Guest guest Posted November 6, 2003 Report Share Posted November 6, 2003 > I look forward to meeting and learning from you folks. > > Sincerely, > , welcome to our group. You can see we are being silly today. Elle and I started this group last year so we could have a nice, friendly environment. What we have in common is Dr.K, but everyone has had their surgery with him. Some have had to go elsewhere for their DS due to insurance reasons. Some do not have a DS yet. Some, like me, have had the DS and had the Tummy Tuck, too, with either Dr.K, like me, or with another surgeon. We have a photo album with reconstuctive surgery photos, too. You can check us out in the albums. Some of us were " virgins " and some of us had previous WLS. I, like you, did not know about the DS and was researching WLS for a friend/patient when I heard about it. I was thrilled because I thought, hey, God invented this just for me! LOL! Again, welcome. Marta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2003 Report Share Posted November 6, 2003 Welcome to the group ! I'm Melisa, wife to and mom to Brittany age 14, Kymberly almost 13 and Krystina almost 12. I am a post op patient having lost 150 pounds! Currently I am awaiting my plastic surgery to remove my hanging belly skin! I love life again!!!! WOO HOO!!! Welcome to the list... Melisa Rechenmacher Independent Pampered Chef Kitchen Consultant For more information, e-mail me at KitchenStore2urDoor@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2003 Report Share Posted November 6, 2003 Welcome to the group. I really enjoyed reading your intro letter. lee felt lonely there in Texas being a DSer so she is working in increasing the numbers one at a time (laughing). Isn't she just stunning! Soooo when is your consultation appointment? Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2003 Report Share Posted November 6, 2003 > Hi, my name is and I live in Fort Worth, Texas. I'll be 37 in > December and have been married for almost 13 years. We have a 20 month old > daughter. > > I've always had a weight problem. Opti-fast (and any other fad diet) in high > school. Weight Watchers in college and after college. Nutrisytem. > Craig (I bought a lifetime membership). Fen/Phen. Lean Bodies. Adkins. I was > diagnosed with minor sleep apnea. Solution from the EN & T doctor: lose > weight. > > I'm sure you all have been on this same roller coaster. I'm now at my > largest weight I've ever been and have come to a decision - WLS. > > I started the process to get a Lap-Band here locally in Texas. The surgeon I > picked is in a University setting and things have gone very slowly - which > actually worked to my advantage. I subscribed to a local group of > folks who have been banded. I began to see some real problems that I did not > think would help me out in the long term. There were reports of ports > slipping and leaking. I met a couple of folks who had started to eat around > the band. Not to knock these wonderful motivated ladies, but I saw these > folks get really motivated with eating right and exercising. Well, guess > what. I do that every time I start a diet. When I'm in a structured > environment, I do very well. It's the long term that concerns me. I started > to have doubts that the lap band would be a good long term solution for me. > > The other option was RNY. I considered the surgery to be very extensive and > did not want the complications described with the dumping. Furthermore, I > was also not really looking forward to having to chew, chew, chew (another > problem with Lap-Band). > > A funny thing happened one day when my husband & I were sitting at the local > Mcs. I had a woman tell me that she was once as large as I was. I did > not take offense at this comment - I wondered how I could ask her what she > did to get so skinny. Well, Lee (who's on this list) broke the ice and > said that she wanted to tell us what she did and that she hoped that I did > not take offense. I had no idea that DS was an option and upon researching > this procedure, have determined that this is the right WLS for me and my > husband. > > My lifestyle is somewhat sedentary. I work out of my home at a desk. > Consequently, we end up going out to eat quite often because it's a quick > way to get out of the house. > > My husband will also be pursuing the DS procedure. > > I look forward to meeting and learning from you folks. > > Sincerely, > ~~~~~~~~~~~~` Welcome to our group and to your husband also.This is a fun group of people and any questions you might have they can answer.Have a great time and ask away on ANYTHING you want to ask God's blessings to you and your family Pat in Taft,Ca revision 1-02 334lbs now 185 I LOVE THIS SURGERY!!!!! Can you tell??? LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2003 Report Share Posted November 6, 2003 Hi , and welcome to our world -- both you and your hubby! I am one year out (tomorrow) have lost 111 pounds (and stalled). I am going to be 50 in December and the GR-DS is the best gift I have ever received. Just yesterday, I bought my first *regular* sized jacket -- a misses large! Color me happy! Ask all the questions you can think of, we are a friendly group (sometimes full of teases and friendly ribbing, always willing to give support). I wish you all the best! Hugs and blessings, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2003 Report Share Posted November 7, 2003 Hi SHelly, Welcome! Post away! Ask questions! Get others' perspectives! DId I mention we have a support group meeting every month in Farmers Branch? It is tommorrow. I won't be going tommorrow as I am going to a scrapbooking get together in OKC, but I am generally a regular there and we have a good time. So excited for you and !! hugs, cindy lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2003 Report Share Posted November 7, 2003 Hi SHelly, Welcome! Post away! Ask questions! Get others' perspectives! DId I mention we have a support group meeting every month in Farmers Branch? It is tommorrow. I won't be going tommorrow as I am going to a scrapbooking get together in OKC, but I am generally a regular there and we have a good time. So excited for you and !! hugs, cindy lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2003 Report Share Posted November 9, 2003 Welcome ! And God bless Lee for being so courageous in speaking to you! I know I couldn't have done that myself. Please feel free to ask us any questions you might have. I had my surgery in November of 2001. I've lost 131 pounds so far. I'm hoping to lose another 15 or so. I also had a hernia repair and tummy tuck. I went from a size 28/30 to size 14. The difference in size is great but the improvement in my health is the biggest difference! I'm so happy with my results! Best of everything to you in your journey! Tracey > Hi, my name is and I live in Fort Worth, Texas.> > Sincerely, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2003 Report Share Posted November 9, 2003 Welcome ! And God bless Lee for being so courageous in speaking to you! I know I couldn't have done that myself. Please feel free to ask us any questions you might have. I had my surgery in November of 2001. I've lost 131 pounds so far. I'm hoping to lose another 15 or so. I also had a hernia repair and tummy tuck. I went from a size 28/30 to size 14. The difference in size is great but the improvement in my health is the biggest difference! I'm so happy with my results! Best of everything to you in your journey! Tracey > Hi, my name is and I live in Fort Worth, Texas.> > Sincerely, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2003 Report Share Posted November 9, 2003 Ann, that is so cool! I'm so happy for you! What a dream come true that must be. Yeehaaa! Hugs! Tracey Just yesterday, > I bought my first *regular* sized jacket -- a misses large! Color me happy! Hugs and blessings, Ann > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2003 Report Share Posted November 9, 2003 Ann, that is so cool! I'm so happy for you! What a dream come true that must be. Yeehaaa! Hugs! Tracey Just yesterday, > I bought my first *regular* sized jacket -- a misses large! Color me happy! Hugs and blessings, Ann > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 Welcome, Lorna. I look forward to hearing more from you on the list. introduction Hi Im lorna Wynn and I have Aspergers and I was dx inthe summer of 99. I t was a relief to get the name of why I was different from alot of get in school as a kid. I had some ritualls and socaill issues. I didnt show an interest in playing with kids until 9 years old and I would play with them on my own terms. i WAS WANTING TO BUT THEY WOULNT PLAY WITH ME. i HAD REPEPTITIVE BREATHING AND A SCRATCHING HABIT OR STIMMS IF YOU WANT TO CALL IT THAT. SCUSe the capitals it was a accident, but any way I would like to get to know all of you and give you support as well. I also live in the midwest in Kansas. Lorna Wynn Unlocking Autism www.UnlockingAutism.org Autism-Awareness-Action Worldwide internet group for parents who have a child with AUTISM. SeekingJoyinDisability - Prayer support for those touched by Disability: SeekingJoyinDisability/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 Welcome, Lorna. We're glad you're here. introduction > Hi Im lorna Wynn and I have Aspergers and I was dx inthe summer of > 99. I t was a relief to get the name of why I was different from > alot of get in school as a kid. I had some ritualls and socaill > issues. I didnt show an interest in playing with kids until 9 years > old and I would play with them on my own terms. i WAS WANTING TO BUT > THEY WOULNT PLAY WITH ME. i HAD REPEPTITIVE BREATHING AND A > SCRATCHING HABIT OR STIMMS IF YOU WANT TO CALL IT THAT. SCUSe the > capitals it was a accident, but any way I would like to get to know > all of you and give you support as well. I also live in the midwest > in Kansas. Lorna Wynn > > > > > Unlocking Autism > www.UnlockingAutism.org > > Autism-Awareness-Action > Worldwide internet group for parents who have a > child with AUTISM. > > SeekingJoyinDisability - Prayer support for those touched by Disability: > SeekingJoyinDisability/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2004 Report Share Posted February 21, 2004 Hello and thanks for joining! Your opinions and ideas will be a big help to all of us! Tonya Hettler Cell 806-544-0347 TX Federation of Families, training specialist http://www.txffcmh.org Unlocking Autism, TX Rep http://www.unlockingautism.org West Texas Information Network, Owner w-i-n introduction Hi Im lorna Wynn and I have Aspergers and I was dx inthe summer of 99. I t was a relief to get the name of why I was different from alot of get in school as a kid. I had some ritualls and socaill issues. I didnt show an interest in playing with kids until 9 years old and I would play with them on my own terms. i WAS WANTING TO BUT THEY WOULNT PLAY WITH ME. i HAD REPEPTITIVE BREATHING AND A SCRATCHING HABIT OR STIMMS IF YOU WANT TO CALL IT THAT. SCUSe the capitals it was a accident, but any way I would like to get to know all of you and give you support as well. I also live in the midwest in Kansas. Lorna Wynn Unlocking Autism www.UnlockingAutism.org Autism-Awareness-Action Worldwide internet group for parents who have a child with AUTISM. SeekingJoyinDisability - Prayer support for those touched by Disability: SeekingJoyinDisability/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 Welcome. We have a daughter and husband with immune deficiency. I would also second getting levels checked to see if she has any antibodies to her vaccinations. This would help to determine if she has any immune function. Some people produce low levels and some people produce but shoot blanks (no function to their levels). Some do both. The entire immune system workup must be done before the immune globulin is started because this will give her passive antibodies and all testing will just show what she has received from the IV doses and not what she is able to produce herself. Sinus behavior is real difficult amongst these kids. Mostly I think because the headaches (or sometimes migraines) that are involved with these infections can be so hard. PID patients get infected into the most deep of sinuses and have a harder time clearing the infection. Has your daughter seen a clinical immunologist? Who will order and infuse the immune globulin? The Immune Deficiency Foundation has a wealth of information. www.primaryimmune.org Daily antibiotic treatment is a standard thing for many of the PID's. Has he named a specific one that he thinks she may have? Isolation from school, church and other group activities is sometimes recommended during periods of difficult illness. Some newly diagnosed patients are already living in a type of self-imposed limited lifestyle but doctors are careful to restrict activity because of quality of life. Our daughter spent the better part of the first 3 years of her life in isolation. By year 2 she was starting immune globulin and by year 5 she was out of the house and starting a reduced school week for pre-K. My husband was sick as a child and teenager but wasn't diagnosed till his 30's. Obviously isolation wasn't in the cards for him but his lungs are shot and his outlook isn't as rosey. So hopefully we've saved her that. Isolating her at this age is a coin toss between real benefit and quality of life. Regarding the yeast. Since antibiotics are going to be a pretty often thing I would suggest trying acidophilus tablets, yogurt or other culturelles to help replenish the good flora. This might help. Has her T-cell function been tested? CD4 and CD8 counts? antibody level to tetanus vaccination? mitogen and antigen function tests? If low then this would help explain the heightened problems with yeast and would also lead to a diagnosis of a more involved PID. Just some thoughts Ursula Holleman mom to (11 yrs old) and Macey (9 yr. old with CVID, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org IDF Patient/Family Handbook http://www.primaryimmune.org/pubs/book_pats/book_pats.htm / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 Hi, Jeane, You've come to the right place! Many of us have children who get IVIG routinely. What immune functions have been checked? Did you doctor do subclasses and titers for vaccines. If you have not already done so, you should contact the IDF and get their material to help explain all of this. I'm sorry that this diagnosis is yet another " hit " to your mom's heart, but it probably will explain why your dd has so many infections. Pam wife to (17 years) mother to , 10, Hannah, 8, Rebekah, 5, and Leah, 3 Rebekah has CVID and ?? Introduction Hi, My name is Jeane and andra, our eight year old daughter was just diagnosed with PID. also has FG syndrome (deaf, GERD, breathing Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 In a message dated 10/5/2004 8:00:39 PM Eastern Daylight Time, maryjeanedavis@... writes: The constant use of anti-biotics also produces unending yeast infections that are becoming more and more difficult to clear. The last two times we had to use Diflucan and the pediatrician was very alarmed by this because she is afraid that eventually she will become immune to that. I would love to know how you all cope with this My daughter has chronic yeast infections. She has to be on Diflucan everyday! She has been on it for months now. The immune doctor has her on it. She had toenail fungus that was resistant to the regular meds for it. The Diflucan is clearing it up now. I couldn't believe the immune doctor when he said it would probably clear it. He is right. Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 In a message dated 10/5/2004 10:45:16 PM Eastern Daylight Time, uahollem1@... writes: If low then this would help explain the heightened problems with yeast and would also lead to a diagnosis of a more involved PID. Ursula, What do you mean by more involved PID? Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2004 Report Share Posted October 11, 2004 from Dale, MOm to Katy, CVID, age 20 Sara, I would certainly look into home health care. That's what a lot of patients on this list use. There are some really good companies out there. I would do all the leg work -- making sure that my insurance covers it -- then inform the doctor of your decision. Most of the nurses that do infusion therapy know how to get veins -- occasionally you get one that just can't get it -- but that is rare and they usually have a back up that they can call. Once you've chosen a home health care company, then let them call the doctor and ask for the prescription or you can inform the doctor and ask him to fax the prescription to them. Unfortunately, a lot of small doctor's offices are making money off the administration of the IV. And, there's no reason for you and your daughter to be so terribly inconvenienced. This IV stuff is hassle enough without making it such a nightmare. You could be in the comfort of your own home -- letting the nurse come to you! If he refuses to give you the prescription -- I think I would contact the state medical board and lodge a complaint against the doctor. As Noelle's legal guardian, you are entitled to make the decisions that are in her best interest. This arrangement doesn't sound right and I think you are ready to make some waves. But, just for your information, most home health companies won't take you on as a patient until you've successfully completed 3 infusions at a hospital or medical facility -- so you are exactly on time in seeking a better arrangement! Best wishes for finding a better arrangement! In His service, Dale Sara Drews wrote: >hospital. He wants us to try his staff once more for the IV start. The first time was an unsuccessful nightmare. I agreed but am having second thoughts. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2004 Report Share Posted October 11, 2004 Sara, I wanted to support what Dale said! Our move to home health care was the best thing we ever did for Rebekah. We get the same nurse each time, aren't exposed to all of the germs of the hospital, she gets to rest in her own bed, I don't have to scramble for childcare, etc!!! We were terrified of moving to home health care, but it has gone very well after a couple of tough pokes at the beginning. Pam wife to (17 years) mother to , 10, Hannah, 8, Rebekah, 5, and Leah, 3 Re: Introduction from Dale, MOm to Katy, CVID, age 20 Sara, I would certainly look into home health care. That's what a lot of patients on this list use. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2004 Report Share Posted October 11, 2004 We also changed to home health care after driving 1 1/2 hours to philadelphia for an infusion that took ALL DAY! September 11th 2001 I happened to be pulling into childrens hospital oblivious to what what going on around me. Needless to say, I was traumatized by the whole thing, trying to frantically get home to my other kids. I got so scared, I told them they had to come to me. It was the best thing I ever did. Prior to that, I was terrified of home care (what if something went wrong....) My Dr. told me I was taking more of a risk trying to drive from Jersey to Philly than it was to get his infusion at home! Anyway, the other plus was it only took about 3 1/2 hours vs. 6 or more! Now, that time depends on the amount and the speed of your infusion, but for us, it was a big difference in time, not battling the hospital bureaucracy. We love our nurse...she has been the same one for three years. She is an infusion nurse, so this is all she does...IVIG, Chemo, IV Antibiotics, etc... We had a couple of occasions where we had trouble getting a vein...but we got through it. I also found it is so much more comfortable for my son. Just walking into the hospital made him tense. I would never go back to the hospital setting if I could help it. Good luck! Kim, Mom to - 8 (CVID) From: Pam Mork <pmork@...> Date: Monday, October 11, 2004 8:19 am Subject: RE: Introduction > > Sara, > > I wanted to support what Dale said! Our move to home health care > was the > best thing we ever did for Rebekah. We get the same nurse each > time, aren't > exposed to all of the germs of the hospital, she gets to rest in > her own > bed, I don't have to scramble for childcare, etc!!! We were > terrified of > moving to home health care, but it has gone very well after a > couple of > tough pokes at the beginning. > > Pam > wife to (17 years) > mother to , 10, Hannah, 8, Rebekah, 5, and Leah, 3 > > > > Re: Introduction > > > > from Dale, MOm to Katy, CVID, age 20 > > Sara, I would certainly look into home health care. That's what > a lot > of patients on this list use. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2005 Report Share Posted June 23, 2005 Hi Alan ( with 1 L ), Happy you're here. This is a great group of people. Susie ( with a S ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2005 Report Share Posted June 23, 2005 Hi Alan ( with 1 L ), Happy you're here. This is a great group of people. Susie ( with a S ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2005 Report Share Posted August 25, 2005 - welcome to the group. I have a 10 yr old daughter with CVID and my husband is diagnosed with it. Our daughter takes IgG replacement but my husband does not. When my daughter was not receiving IgG her levels dropped in the 200's. They restarted it because they were afraid she would catch something that she couldn't recover from. She had problems with fatigue but no real deep infections. Is your immunologist a pediatric one? I would think that at a certain level he would need coverage just to keep from getting infected, not just to overcome an infection. Have they done a DNA test for x-linked agammaglobulinemia (aka Bruton's)? His levels are very low. His function sounds non-existant. THI (transient) happens with toddlers but usually their levels are borderline or somewhat low. His are lower than I've heard of with most THI cases. But if he is clinically stable and has had little infection then there is hope. Did you nurse him? If so are you still? Macey's not had problems with rejecting vaccinations but then they've pretty much not taken in the first place and once she started IgG replacement then they weren't needed anymore. If he's not showing any quantity (the 110 level) or any quality (the non-existant titers) then I would think at some point they would have to decide to give them to him somehow. That would be the IVIG (infusions). He's got to have them to fight infections. Is he in daycare? any daily public environments? Does he go to nursery at church? Ursula Holleman mom to (12 yrs old) and Macey (10 yr. old with CVID, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org IDF Patient/Family Handbook http://www.primaryimmune.org/pubs/book_pats/book_pats.htm / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 Introduction Hi and Good Morning…My name is (31) and married to Mike. We have two sons and live in Cheyenne Wyoming. Our sons are (9) and (8). After 3 years our son was finally diagnosed with Aspie. He had been diagnosed ADHD – 9 Aspie 8 – ADHD **********Welcome to the group . There are lots of folks, with lots of knowledge, so feel free to ask any questions. If you don’t get an answer the first time, do ask again. I have 13 year old son diagnosed with Asperger’s at almost 10. He also has OCD (Obsessive Compulsive) and Tourettes. We all went through a lot when he was 9 trying to figure out what was going on, as he was so sad. I am happy to report he is doing quite well overall at this time. He is a very bright kid always teaching me something new! His main interests right now are Star Wars, History. and being involved with a role playing group. Again welcome, Gail Quote Link to comment Share on other sites More sharing options...
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