and REALLY liked him. I even called him up a couple of months later to chat with him. My understanding is that he has been implementing Ponseti technique for a few years now but that he was not trained in Iowa until this last September. Dr. Ponseti tries to be very careful about whom he puts onto the list. It probably is a simple matter of Dr. Ponseti not being aware of Dr. Schwend (practicing his method) before Sept. For the doctors new to training, I would imagine that they need to be in contact with Dr. Ponseti so that he can make some judgement as to the success of that particular doctor. I don't know how many children Dr. Schwend has treated in NM with this method. I'm sure you could ask him. I would think it could take a doctor 6months to a year of practicing this method before having their name put onto the list. So, what I'm trying to say, is Dr. Schwend NOT being on the list is not necessarily a negative (in case you were thinking that). It simply means that Dr. Ponseti has not gotten enough information about Dr. Schwend's success with this technique to put him onto the list. Dr. Schwend knows Dr. Brown (who is on the list). From my impression of Dr. Schwend, I would have confidence in his desire to perfect this method and be willing to do whatever it would take to get it correct. Sounds like he's done a great job with your son! My daughter is 22 months old and still wearing the bar/shoes at nighttime. We were told that she would be in them for 2 1/2 to 3 years by Dr. Ponseti. My plan is to have her wear them for as long as we can. It is my feeling that the more severe the case is, the longer the child should probably wear the splints. From the studies that they did in Iowa, it seems that the more severe the childs feet were, the more likely they were to relapse after stopping use of the splint. Since recurrance is most common before 4 years of age, I figure I'm gonna keep Annika in the shoes until at least 3 years of age. Her case was not as severe as some, and I figure as long as it can't harm her to wear them a little longer, why not? I really want to avoid a relapse. If we could make it to 4 years of age, we just might do that. I'll be talking to Dr. Ponseti about that soon, I'm sure. Hope that was helpful to you...Glad you made it to our group! Tell Dr. Schwend thanks for sending you our direction! Lori & Annika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2001 Report Share Posted January 21, 2001 , Dr. Schwend was at the Ponseti method training clinic at the U of Iowa last september. It seems like he said that he had previously been near Buffalo NY and began learning about the Ponseti method while in Buffalo with a Dr. Armstrong. There is also another doctor at the U of New Mexico who has used the Ponseti method for about 25 years while he was in general orthopedic practice in Alaska. He is not in the pediatric orthopedic department there so most likely you will not run into him. As to your question about how long on the night time use of the DBB. I don't think that there are any parents here yet whose children are out of their use. I think that ultimately ending the use of the DBB depends when your doctor feels like there is not much if any risk of a relapse. I think that once the use of the DBB has been stopped, that if there is a relapse that it is then very difficult to get the children to reaccept the DBB's again. Welcome, we are glad to have someone from the Southwestern US as a resource for those who would like to use the Ponseti method in Albuquerque. and (3-17-99) > Hello to All, We are new members to this group. We just recently > found out from our doctor that this site existed. We have a son who > is currently being treated for a clubfoot. He is progressing well, we > believe, and are very hopefully that everything will go well. We > are in the stage of having his DDB removed and used only during the > night. As I was reading through some of the messages already posted, > I noticed that someone mentioned a listing of doctors who use the > Ponseti method. I wondered if someone could give me the address to > this site, I would like to see if my son's doctor is listed. Our > son's doctor's name is E. Schwend. He is located in the New > Mexico area. We are truly pleased with the care he has provided for > our son and would like to let others know that he uses the Ponseti > method as well. > > Also, we would like to let Joy know that one of the first websites we > visited when we learned of our sons clubfoot was Rose's Clubfoot > Webpage. This is where we learned about the Ponseti Method and we > interested in this for our son. We were fortunate to find a doctor in > New Mexico who uses this method. > > That is all for now. We want to continue reading through some of the > messages. Also, is there anyone out there that has completed the usage > of the DDB? We are curious what the time-period for the night-time > usage was. Our doctor tells us about 36 months of night-time use. > > We are glad to join this group. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2004 Report Share Posted March 4, 2004 Fiona, I cut the dairy out of my diet and it has worked very well for me. Specially with the UC. The stomach cramps stopped. I also reduced the intake of fat and I feel much better. Wheat, however, is still part of my diet. Regards, UC and PSC 2002 Monterrey, Mèxico New member Hi There, I have been reading your correspondance and have found it very helpful in learning about my newly diagnosed condition. I was diagnosed with UC in 2000 and PSC just last month(I am 30yrs old). After I was diagnosed I saw a Naturopath for some alternative therapy suggestions. He suggested I cut dairy and wheat products from my diet and avoid preservative 220 (sulpher dioxide). Has anyone had any success with speciallised diets and what sorts of things have been recommended to you? Also I am not symtomatice at the moment (PSC) but I know I have had abnomal LFT's for at least 5 yrs. How long (on average) does it take for symtoms to appear? Can someone describe what pruritus feels like? Regards, Fiona (Sydney, Australia) Find local movie times and trailers on Yahoo! Movies. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2004 Report Share Posted March 5, 2004 Hi well i was put off wheat and hasnt seemed to help with my upper abdominal pain, but it has helped slightly with joint pain. hope all is well with you terri(15) south africa New member Hi There, I have been reading your correspondance and have found it very helpful in learning about my newly diagnosed condition. I was diagnosed with UC in 2000 and PSC just last month(I am 30yrs old). After I was diagnosed I saw a Naturopath for some alternative therapy suggestions. He suggested I cut dairy and wheat products from my diet and avoid preservative 220 (sulpher dioxide). Has anyone had any success with speciallised diets and what sorts of things have been recommended to you? Also I am not symtomatice at the moment (PSC) but I know I have had abnomal LFT's for at least 5 yrs. How long (on average) does it take for symtoms to appear? Can someone describe what pruritus feels like? Regards, Fiona (Sydney, Australia) Find local movie times and trailers on Yahoo! Movies. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2004 Report Share Posted March 9, 2004 Hi everyone. I just found out about this group, through the liver transplant group. A little about me: I was diagnosed with PSC at age 1995, at age 17, right before I started college. Went on a couple of maintenence meds for a few years, not showing any symptoms externally. In January of 1999, I was contacted by a surgeon at UT-Memphis. They wanted to start a living donor liver program and wanted me to come talk with them about being the first receipient, since I was young and relatively healthy. So, March 23, 1999, my brother donated half of his liver to me. I had the usual in-and-out of the hospital recovery from the transplant, but have had wonderful liver health since. In 2002 I was diagnosed with Ulcerative Colitis. My doctor was puzzled that it showed up after the transplant, since it usually comes in conjuction with the PSC. But, liver numbers are still good, and UC has been in remission since being medicated. I am excited to find this group. I look forward to reading the posts, perusing the information and learning, and hopefully being able to give some input every now and then. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2004 Report Share Posted March 9, 2004 Welcome " nameless " new member! (Marc? Marci? Or am I not even close?) Congratulations to you and your generous brother on your successful living donor transplant. I see that you are coming up on your 5th anniversary. I am still waiting myself (at Duke)... Like you, I was relatively young when diagnosed with PSC in 1999. I was 24. I was previously diagnosed with Autoimmune Hepatitis. There is a folder of new member info accessible from the links section of the yahoo groups homepage. <http://health.groups.yahoo.com/group//links> I look forward to getting to know you better. Take Care, Shauna (Graduate Student, AIH'86, Crohns'95, PSC'99, listed@Duke, MELD=17) > Hi everyone. I just found out about this group, through the liver > transplant group. -- Talk to your family about organ donation http://www.shareyourlife.org/flash%20Coalition%20PSA.swf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 No he never has been a candidate for a liver transplant, I'm not sure why. At this stage his body couldn't cope with an operation. > Hi ; > > Welcome to the group, although I wish your Dad's health problems did > not have to bring you hear! I am very, very sorry to hear about your > Dad's health. I am sure that his doctor(s) would be able to give the > best advice to you on suitable sleep medications, recognizing that > your Dad probably has an impaired liver due to PSC. Presumably they > won't discharge him from the hospital until he has stopped vomiting, > and would probably only give him medications that would not trigger > recurrence of vomiting or cause further liver problems. I trust that > his doctors will be able to stabilize him soon. Has your Dad been > listed for a liver transplant? > > Best regards, > > Dave Quote Link to comment Share on other sites More sharing options...
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