Guest guest Report post Posted January 16, 2004 Hello Tammy, welcome to the list. Our kid with cf is Pattimae, she's three and was diagnosed at 2 months old. You'll love the list. They have been a wonderful help to me since her diagnosis. Dawn mom of 4, 7 and under, the youngest wcf Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 16, 2004 Welcome Tammy, I'm from Orange Co CA and I have 2 kids, my son is 21 no cf (Nick) and My daughter is almost 20 w/cf. She was diagnosed at 8 months. We have been through a lot, but she is very healthy. This is a really great support group, I hope to get to know you and athon better! love, M Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 24, 2004 In a message dated 1/24/2004 4:42:56 PM Central Standard Time, imfeld95@... writes: Gretchen HI I have three daughters and two of them have CF my oldest is 11 w/CF, my middle child is 9 wo/CF and my youngest is 6 w/CF. My oldest is the worst worry wart there is!! And she also has anxiety attacks too. As a kid I know I had these too but of coarse my folks didn't have a clue what it was so the only way I could deal with is was to try to ignore it and think nothing is going to happen to me to day so why worry about it. So that is what I tell her and it seems to calm her down. I know this disease is horrible and they have to deal with so much. Hang in there you are a good mom and this is a great group to come to when you need some moral support or just a shoulder to lean on. We are all here for you. Deb A Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 25, 2004 hi Gretchen, Sorry I have no answers for you, my daughter is not much of a worrier. I just wanted to say welcome to the group! mom of 5 with CF and one on the way visit our site at http://groups.msn.com/TeamJane Hello I just found this group today and wanted to introduce myself. I am a mother of two cf children. Meghan is 7 and Faith is 4. I homeschool both and obviously stay home with them. My husband works for the state dept. of corrections and we live in Denver metro area. I was just wondering if any of you have children that are having post traumatic stress from hospital stays, or if any of your children are worry warts. I think Meghan is starting to understand cf more and her mortality. She has stopped going to sleep well at night and has had anxiety to the point of dry heaving. She is seeing a thrapist now but I just wondered if anyone else is having these issues? Thanks. Oh, my name is Gretchen my husbands name is Gregg. ------------------------------------------- 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 Share this post Link to post Share on other sites
Guest guest Report post Posted January 25, 2004 Welcome aboard, Gregg--dive right on in; here the water is always fine: excellent moderator, positive members, life-jackets all round! n Rojas, wcf, BPAD Hello I just found this group today and wanted to introduce myself. I am a mother of two cf children. Meghan is 7 and Faith is 4. I homeschool both and obviously stay home with them. My husband works for the state dept. of corrections and we live in Denver metro area. I was just wondering if any of you have children that are having post traumatic stress from hospital stays, or if any of your children are worry warts. I think Meghan is starting to understand cf more and her mortality. She has stopped going to sleep well at night and has had anxiety to the point of dry heaving. She is seeing a thrapist now but I just wondered if anyone else is having these issues? Thanks. Oh, my name is Gretchen my husbands name is Gregg. ------------------------------------------- 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 Share this post Link to post Share on other sites
Guest guest Report post Posted January 25, 2004 Welcome; all that I posted in my post applies to you and more so! n Rojas, wcf, and BPAD also. I am also the mother of three contentious adults, the youngest of whom has cf--so far--we are all kicking! I am a retired neuropsychologist, so you can probably guess my sugges tion--nothing like a therapist who is really good with kids! Love, all of you, n Rojas Hello I just found this group today and wanted to introduce myself. I am a mother of two cf children. Meghan is 7 and Faith is 4. I homeschool both and obviously stay home with them. My husband works for the state dept. of corrections and we live in Denver metro area. I was just wondering if any of you have children that are having post traumatic stress from hospital stays, or if any of your children are worry warts. I think Meghan is starting to understand cf more and her mortality. She has stopped going to sleep well at night and has had anxiety to the point of dry heaving. She is seeing a thrapist now but I just wondered if anyone else is having these issues? Thanks. Oh, my name is Gretchen my husbands name is Gregg. ------------------------------------------- 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 Share this post Link to post Share on other sites
Guest guest Report post Posted January 25, 2004 This list is the best place you could have found: great moderators, terrific members, anecdotes about brave kids, new ideas, information and great support--the safest cf space in cyberspace--just dive right in--no life-savers needed here! Love, n,wcf, mom of 3 wild adults, the youngest of whom has cf also--all still kicking! Hello I just found this group today and wanted to introduce myself. I am a mother of two cf children. Meghan is 7 and Faith is 4. I homeschool both and obviously stay home with them. My husband works for the state dept. of corrections and we live in Denver metro area. I was just wondering if any of you have children that are having post traumatic stress from hospital stays, or if any of your children are worry warts. I think Meghan is starting to understand cf more and her mortality. She has stopped going to sleep well at night and has had anxiety to the point of dry heaving. She is seeing a thrapist now but I just wondered if anyone else is having these issues? Thanks. Oh, my name is Gretchen my husbands name is Gregg. ------------------------------------------- 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 Share this post Link to post Share on other sites
Guest guest Report post Posted January 25, 2004 Welcome Gretchen and Gregg! Patty, mom to Tyler, 8wcfand adhd, and 2wocf but most certainly waiting to test for adhd > I just found this group today and wanted to introduce myself. I am a > mother of two cf children. Meghan is 7 and Faith is 4. I homeschool > both and obviously stay home with them. My husband works for the > state dept. of corrections and we live in Denver metro area. I was > just wondering if any of you have children that are having post > traumatic stress from hospital stays, or if any of your children are > worry warts. I think Meghan is starting to understand cf more and > her mortality. She has stopped going to sleep well at night and has > had anxiety to the point of dry heaving. She is seeing a thrapist > now but I just wondered if anyone else is having these issues? > Thanks. Oh, my name is Gretchen my husbands name is Gregg. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 25, 2004 Hi Gretchen, Welcome to our group. My twins are only 4 so their not yet aware of their condition. But, I'm sure anxiety and fear is something that occurs to most people with chronic, life-shortening illnesses. It's good that she's seeing a therapist. Also, trying to focus on her accomplishments and getting her involved in sports could help a great deal in givng her a sense of control and a strong sense of self-esteem. Good luck, C Mommy to Mick and Alli, 4 yo twins wcf --- imfeld95 wrote: > I just found this group today and wanted to > introduce myself. I am a > mother of two cf children. Meghan is 7 and Faith is > 4. I homeschool > both and obviously stay home with them. My husband > works for the > state dept. of corrections and we live in Denver > metro area. I was > just wondering if any of you have children that are > having post > traumatic stress from hospital stays, or if any of > your children are > worry warts. I think Meghan is starting to > understand cf more and > her mortality. She has stopped going to sleep well > at night and has > had anxiety to the point of dry heaving. She is > seeing a thrapist > now but I just wondered if anyone else is having > these issues? > Thanks. Oh, my name is Gretchen my husbands name is > Gregg. > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 26, 2004 Welcome Georgi. Congratulations on the weight loss. Lori Owen - Denton, Texas SRVG 7/16/01 Dr. Ritter/Dr. Bryce 479/356/hoping for close to 200 On Mon, 26 Jan 2004 12:51:59 -0000 " gvanvelzor " writes: > Ive been hiding in lurkdoom for a while. My surgery was 8-9-02 at > OSU hospital in Columbus Ohio.I weighed 410 and today I weigh 196.I > > am thankful for everyday that I have weighing less and being able > to breath better.I need to stay involved in grads group for the > support and encouragement that is here in this group for each > other. > georgi > > > > Homepage: http://groups.yahoo.com/group/Graduate-OSSG > > Unsubscribe: mailto:Graduate-OSSG-unsubscribe > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 26, 2004 WELCOME .You will really enjoy the lists . Take care LOVE & HUGS, GrandmomBEV Hello I just found this group today and wanted to introduce myself. I am a mother of two cf children. Meghan is 7 and Faith is 4. I homeschool both and obviously stay home with them. My husband works for the state dept. of corrections and we live in Denver metro area. I was just wondering if any of you have children that are having post traumatic stress from hospital stays, or if any of your children are worry warts. I think Meghan is starting to understand cf more and her mortality. She has stopped going to sleep well at night and has had anxiety to the point of dry heaving. She is seeing a thrapist now but I just wondered if anyone else is having these issues? Thanks. Oh, my name is Gretchen my husbands name is Gregg. ------------------------------------------- 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 Share this post Link to post Share on other sites
Guest guest Report post Posted February 2, 2005 Liana, Hi! I am new here but I am just wowed with the wealth of information! I hope you feel better soon! Angie in SC " The happiest of people don't necessarily have the best of everything; they just make the best of everything that comes along their way. " Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 2, 2005 >Hi my name is Liana and I live in Tampa, FL. I joined the group about 2 months ago but I haven't posted much. I'm still experiencing flare ups and it's so frustrating. At least today I have an appointment with a new Gastroenterologist.< Liana, It's great that you've been able to learn something by your association in the group. That's what we're here for! It's also nice of you to come out of hiding and let us know a little about you. Finding a good gastroenterologist who knows something about pancreatitis can really be a challenge. So many people like you have had to search hard to find the right physician, so I hope that the new one you see today is the right one for you, and that he's knowledgable enough to handle your treatment. Please let us know how your appointment went, and some more about how things are going for you. With love, hope and prayers, Heidi Heidi H. Griffeth Bluffton, SC South Carolina State Rep. South Eastern Regional Rep., PAI http://www.pancassociation.org/anthology#Heidi.html Note: All comments or advice are from personal experiences or opinion only, and should not be a substitute for consultation with your medical professional. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 29, 2005 Hi , Jump right in if you have any questions. We are a fun group here. If you look at the posts for the past couple of weeks, you can actually get answers to many questions. I will be having my surgery in less than 2 weeks, but there are many people who have just had theirs...I know that 1 person had theirs on 7/22 also. You will find a lot of helpful information here. Austria --- wrote: > Hello everybody...never realized there was a group > on yahoo for > something like this...anyway my name is and > I'm from East > Tennessee...I had my upper jaw brought forward some > and my lower jaw > set back on July 22nd...anyway...haven't really > looked through the > group much yet...just thought i'd say hey. --ashley > > > > ____________________________________________________ Start your day with Yahoo! - make it your home page http://www.yahoo.com/r/hs Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 22, 2005 Hello, I don't think that there is only ONE best Hospital in the World for Orthognathic Surgery; I think that there are alot of great hospitals that do great Orthognathic Surgeries. Actually, the most important thing is to find a really GREAT Surgeon to perform the Orthognathic Surgery. And, I'VE already found MY Great Surgeon! The hospital doesn't make the surgery go well, it's the SURGEON!! ~~ Diane > Hello, > What is the best Hospital in the World for Orthognatic Surgeries? > Do you know their website? > > Thanks Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 23, 2005 what I mean is one hospital having good Orthognathic Surgeons, Craniofacial surgeons, Plastic Surgeons & Maxillofacial sugeons because still I don't know how many type of surgeons I require for my case! In my country nobody can help me! Surgeons here just want to make business! > >Reply-To: orthognathicsurgerysupport >To: orthognathicsurgerysupport >Subject: [Orthognathic Surgery Support ] Re: Hello >Date: Tue, 23 Aug 2005 02:52:58 -0000 > >Hello, I don't think that there is only ONE best Hospital in the World >for Orthognathic Surgery; I think that there are alot of great >hospitals that do great Orthognathic Surgeries. Actually, the most >important thing is to find a really GREAT Surgeon to perform the >Orthognathic Surgery. And, I'VE already found MY Great Surgeon! The >hospital doesn't make the surgery go well, it's the SURGEON!! ~~ >Diane > > Hello, > > What is the best Hospital in the World for Orthognatic >Surgeries? > > Do you know their website? > > > > Thanks > > _________________________________________________________________ FREE pop-up blocking with the new MSN Toolbar - get it now! http://toolbar.msn.click-url.com/go/onm00200415ave/direct/01/ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 23, 2005 Once again, it's the surgeon you should be seeking, not the hospital. There are surgeons who work together in surgery (one as the main surgeon, other as backup or even trainee), but normally it's just one surgeon you see for your condition. But please, give us more information about you. What is so specific about your case that you think you require more than one surgeon? Where do you live? > > > Hello, > > > What is the best Hospital in the World for Orthognatic > >Surgeries? > > > Do you know their website? > > > > > > Thanks > > > > > > _________________________________________________________________ > FREE pop-up blocking with the new MSN Toolbar - get it now! > http://toolbar.msn.click-url.com/go/onm00200415ave/direct/01/ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 23, 2005 Thank you for your reply. I live in Kuwait. I've attached some photos of my case. I need to know where can I do the Operation or with which Sergeon. >From: fiddlesticks220002 <no_reply > >Reply-To: orthognathicsurgerysupport >To: orthognathicsurgerysupport >Subject: [Orthognathic Surgery Support ] Re: Hello >Date: Tue, 23 Aug 2005 13:34:47 -0000 > >Once again, it's the surgeon you should be seeking, not the >hospital. There are surgeons who work together in surgery (one as >the main surgeon, other as backup or even trainee), but normally >it's just one surgeon you see for your condition. > >But please, give us more information about you. What is so specific >about your case that you think you require more than one surgeon? >Where do you live? > > > > > > > > Hello, > > > > What is the best Hospital in the World for Orthognatic > > >Surgeries? > > > > Do you know their website? > > > > > > > > Thanks > > > > > > > > > > _________________________________________________________________ > > FREE pop-up blocking with the new MSN Toolbar - get it now! > > http://toolbar.msn.click-url.com/go/onm00200415ave/direct/01/ > > _________________________________________________________________ Don't just search. Find. Check out the new MSN Search! http://search.msn.com/ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 23, 2005 Hi again, Yahoo won't let you send attachments over e-mail. If you want to post photos, you have to do them on the website, in the photos section, just create a folder, then upload your photos into that photo (jpg format). So we're not any clearer on the particulars of your case, but you say you're from Kuwait, so yes, you probably have to travel for this surgery. Many people have their surgeries done at teaching hospitals (that might help with your costs, since I assume this is going to be a more expensive route for you, having to leave the country). For example, there's a place called Baylor in Texas where quite a few members have had their surgery. And one member here actually travelled to India for her surgery! University of North Carolina has an orthognathic department, I believe, and you could do an internet search to find that and others, if you are still bent on finding a hospital that specializes in this. Most major cities have a number of surgeons capable of doing this type of surgery. You need to find an orthodontist that will work closely with your surgeon, though, so keep that in mind too. My own surgeon is the best I know of, Dr. Tocchio, in Toronto. He used to work out of three different hospitals, depending on where he could get operating room time. Maybe others would like to say who their surgeon is/was. I would still start with the surgeon. Make sure he/she has and continues to do MANY of these surgeries a year. Ask to talk to some of his/her patients, both good and not-so-good outcomes. Hope that helps, > > > > > Hello, > > > > > What is the best Hospital in the World for Orthognatic > > > >Surgeries? > > > > > Do you know their website? > > > > > > > > > > Thanks Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 24, 2005 Thank you very much for replying & helping. I've attached some photos in Group's Website under the name of Q8aviation. I've send same photos to Crainofacial Sergeon.He said that I do not have any Craniofacial syndrome! If somebody can provide me Good Orthognathic Sergeon website or contact. Thanks Yours Fawaz >From: fiddlesticks220002 <no_reply > >Reply-To: orthognathicsurgerysupport >To: orthognathicsurgerysupport >Subject: [Orthognathic Surgery Support ] >Re: Hello >Date: Tue, 23 Aug 2005 18:58:02 -0000 > >Hi again, > >Yahoo won't let you send attachments over e-mail. If you want to >post photos, you have to do them on the website, in the photos >section, just create a folder, then upload your photos into that >photo (jpg format). > >So we're not any clearer on the particulars of your case, but you >say you're from Kuwait, so yes, you probably have to travel for this >surgery. > >Many people have their surgeries done at teaching hospitals (that >might help with your costs, since I assume this is going to be a >more expensive route for you, having to leave the country). For >example, there's a place called Baylor in Texas where quite a few >members have had their surgery. And one member here actually >travelled to India for her surgery! University of North Carolina has >an orthognathic department, I believe, and you could do an internet >search to find that and others, if you are still bent on finding a >hospital that specializes in this. Most major cities have a number >of surgeons capable of doing this type of surgery. You need to find >an orthodontist that will work closely with your surgeon, though, so >keep that in mind too. > >My own surgeon is the best I know of, Dr. Tocchio, in Toronto. He >used to work out of three different hospitals, depending on where he >could get operating room time. > >Maybe others would like to say who their surgeon is/was. > >I would still start with the surgeon. Make sure he/she has and >continues to do MANY of these surgeries a year. Ask to talk to some >of his/her patients, both good and not-so-good outcomes. > >Hope that helps, > > > > > > > > > Hello, > > > > > > What is the best Hospital in the World for Orthognatic > > > > >Surgeries? > > > > > > Do you know their website? > > > > > > > > > > > > Thanks > > > _________________________________________________________________ Don't just search. Find. Check out the new MSN Search! http://search.msn.com/ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 24, 2005 You are correct , UNC does have a dental school specializing in this stuff. I have had that Dr. Turvey (not sure if the name is correct) is very good, and I know someone who went to him. The # there is and Sherri is the receptionist. I thought of going here myself, but they don't take my insurance and I already have a great surgeon. Just wondering if you are in Kuwait with the military. I just know there is a lot of them there. If so, you may want to talk with your doctor. There is some rule that if you are somewhere that the care you need is not available, they will help you get to a bigger facility. Not sure of all the rules, but worth checking into. Rene` > > > > > > Hello, > > > > > > What is the best Hospital in the World for Orthognatic > > > > >Surgeries? > > > > > > Do you know their website? > > > > > > > > > > > > Thanks Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 25, 2005 Glad things are better for you today, and I hope you get a good report from your surgeon. You will probably find at some point that you can wean yourself off the pain meds (maybe take them going to bed, but sleep through the night without getting up every 3 or 4 hrs to take them, for example, and then later skip the nighttime meds), but don't try to be a soldier and go without if you really need it. It is hard to catch up on pain once it takes hold. > > I got some my pain medicine refilled, I will not let it run out again! > I feel pretty good today, I got some ear drops for earache pain and > they seem to help out with the pain by my ear area. > > I go back to my surgeon tomorrow to see how my bite is coming along, > he is goin to take everything off and take a look at things. I hope > things are good but if they are not I will do what it takes. It will > feel nice to get these bands off even if its only for a few minutes. > the last time I went the doctor didnt say much and said things didnt > look quite right..but he said it may just be swelling. > > I will find out more tomorrow, thanks for everyone replying to me, Im > single and this kinda sucks being alone and going through this > especially when u feel awful at 3am and cant sleep, this site is very > comforting. > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 25, 2005 Hi nky_guy77, I am really glad you got those refilled. Will watch for your post on your surgeon visit tomorrow. Good luck! Hugs, Fran > > I got some my pain medicine refilled, I will not let it run out again! > I feel pretty good today, I got some ear drops for earache pain and > they seem to help out with the pain by my ear area. > > I go back to my surgeon tomorrow to see how my bite is coming along, > he is goin to take everything off and take a look at things. I hope > things are good but if they are not I will do what it takes. It will > feel nice to get these bands off even if its only for a few minutes. > the last time I went the doctor didnt say much and said things didnt > look quite right..but he said it may just be swelling. > > I will find out more tomorrow, thanks for everyone replying to me, Im > single and this kinda sucks being alone and going through this > especially when u feel awful at 3am and cant sleep, this site is very > comforting. > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 21, 2011 Hi Friends, I know it has been a long time since I posted but I was on today and wanted to say Hi from Virginia! I hope everyone is doing as well as can be expected; spring is here and I don't know about anyone else, but I am really glad to have some warmer temps and some sunshine. I am still undiagnosed (10 yrs) but I plugging right along. I just wanted to encourage everyone to do the same. I look forward to spending some time here with my old and new friends and wish you all a great day! Terri G. Quote Share this post Link to post Share on other sites
