Guest guest Posted October 18, 2000 Report Share Posted October 18, 2000 FYI: is not behind this. Dr Rutledge is the moderator and has restricted the group. He has taken away ALL previous posts and they will no longer be available to read from E-Groups. I do have to say that does NOT impress me and makes me want to question his motive. --- alivingston2000@... wrote: > I am not being able to access the posts and read > them. It's driving > me crazy! This started last night. I have e-mailed > the group for > tech. assistance. I also received an e-mail from > $#%^^ you know > who!! I think she is behind this! if you are > reading this: > > I AM PRAYING FOR YOU! > DO NOT E-MAIL ME AGAIN! > > Everyone else if you read this post, please e-mail > me at > alivingston2000@.... to let me know that at > least you can read > my posts. I am concerned about Cindy and sent her a > post last night. > CINDY - if you need me e-mail me privately at the > above e-mail > address or indrel@...! > > Thanks > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2000 Report Share Posted October 18, 2000 My question , is how do YOU know this? Trudy (concerned) Re: HELP! FYI: is not behind this. Dr Rutledge is the moderator and has restricted the group. He has taken away ALL previous posts and they will no longer be available to read from E-Groups. I do have to say that does NOT impress me and makes me want to question his motive. --- alivingston2000@... wrote: > I am not being able to access the posts and read > them. It's driving > me crazy! This started last night. I have e-mailed > the group for > tech. assistance. I also received an e-mail from > $#%^^ you know > who!! I think she is behind this! if you are > reading this: > > I AM PRAYING FOR YOU! > DO NOT E-MAIL ME AGAIN! > > Everyone else if you read this post, please e-mail > me at > alivingston2000@.... to let me know that at > least you can read > my posts. I am concerned about Cindy and sent her a > post last night. > CINDY - if you need me e-mail me privately at the > above e-mail > address or indrel@...! > > Thanks > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2000 Report Share Posted October 18, 2000 coming thru loud and clear. Phyllis alivingston2000@... wrote: > I am not being able to access the posts and read them. It's driving > me crazy! This started last night. I have e-mailed the group for > tech. assistance. I also received an e-mail from $#%^^ you know > who!! I think she is behind this! if you are reading this: > > I AM PRAYING FOR YOU! > DO NOT E-MAIL ME AGAIN! > > Everyone else if you read this post, please e-mail me at > alivingston2000@.... to let me know that at least you can read > my posts. I am concerned about Cindy and sent her a post last night. > CINDY - if you need me e-mail me privately at the above e-mail > address or indrel@...! > > Thanks > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2000 Report Share Posted October 31, 2000 , Everything you need is in your manual, including the complete address. Take a breath, girlfriend! Jude Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2000 Report Share Posted October 31, 2000 Whatever you do make sure you can check on where your mail is with a trackin number I sent mine UPS cause they had tracking that you could do online. hugs marg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2000 Report Share Posted October 31, 2000 I am fixing to mail off my packet also and was wondering how did everyone else send in there packet...Fed ex, overnight, priority...??? Thanks Robin At 04:50 PM 10/31/00 -0000, you wrote: >I MAILED MY PACKET LAST FRIDAY. I FOUND OUT TODAY THAT THE ADDRESS I >USED WAS NOT ENOUGH INFORMATION?@#$$#@@@! I SENT IT TO: > >DR. ROBERT RUTLEDGE, MD >4301 BEN FRANKLIN BLVD. >DURHAM, NC 22704 > >IS THERE A SUITE NUMBER OF SOME OTHER NAME FOR HIS PRACTICE? >EMAIL ME AT alivingston2000@.... > >THANKS >ANGELA > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2000 Report Share Posted October 31, 2000 I sent mine Express Mail. Seems no magic as to how you send it. Re: HELP! I am fixing to mail off my packet also and was wondering how did everyone else send in there packet...Fed ex, overnight, priority...??? Thanks Robin At 04:50 PM 10/31/00 -0000, you wrote: >I MAILED MY PACKET LAST FRIDAY. I FOUND OUT TODAY THAT THE ADDRESS I >USED WAS NOT ENOUGH INFORMATION?@#$$#@@@! I SENT IT TO: > >DR. ROBERT RUTLEDGE, MD >4301 BEN FRANKLIN BLVD. >DURHAM, NC 22704 > >IS THERE A SUITE NUMBER OF SOME OTHER NAME FOR HIS PRACTICE? >EMAIL ME AT alivingston2000@.... > >THANKS >ANGELA > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2000 Report Share Posted October 31, 2000 I found out that you have to put " Regional Surgical Assoc. " on the line after the Drs name if you sent it ups. --- mpowell6@... wrote: > Robin: I sent mine Fed Ex but it was very expensive > and others got just as > good service from Priority mail. I live in a spot > in Florida and to send > mine there it cost $31.00, I think, I went ahead > and sent it anyway because > I was tired of the hastle. It cost way too much. > Phyllis > > Robin wrote: > > > I am fixing to mail off my packet also and was > wondering how did everyone > > else send in there packet...Fed ex, overnight, > priority...??? > > Thanks > > Robin > > > > At 04:50 PM 10/31/00 -0000, you wrote: > > >I MAILED MY PACKET LAST FRIDAY. I FOUND OUT > TODAY THAT THE ADDRESS I > > >USED WAS NOT ENOUGH INFORMATION?@#$$#@@@! I SENT > IT TO: > > > > > >DR. ROBERT RUTLEDGE, MD > > >4301 BEN FRANKLIN BLVD. > > >DURHAM, NC 22704 > > > > > >IS THERE A SUITE NUMBER OF SOME OTHER NAME FOR > HIS PRACTICE? > > >EMAIL ME AT alivingston2000@.... > > > > > >THANKS > > >ANGELA > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2000 Report Share Posted October 31, 2000 Robin: I sent mine Fed Ex but it was very expensive and others got just as good service from Priority mail. I live in a spot in Florida and to send mine there it cost $31.00, I think, I went ahead and sent it anyway because I was tired of the hastle. It cost way too much. Phyllis Robin wrote: > I am fixing to mail off my packet also and was wondering how did everyone > else send in there packet...Fed ex, overnight, priority...??? > Thanks > Robin > > At 04:50 PM 10/31/00 -0000, you wrote: > >I MAILED MY PACKET LAST FRIDAY. I FOUND OUT TODAY THAT THE ADDRESS I > >USED WAS NOT ENOUGH INFORMATION?@#$$#@@@! I SENT IT TO: > > > >DR. ROBERT RUTLEDGE, MD > >4301 BEN FRANKLIN BLVD. > >DURHAM, NC 22704 > > > >IS THERE A SUITE NUMBER OF SOME OTHER NAME FOR HIS PRACTICE? > >EMAIL ME AT alivingston2000@.... > > > >THANKS > >ANGELA > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2000 Report Share Posted November 6, 2000 Ummm honey......you are still pre-op........go get a stiff drink or three or four! =) Wait Wait I think there is an airstrip near Durham. Call and order a sky writer to fly over Dr. R's office and write in huge letters: Surrender Barbara! Ok ok just kidding and I should be ashamed! I remember when I was waiting for my approval and how frustrating it was. The last thing I needed was a smart@ssed post-op making light of my frustration. The only thing I know to do is to email them. Good Luck Sweetie! Signed: BethBNBad again in Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2000 Report Share Posted November 6, 2000 Beth, Well, if I was still a drinking women, I might do that!! Maybe I could do a rain dance and pray for a lightening bolt that spells out: CALL ANGELA OR SHE IS GOING TO KILL HERSELF! Just Kidding, LOL Practice for the real Dance --- TooEnable@... wrote: > Ummm honey......you are still > pre-op........go get a stiff drink or > three or four! =) > Wait Wait I think there is an airstrip near Durham. > Call and order a sky > writer to fly over Dr. R's office and write in huge > letters: Surrender > Barbara! > > Ok ok just kidding and I should be ashamed! I > remember when I was waiting > for my approval and how frustrating it was. The > last thing I needed was a > smart@ssed post-op making light of my frustration. > > The only thing I know to do is to email them. Good > Luck Sweetie! > > Signed: > BethBNBad again in Florida > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2000 Report Share Posted November 6, 2000 OOPS, that is 19194791741 not the other way... sorry...... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2000 Report Share Posted November 10, 2000 Sorry you got problems with your Pcp Robin, but keep your chin up and get what he needs, believe me it is worth it in the end.. Trudy Re: Help! Well you and I seem to be in the same boat ....but at least you finally heard something. I have to get another PCP do the paper work right because mine left town all of a sudden....isnt that just great??? Robin At 01:01 PM 11/10/00 -0000, you wrote: >Well, I just received an email from Dr. R. saying that I have been >rejected. I was rejected because he needs further medical information. >I'm dealing with it...but I am very very disappointed! > >Tired of Being Obese in Ohio > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 My daughter is on Ultrase, she is almost 15 months, we dip our finger in applesauce or milk and then into the beads and put them in her mouth on her tongue. I usually follow this with something to drink or eat. We've been doing it since day 1, it was the way they told us to do it with breastfeeding. Sometimes she'll take them on a spoon if I put them in something she really likes and give her a bite first without any enzymes. I also try to distract her so she doesn't see me open the capsules and dump them out. Good luck, hope this helps! Mom to Ellie 14mo wCF and Jack 3 yrs no CF HELP! I am open for ANY AND ALL suggestions, tips, advice, etc on getting my daughters enzymes in her. She is 18 months, and her doc just recently changed her from Creon 10 (which we could just put through her button) to Ultrase MT-12 (which will not go through her button). When I mix them with ANYTHING, she pushes the beads out with her tongue. I am about ready to pull my hair out, HELP!!!!!!!!!! Katy Mom to Austin 4 no CF & Piper 18 months w/CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2004 Report Share Posted January 31, 2004 Hi Katy, I will tell you what we did, as my daughter when first diagnosed refused to be spoon fed. Can your daughter eat Cheerios? Mine liked them, along with other small finger foods. We would take the enzyme and mix the beads with jelly (we used grape, no chunks) and filled Cheerios with the jelly/enzyme mix. She didn't really chew them so it didn't break down the enzymes. With an older child with teeth this might not work so well but you could give it a try. People have also used ice cream, yogurt, even ketchup, maybe that would work since she wouldn't be expecting it. Try something that is a treat she only gets when she takes her enzymes. I hope this helps!! I remember how frustrating it was. love, M mom of age 20 wcf and Nick age 21 nocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2004 Report Share Posted January 31, 2004 If Liam doesnt have his enzymesI tell him he is going to his room, or bed, or get a smack, I know its not the bes but it works. We dont have trouble generally HELP! > > I am open for ANY AND ALL suggestions, tips, advice, etc on getting my > daughters enzymes in her. She is 18 months, and her doc just recently > changed her from Creon 10 (which we could just put through her button) > to Ultrase MT-12 (which will not go through her button). When I mix > them with ANYTHING, she pushes the beads out with her tongue. I am > about ready to pull my hair out, HELP!!!!!!!!!! > > > Katy > Mom to Austin 4 no CF & Piper 18 months w/CF > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Since my son wasn't diagnosed until age 4.4 years, I can only imagine how difficult it must be to get enzymes into babies and toddlers, especially if they have a sensitive palate. We were lucky that was so complacent. When he started taking enzymes, he only took one Pancrease capsule per meal. We'd open the capsule and he'd tilt his head back a bit, and we'd just dump the beads into his mouth, followed by milk (because milk is what the kids drank at every meal). I'm curious why your doctor switched Piper from Creon 10 to Ultrase MT-12. Did the Creon 10 work well for her? (or perhaps, like so many doctors do without telling the parents, they switch to Ultrase so the patient can get free Scandishakes or ADEKs). If the Creon 10 went into her tube easily, yet didn't work well for her malabsorption issues, then maybe that's why the doctor switched. Why didn't the doctor bump up to the next higer dose of Creon (not necessarily " more " enzymes, but a Creon capsule with higher lipase). Or... why not go back to the Creon 10 but this time crush some taurine tablets and add it to the tube too. One of the things taurine is necessary for is for manufacturing bile salts to ensure proper emulsification and absorption of fats. Pwcf are low in taurine. Pwcf are low in sulphur too, and sulphur is also a necessary amino acid for absorption of fats. There are many people who've seen a remarkable improvement by adding taurine to their daily regimine. You can find it at any vitamin store, GNC, etc. Buy a brand name that you trust. I'm not sure, but I think the lowest dose tablet is 500 mg., maybe there is a smaller size. Krishnan started Santosh on taurine, 500 mg. twice daily when he was 4 1/2, and this was the perfect dose for him and has resolved many of the malabsorption problems (orange oily, frequent stools) that he was previously having with Ultrase alone. Good luck, Katy. Kim -----Original Message-----Katy [mailto:baileyk80@s...] I am open for ANY AND ALL suggestions, tips, advice, etc on getting my daughters enzymes in her. She is 18 months, and her doc just recently changed her from Creon 10 (which we could just put through her button) to Ultrase MT-12 (which will not go through her button). When I mix them with ANYTHING, she pushes the beads out with her tongue. I am about ready to pull my hair out, HELP!!!!!!!!!! Katy Mom to Austin 4 no CF & Piper 18 months w/CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2005 Report Share Posted August 1, 2005 Hey guys... I am five weeks post surgery, and I am also 18 yrs. old. To answer your question Holly, after two weeks it is still hard to get around. When i was 2 weeks post-op, i was not driving, but i was i able to walk around (sometimes becoming out of breath). You could theoretically go to work or school after 2 weeks, but be aware that at that point, your body will still be tired, and a bit weak. By the 3rd week, you should notice a turnaround, and you'll be able to get back to a more normal lifestyle. For me, it was tough, because I lost a lot of weight, and am now gaining the weight back. I haven't been able to exercise at all, which I did a lot of too in high school. Anyway, I'm starting college in 3 weeks, and each day I'm working my way up to full strength. You should be fine in doing the surgery, it is totally worth it. I had upper and lower, and I see a big difference in appearance and feeling. You should be fine. Good luck. > > > I'm only 17 years old, will be heading off to college in August, > and I > > > have had braces for almost a year. My orthodontist told me that > I am > > > ready for the orthognathic surgery. My family picked out a > surgeon and > > > have already had one appointment with him for x-rays etc. It > was there > > > I found out of the numbness risk. The way he talked seemed like > it was > > > not uncommon to lost feeling and the idea of not having feeling > in my > > > lower lip and chin does not appeal to me. If anyone who has had > the > > > surgery could please leave a message and their own experiences > it would > > > greatly alleviate my stress.......or else worsen it Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2005 Report Share Posted August 1, 2005 Hey there, I'm also 18, starting college in a couple of weeks. I'm 10 days post op and I can get around fairly well. My main concern is I have to make sure I've taken in enough calories or I will start getting light headed, however I did drive 8 days post op to an exit about 5 miles away to meet my bf who was coming up to spend the weekend and then drove him back to that exit yesterday. I think it just depends on each individual and how comfortable you feel with getting around at a certain point post op. I'm not going to take off any time from school and my surgeon is working with me to see about taking my wires off at 3 weeks so that I can start school without them on. It'd be hard to start college and not be able to speak. This is a concern that you need to speak with your OS about and get his opinion on if you haven't already. I had both upper and lower moved and as of now the numbness is really almost gone. There is absolutley no numbness in my chin or lower lip and my upper lip is not numb however that place between my nose and upper lip and around the edges of my nose and parts of my nose itself are still numb, however i am getting feeling back there and movement back in my upper lip. Once again I think that is something that varies by individual depending on your surgeon and what operation you have done. -- > > > > I'm only 17 years old, will be heading off to college in > August, > > and I > > > > have had braces for almost a year. My orthodontist told me > that > > I am > > > > ready for the orthognathic surgery. My family picked out a > > surgeon and > > > > have already had one appointment with him for x-rays etc. It > > was there > > > > I found out of the numbness risk. The way he talked seemed > like > > it was > > > > not uncommon to lost feeling and the idea of not having > feeling > > in my > > > > lower lip and chin does not appeal to me. If anyone who has > had > > the > > > > surgery could please leave a message and their own experiences > > it would > > > > greatly alleviate my stress.......or else worsen it Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2007 Report Share Posted March 6, 2007 I have 2 girls, age 3 and 6 on the SCD diet, dairy free (casein allergies). They have been on the diet since last June, 2006. It's been great - joint pains, headaches, back pain, eczema, diarhea, constipation, hyperactivity, panic attacks, so much has cleared up. My 6 year old has always had a few small pimples on her cheeks and ears. This has not gone away. It was worse for a couple of months after starting the diet, but is now back to about 5 per cheek, 3 per ear. Does anyone have any suggestions for this? She is very sensitive, chemically speaking - she wrapped up in a blanket washed in regular detergent last week and had hives and congestion for 3 days. I've asked doctors, but they seem opinionless about the matter. I'm not freaking out about it, but I would like to know what these are from - I can't seem to figure it out. Any other suggestions about ANYTHING would be welcome too - this is our first kindergarten year, and my daughter has had to deal with a lot this year. Thanks so much, Heidi Crohn's, arthritis SCD dairy free 1 year Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2007 Report Share Posted March 6, 2007 > > I have 2 girls, age 3 and 6 on the SCD diet, dairy free (casein > allergies). They have been on the diet since last June, 2006. It's > been great - joint pains, headaches, back pain, eczema, diarhea, > constipation, hyperactivity, panic attacks, so much has cleared up. > I use a phosphate and frangrance free detergent (Canadian Brand) with a cup of baking soda addedto each laundry loadb/c I have extreme chemical sensitivities.I think Tide makes a liquid laundry detergent. calledTide Free that is similar. Free No scent at all and without dyes and perfumes CarolF. SCD 7 years, celiac Quote Link to comment Share on other sites More sharing options...
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