Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 Welcome to the list !!! Sounds like you are off to a great start! In a message dated 8/17/99 1:08:11 PM Eastern Daylight Time, nbirschbach@... writes: << Hi - 195/185/150 My Name is . I am new to your list and new to the Atkins Diet. I started the Diet on 08/14/99 and have lost almost 10 lbs thus far. But the hearburn is killing me. I too felt last night like I was having a heart attack! Ugh! I glanced through some of the postings today and I think this will be a great group to join! I have a strong sense of humor and think I'll fit in well! I have a long way to go to get to my gaol wt. so I have to have lots of laughter! >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 - i was talking with sue earlier and told her of my heartburn.. she said its probably citric acid. are you drinking crystal lite or sprite or 7 up that could cause this? MOllie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 1999 Report Share Posted September 12, 1999 Well sorry that I haven't posted in a while, I have been very busy with school starting for my son, and I start again on the 20th of this month.. Oh the business of life... Well I have done great in my mind on the wol I have lost 20 lbs in 4 weeks.. thats a miricle... I have had a few bad days where I slipped up, but I just get right back in there. One day I accidentally grabbed my son's juice box instead of my soda well I drank 1/2 of it in one big gulp and that was enough to knock me clean out of ketosis... I was so mad...I did find that I made it back in much quicker the next time. We went to dinner last night and I'm not sure what was on the meat but it tasted sweet, I noticed then this morning that I was again out of ketosis, oh well I'm back on track today! I do have a question though, my friend has been on the wol for the induction period, and didn't cheat at all, she hasn't lost any weight... she then spent three days on the meat fast and still didn't loose any, she is drinking water like crazy, and is desprarate fr some help... any suggestions??? Thanks and sorry about such a long posting..... JULES Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2000 Report Share Posted May 14, 2000 Agnes - Welcome to the best CF list in cyberspace. We know how to get information and have fun too! Kathy G. (mom to 6 w/CF and 3 TODAY! no/CF) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2000 Report Share Posted August 14, 2000 Bonjour Nicolas, Welcome ! I hope you will find the information on this list helpful. I am from Belgium and have a daughter with CF of 2 years old. was diagnosed at the same age as Timothé and she is was also our first child, so I can imagine what you and Aurélia are going through. We had never heard about 'mucoviscidose' either. It was a complete surprise. Where in France do you live ? I just returned from holidays in Montpelier. We met a nurse who works independently and has a lot of adults with CF in good condition among her patients. has been in perfect condition for the last two years and I hope Timothé will do very well as well. Liesbeth mom to (2wCF) and Kasper (11 months woCF) > hello > > hello, > My name is Nicolas. I'm the father of Timothé, little baby of 4 > months 1/2. He's got the CF with a G542X mutation and an other non > identified mutation. As young parents, my wyfe ( aurélia )and I > were > not prepared for this and it was a huge bad surprise. We would be > very grateful to anybody for testimonies, advices... > For the moment timothe is in good health, but what for the future ? > thank you. > ( sorry for my english, I'm french) > > > > > > *********************** > 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 August 14, 2000 Report Share Posted August 14, 2000 PINELnicolas@... wrote: > > hello, > My name is Nicolas. I'm the father of Timothé, little baby of 4 > months 1/2. He's got the CF with a G542X mutation and an other non > identified mutation. As young parents, my wyfe ( aurélia )and I > were > not prepared for this and it was a huge bad surprise. We would be > very grateful to anybody for testimonies, advices... > For the moment timothe is in good health, but what for the future ? > thank you. > ( sorry for my english, I'm french) > Hi Nicolas!, and wellcome to this list. My name is o, I'm from Spain and the father of a 18 months old girl wcf, Sonsoles. She was diagnosed with CF when she was 4 1/2 months old... and since then, her health has been pretty well, despite of a cycle of IV antibiotics to treat an infection. Now, she's developing very well, and is a STUBBORN, intelligent, pretty, active, cheerful, sweet and HEALTHY (if we forget her CF...) 1 1/2 years old little girl... ;-). Sonsoles is our first child also, and I know " first-hand " what Aurélia and yourself are going through. CF is a very difficult issue to adjust to, but give time to time and you'll see how, with early diagnosis and treatment, things will go well (with your child's health, and of course, with yours and your wife's grieving also...). I know you will find helpful information on " cfparents " , it'll become in almost a reference for you in the day by day with CF. We all here, share the same concerns, so, if you need any kind of help, don't hesitate to ask, there's always somebody who knows the answer. Good luck!. o RamÃrez (dad of Sonsoles, 18 m.o. fwcf). mailto:rrm06@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2001 Report Share Posted May 7, 2001 Hi Hanelle and Avery, Great to see ya over here. Wishing you the best on Wedesday! Sara and Ivy 8/17/99 Hello > Hi everyone. I just joined this group, although I have been a member > of the clubfoot group. But since my daughter Avery is being treated > for clubfoot nonsurgically, I thought I'd check out this group. > > Avery is being treated by Dr. Dobbs at Shriner's in St. Louis > and she is doing great! In fact, we go back on Wednesday to do the > tenotomy. I can't believe that we were originally told that surgery > was the only way her feet could be corrected. Boy am I glad that I > did some reasearch on the subject. > > Anyway, I have some reading to do. In a few weeks, Avery will be in > the DBB so I want to read about that and learn what to expect. > Thanks for posting and sharing your stories. > > Janelle and Avery (3/16/01) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2001 Report Share Posted September 15, 2001 Did Dr. Herzenberg do the first tenotmy? Jody Hello I have been a lurker for quite a while now. I figured it was about time to get active in the group. My name is Bonnie, and I am 28 years old. My husband is Jack, we have been married for 9 years. We also have 3 sons, Zachary,8, ,3, and Dylan,10 1/2 months. We live in Fredericksburg, VA. Dylan was born with bilateral clubfeet. We began treatment with a doctor in Richmond that said she was using the Ponseti method,but after 11 casts, we contacted doctor Ponseti, and he referred us to Dr. Herzenberg. We began treatment in the Ponseti method in February. So far we have been very pleased with Dr. Herzenberg. Of course, I do have a question for you all. LOL. Has anyone here ever had to have a second tenotomy done? We went to Dr. Herzenberg yesterday for a follow up appt. Dylan has been in the DBB since march, and only part time since June. His left foot has always been a little tighter than his right. Yesterday Dr. Herzenberg could barely bend it upwards at all. So, he felt it was wise to recast Dylan. He feels he may need to have 1-2 more castings and there is a 50/50 chance he may need a second tenotomy on his left foot. Has this ever happened to anyone else? I am totally unprepared for this, and not quite sure what to expect. Dylan, needless to say, is NOT happy about the casts AT ALL. Thanks! Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 , Good to Quote Link to comment Share on other sites More sharing options...
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Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 Cheryl, I'm sorry to hear about your sister! It is certainly a trying time, and the healing is not a quick process, but I know that it does come. Taking care of my mother for 5 mo. I found, like you, that it was a very sobering experience...watching the fate of cirrhosis engulfing her body. It also proved to be very difficult for my 20 year old daughter, who couldn't seem to escape the reality of my situation. She told me she would look at my mom and see me there. Very scary for her! She is lucky to have her faith and tries to live by the Serenity Prayer. As far as my health...I had a bout of cholangitis, starting about 6 wks. ago, and it took nearly 4 to get over. I had some new pains and such, also, which prompted an MRCP and an ultrasound. As it turns out things have gotten much worse since my last ERCP (done 3/26/04). According to the report my left lobe is not looking well at all, and neither is my pancreas. This is the fastest things have deteriorated since I was diagnosed in 1984. I saw the transplant team 4/04 and we discussed a pancreas tx as well. He tells me that I can live several years after my pancreas 'burns out'. (I told him if I were 70 that may sound like a bargain, but at my age...I'm feeling like I might be getting short changed. ) He said he would like to hold off on a pancreas tx as long as possible because they are having such success with islets these days, and believes that the longer we wait the greater the chance that we can do something other than a tx to 'fix' the problem. (My docs tell me that they do not have any other patients who's pancreas is involved in the PSC process. Is there anyone else out there that has experienced this?) I see the doc today (not tx team) at four to decide our plan of action. I know that he wants my gall bladder removed, but I am not sure if he will go in and do sphincterotomies again so soon. (I have never needed them done this close together before.) I'm sure the stress in my life has complicated things; I'm not sure how it couldn't. I took two days and stayed in a hotel in IL and spent a lot of time by the lake there, and did a lot of reading and writing. I had less pain, and took less compazine than I had in 2 mo. That tells me there is some correlation between stress and ailment. My solution...go on a permanent vacation! I know that you probably covered your history when you first entered the group so I apologize for asking you to repeat yourself. But...I see you were diagnosed in '01. How have you been holding up since that time? How are you currently? I am always interested in other's experiences as this disease is so diverse in so many ways. Missouri PSC & UC '84, chronic pancreatitis '97 Quote Link to comment Share on other sites More sharing options...
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