Guest guest Posted February 28, 2007 Report Share Posted February 28, 2007 Hi Carol, Thank you for your wonderful note. I am saying my weight loss journey started two years ago when I weighed 226. Of course my banding occurred on 6-30 of that year and I weighed 217 at that time. But I am a believer in saying total weight loss is at or near 80 lbs. Yes, I am in the Kansas City area and our little town is almost a suburb now and growing fast. One item I forgot to review is that my journey certainly has had plateaus and like many here I feared it wasn't working even when I cut calories to 800 per day for a while. Against my better judgment, I listened to Sandy , nurse guru for the Kuri people and when I brought them back to 1200 plus, the weight loss resumed. Of course, being me, I didn't think it was fast enough but in retrospect I am convinced it was just right because right now I don't have the hanging skin issues and am looking pretty good for a gal who will be 70 almost two months from now. I suspect my history has gone pretty ideally but of course, I can and do want more and faster just like everyone else. I can see I haven't done nearly as well as you from your banding in August of last year. Heartiest congratulations! Marilyn M Dempsay, age 69, 5'2 " KC area Kuri 6/30/05 226.146.135? high. now. goal You are rich in proportion to what you can do without. (And boy is there a lot more around here that I could be happier without - Marilyn) Re: Let me introduce myself > Hi Marilyn,, > love the hat and even more love your story. May I ask how long it took to > lose your weight? > I am in Australia so forgive this show of lack of knowledge..does KC mean > Kansas City?My husband is an American and is still in Mo, about 100 miles > from KC actually . Hopefully his illnesses will be under control and he > can move here to Australia soon. > I was a 20 pounds heavier than u when I was banded in Aug 06 and have > currently lost 61 and 1/2 pounds.I have about 30 pounds to go ,, well > thats what I think anyway,, Dr says 20 more lol. > I am a mature lady also and it's great to see that we can do it too. Take > care and enjoy the NEW MARILYN....power to us all on this sometimes rocky > road to health,, > Carol in Australia > > marilyn dempsay <mdempsay@...> wrote: > My story starts with my adventure in Mexico with the fabulous Dr. > Kuri. The trip down was pretty uneventful and the drama didn't start until > the next day of surgery. > > There were three > surgeons plus two doctors (one was the anesthesiologist) in attendance. > Then when I developed abnormal swelling, they kept me for 10 days instead > of > just overnight at no additional cost to me. All three of the surgeons > visited me twice each day except for the time Dr Kuri was in Mexico City. > They also redid surgery two more times to snip stitching to try to bring > the > swelling down. I lived on IVs throughout and since I had the run of the > hospital, I weighed myself regularly and lost maybe 5 - 10 lbs even though > I > understand that the IVs have a sugar base. Dr. Kuri also took me for a > fluoroscope one day to verify I was too tight. I was well acquainted with > hospital staff and the day I was released, the guard walked me and carried > my suitcase to the hotel. When I wanted to go shopping that evening one of > the bellboys accompanied me on the streets. When I still couldn't swallow > the broth, I called the doctors as instructed and Dr. Espinosa came to my > hotel room to make sure I wasn't in trouble (I wasn't). > > The upshot was that for all my extra troubles up front, I am one of the > few > that doesn't need fills. I am fully convinced that the doctors there will > do everything in their power to assure that things go right and I can't > imagine anything in the states that meets their standards. Oh, did I > mention that the hospital was spotless, immaculate. They even washed down > the doors on a daily basis. Nothing bad is going to happen to you down > there if they have anything to say about it. > > I have posted a picture summary of my weight loss history. I am also > adding a picture of me and my boa at Dr. Kuri's bash last year as this is > pretty descriptive of my present endeavors to get my head on straight and > learn the process of loving myself. As you can see humor plays a big role > and the truth is I am having a ball wearing a boa on my hat and strutting > my stuff. You need to try it. I did get my cousin convinced on our trip to > New York last year when we both put boas on our hats and everyone on the > streets greeted us with " love your hat " . That even happened when we were > near or on Broadway so I am thinking I was a hit on Broadway. The > appreciation came from men and women alike and I have been loving every > minute of it. > > Marilyn M Dempsay, > age 69, 5'2 " KC area > Kuri 6/30/05 > 226.146.135? > high. now. goal > > You are rich in proportion to > what you can do without. > > (And boy is there a lot more around > here that I could be happier without - > Marilyn) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2007 Report Share Posted February 28, 2007 Dear Marilyn, your story is facinating. it could be a banding mini-series..LOL the only comment i want to make about your missive is in regard to " loving your self " believe me, its not necessary. your value as a human being is based upon the contribution you make to humanity. and you do a wonderful job in this area right here on this site. i'm the same is true in every area of your life. so your value is already high. you don't need to even think about loving yourself. leave that for the rest of us. i'm sure that most of us do. keep trucking girl. i'm with you in the 60 plus group too. george Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2007 Report Share Posted September 29, 2007 I would love to talk to you, I also live in Bremerton, I was banded in March in Mexico could you email me at mseed@... Marcy -------Original Message snipped by moderator--- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2007 Report Share Posted September 29, 2007 Hi , I am new to this group but very interested to find out more about Dr. Neal. I had my surgery on June 2nd in Mexico and was seeing a doctor in Tacoma for my fills and follow up care. He is in the process of moving his office to Auburn and I am beginning to wonder if they will ever really relocate. I have been trying to find another doctor but haven't had much luck. Do you see Dr. Neal in Olympia for your fills? Congratulations on your great progress! Thanks, > > My name is and I am in > Bremerton WA. I was banded 6/12/07 by Dr Neal. HIs office is in > Olympia. I had been researching the LapBand for a couple years, but > when I found out that Dr Neal performs the surgery in Bremerton also, > I figured it > was " my " time to do this. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2007 Report Share Posted September 30, 2007 Welcome Dr. Neal impressed me with his compassion and caring for his patients when I saw him at Seattle Splash last year. He not only escorted his own patients during the style show but reached out and walked with one gal whose doctor couldn't be there. I thought that very gallant of him. Congrats on how well you are doing. Kathy R in Walla Walla NWWLS Everett Dr. Montgomery 10/13/2005 --- <kitsap_kookie@...> wrote: > My name is and I am in > Bremerton WA. I was banded 6/12/07 by Dr Neal. HIs > office is in > Olympia. I had been researching the LapBand for a > couple years, but > when I found out that Dr Neal performs the surgery > in Bremerton also, > I figured it > was " my " time to do this. > As of today, I have lost 68# and dropped 4 jean > sizes! I am still > " learning " how to eat responsibly. > One of the things I really wanted to say is that > everyone that works > at Dr Neals office is OUTSTANDING. Everyone has > always been so > nice..and so supportive. I have had 3 fills and each > time it was a > very pleasant experience. > I have not been to any support meetings as of yet. I > work overnights, > and its been very hard for me to get to one. When I > can work it out, I > will attend them. > Anyways, I just wanted to introduce myself. > Thank you > > pre-op / 308 > current/ 240 > goal / 170 (mini goal/200 by christmas!) > > > ________________________________________________________________________________\ ____ Check out the hottest 2008 models today at Autos. http://autos./new_cars.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2007 Report Share Posted September 30, 2007 Do you see Dr. Neal in Olympia for your fills? Hi , yes i go to olympia for my fills. i have had 3 fills so far. the drive is well worth it to me. (its about an hour from my house). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2007 Report Share Posted October 1, 2007 That one gal was ME! I was SHAKING scared and there's no way I could have gotten on that stage, had he not escorted me. He and his office have adopted me and I LOVE them. -I'm so glad you had some kind words to say and I hope you are part of Dr. Neal's forum as well. Your weight loss is outstanding! Olympia, WA _____ From: [mailto: ] On Behalf Of Kathy Rohde Sent: Sunday, September 30, 2007 7:20 AM Subject: Re: Let me introduce myself Welcome Dr. Neal impressed me with his compassion and caring for his patients when I saw him at Seattle Splash last >> He not only escorted his own patients during the >>style show but reached out and walked with one gal >>whose doctor couldn't be there. >>Kathy R in Walla Walla .. <http://geo./serv?s=97359714/grpId=4354660/grpspId=1705061104/msgId =11774/stime=1191161972/nc1=4718984/nc2=3848640/nc3=4840957> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Grisel, welcome to the group. My name is . I am a married sahm to 2 kids that are 25 and 8. I have 120 pounds to lose and have a number of health problems. You have certainly came to the right groupo for support and encouragement. Post often. EMilyseraphins2 <grislle27@...> wrote: My name is Grisel and I am new to this group. I'm 46, married and have two wonderful teenage kids. I have about 100 pounds that I need to desperately loose and hope with the support of my new friends in this group I can finally start on my path to loosing this weight. I don't want to diet but instead try to change my eating patterns and start eating in a more healthy way; I suffer from IBS so there are a lot of foods that I can't eat such as dairy, raw vegetables, greasy foods and wheat products. I am tired of the constant aches and pains that I have daily and honestly feel like double my age. Today I am going to try to embark on this path of doing something about it and will try to start off by walking at least for fifteen minutes a day. Any tips or suggestions from those in the group will be much appreciated.God Bless,Grisel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Welcome Grisel, I'm new to the group too. I sure know about IBS, sometimes its so bad I can't leave the house for days. It doesn't matter what I eat,or when, its a constant with me. I am going to the Dr in April to see if something else could be causing my symptoms along with the IBS. I have been taking Caltrate 600+D for about a week now and it has slowed down everything to a manageable state, if you know what I mean. Fiber Choice chewables has been a great help also. -- Let me introduce myself My name is Grisel and I am new to this group. I'm 46, married and have two wonderful teenage kids. I have about 100 pounds that I need to desperately loose and hope with the support of my new friends in this group I can finally start on my path to loosing this weight. I don't want to diet but instead try to change my eating patterns and start eating in a more healthy way; I suffer from IBS so there are a lot of foods that I can't eat such as dairy, raw vegetables, greasy foods and wheat products. I am tired of the constant aches and pains that I have daily and honestly feel like double my age. Today I am going to try to embark on this path of doing something about it and will try to start off by walking at least for fifteen minutes a day. Any tips or suggestions from those in the group will be much appreciated. God Bless, Grisel ------------------------------------ 100-Plus Files page 100-plus/files 100-Plus Links page 100-plus/links Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 In a message dated 3/27/2008 6:44:33 A.M. Pacific Daylight Time, grislle27@... writes: Today I am going to try to embark on this path of doing something about it and will try to start off by walking at least for fifteen minutes a day. Hi Grisel - how did your day go? Starting small with 15 min a day and building up should work great!! Let us know how it goes. in WACreate a Home Theater Like the Pros. Watch the video on AOL Home. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2009 Report Share Posted May 26, 2009 Welcome Jody and Family, I have a Sam, too! As far as therapy goes - he will do what he will do in his time, We tried to push Sam and he rejected AFOs, walkers orthotic, etc. We are revisiting the orthotics now after Sam has been walking for a few months. We hope to correct a wide stance and pronation. Again, welcome. Barb - mom to , 12 9 and Sam 4 (ds) On May 26, 2009, at 8:03 PM, jodyrae76 wrote: > > > I have been reading posts for a few weeks now and finally would like > to introduce myself. My name is Jody and I have a 17 month old son > (Sammy) with DS. He was born at 29 weeks gestation and has had 3 > surgeries to date. We had a good idea that he had DS prior to his > birth as they found a heart defect during an echo at 20 weeks. This > has made it easier on us as far as the diagnosis of DS. He has been > involved with Early Intervention since we brought him home at 2 > months of age. We started official PT, OT and Speech approx. one > month ago. My current questions relate to therapy and the use of hip > helpers and foot orthotics. Has anyone had experiences with these > and if so were they helpful or not?? It seems that many things are > controversial and that makes it more difficult to choose what is > best for my son. I am very proud of the things that Sammy has > accomplished so far and he amazes me every day! I just wish I got > the same feelings from the therapists... I feel like they are all > pushing us and I am just trying to relax and let Sammy do things in > his time. I do work with him at home everyday as I am a stay at home > mom. I am a nurse and my husband his a physician so we are educated > in the medical area, but sometimes I feel like it doesn't help that > much. I also have a 2 1/2 year old daughter. Please feel free to ask > any questions or offer any advice. I would really enjoy your > responses. Thank you! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Hi , and congratulations on the birth of your son, and for joining this group! You will be so glad you did. There is so much experience and wisdom here. My daughter was born at 34 weeks, she had 3 major surgeries (had duodenal atresia and a vsd) and she is now almost 8, and almost out of kindergarten, has two missing front teeth the tooth fairy paid her for, and is an awesome reader! Really - reads 1st - 2nd grade books on her own :-) We used Hip Helpers - I don't really know if they helperd, but Olivia wore them ok. That is a shame about the therapists, I think if you are doing all you can, with me it was really hard to work with her daily, and they knew it, they never pushed me. I think your child will progress at her own pace anyway. You have the right attitude. Your older daughter will provide Sammy with LOTS of extra PT and OT and Speech as well, just like my older two did with Olivia, so he has a head start right there! One thing I do remember - I always worried about why it took so long for Olivia to sit up independently. She was really old, like 16 months when she finally did. Then, a friend pointed out to me, she had 3 surgeries - 2 for the duodenal atressia, one for the heart surgery, so she has an upside-down capital " T " on her abdomen, so no wonder she couldn't, if all these muscles were healing. Just something for you to keep in mind. Welcome, and looking forward to hearing more about Sammy! Patty in Ohio From: jodyrae76 <jodyrae76@...> Subject: Let me introduce myself Date: Tuesday, May 26, 2009, 11:03 PM I have been reading posts for a few weeks now and finally would like to introduce myself. My name is Jody and I have a 17 month old son (Sammy) with DS. He was born at 29 weeks gestation and has had 3 surgeries to date. We had a good idea that he had DS prior to his birth as they found a heart defect during an echo at 20 weeks. This has made it easier on us as far as the diagnosis of DS. He has been involved with Early Intervention since we brought him home at 2 months of age. We started official PT, OT and Speech approx. one month ago. My current questions relate to therapy and the use of hip helpers and foot orthotics. Has anyone had experiences with these and if so were they helpful or not?? It seems that many things are controversial and that makes it more difficult to choose what is best for my son. I am very proud of the things that Sammy has accomplished so far and he amazes me every day! I just wish I got the same feelings from the therapists.. . I feel like they are all pushing us and I am just trying to relax and let Sammy do things in his time. I do work with him at home everyday as I am a stay at home mom. I am a nurse and my husband his a physician so we are educated in the medical area, but sometimes I feel like it doesn't help that much. I also have a 2 1/2 year old daughter. Please feel free to ask any questions or offer any advice. I would really enjoy your responses. Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Welcome, Jody! And congratulations on being blessed with a son who has Down's. Prepare yourself for a lot of joy. I am Granny, mother of four, grandmother to seven and great-grandmother to one. My youngest daughter is . She is 35 years old, reads, writes, does her own banking and pays her own bills, and is a big help to me. She works at a sheltered workshop every day. Trust your instincts! I, too, would not allow to be pushed by the therapists. I also thought she should develop in her own time and at her own pace, which I feel is more civilized that the " norm. " I think she has turned out very well. My eldest daughter was in orthopedic shoes and they did correct her foot problem, but you do what you think is best for your little one. Again, welcome! granny On Tue, May 26, 2009 at 10:03 PM, jodyrae76 <jodyrae76@...> wrote: > > > I have been reading posts for a few weeks now and finally would like to > introduce myself. My name is Jody and I have a 17 month old son (Sammy) with > DS. He was born at 29 weeks gestation and has had 3 surgeries to date. We > had a good idea that he had DS prior to his birth as they found a heart > defect during an echo at 20 weeks. This has made it easier on us as far as > the diagnosis of DS. He has been involved with Early Intervention since we > brought him home at 2 months of age. We started official PT, OT and Speech > approx. one month ago. My current questions relate to therapy and the use of > hip helpers and foot orthotics. Has anyone had experiences with these and if > so were they helpful or not?? It seems that many things are controversial > and that makes it more difficult to choose what is best for my son. I am > very proud of the things that Sammy has accomplished so far and he amazes me > every day! I just wish I got the same feelings from the therapists... I feel > like they are all pushing us and I am just trying to relax and let Sammy do > things in his time. I do work with him at home everyday as I am a stay at > home mom. I am a nurse and my husband his a physician so we are educated in > the medical area, but sometimes I feel like it doesn't help that much. I > also have a 2 1/2 year old daughter. Please feel free to ask any questions > or offer any advice. I would really enjoy your responses. Thank you! > > > -- Not for ourselves but for the whole world we were born Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Well is going to be 10 in June and our behavior specialist just recommended orthotics for his feet, he haw really flat feet, just like his mother (I was a ballerina for 13 years and my feet turned flat from all of that year round dancing). Good Luck!! Its a good thing that you have all the resources that you have - all of your book smarts and your husbands wealth of knowledge - but when it comes to your own child the medical information that you know goes right out your head. I always have to bring my sister with me (she just graduated from Nursing school) to ask all the proper questions because my head goes blank (I used to work in a Pediatrics office, and currently taking my generals for the Nursing program). Let me introduce myself I have been reading posts for a few weeks now and finally would like to introduce myself. My name is Jody and I have a 17 month old son (Sammy) with DS. He was born at 29 weeks gestation and has had 3 surgeries to date. We had a good idea that he had DS prior to his birth as they found a heart defect during an echo at 20 weeks. This has made it easier on us as far as the diagnosis of DS. He has been involved with Early Intervention since we brought him home at 2 months of age. We started official PT, OT and Speech approx. one month ago. My current questions relate to therapy and the use of hip helpers and foot orthotics. Has anyone had experiences with these and if so were they helpful or not?? It seems that many things are controversial and that makes it more difficult to choose what is best for my son. I am very proud of the things that Sammy has accomplished so far and he amazes me every day! I just wish I got the same feelings from the therapists... I feel like they are all pushing us and I am just trying to relax and let Sammy do things in his time. I do work with him at home everyday as I am a stay at home mom. I am a nurse and my husband his a physician so we are educated in the medical area, but sometimes I feel like it doesn't help that much. I also have a 2 1/2 year old daughter. Please feel free to ask any questions or offer any advice. I would really enjoy your responses. Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2009 Report Share Posted May 28, 2009 Hi! I'm a single mom, new to the group. I have three kids--a daughter, with ADHD; a 7 yr old with Asperger's, ADHD, and Bipolar; and a 6 yr old with PDD & /or OCD. My 7 yr old has been being evaluated for four years, and everyone is finally agreeing he has Asperger's. I have a degree in psychology, but honestly didn't pay much attention to this chapter! Lots of times I'm overwhelmed and feel alone, although we recieve some services, and my parents are pretty supportive. My other two kids do not always understand their brother--my daughter gets frustrated with him, and his little brother gets really nervous when behaviors start rearing their heads. I need some advice and support. I think my kids are the best and I'm so thankful for them. Just wish I wasn't doing this " alone " . ginger Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2011 Report Share Posted April 25, 2011 Welcome to CAST, & Kyra! It sounds like you have been on quite the journey, so far….Please read Moriah’s Story on the ISOP site under Congenital as she also had tetralogy of fallot & congenital scoli. I know Loma has a frame and the doc is keen on further developing the Early Treatment (ET) w/ EDF casting Program, but am unaware of his experience level at this point. It sounds like Kyra may be a bit complicated, so Id’e recommend seeking out an opinion from a doc very experienced w/ ET and EDF (elongation, derotation, flexion) casting. In the past, kiddos with congenital were not considered candidates for ET w/ EDF casting because a cast can never cure a bone abnormality…But, we are starting to see that the tide could be slowly turning for casting some congenital children, as well….We are seeing that a properly applied series of EDF/Mehta casts can be invaluable in buying precious growth time for our children with scoli, infantile & congenital. Naturally, this depends on what type of congenital, the child, the curve(s), the docs willingness, etc….But, its great news for some children w/ congenital. Ide check out the Shriners in SLC ~and~ the one in Portland. Also, please read Growth as a corrective force in the early treatment of progressive infantile scoliosis,” by Mehta which can be found in the Files section of CAST. Also, keep the questions coming. And, get hooked up with the congenital group too. Its run by a mum named Carmell and they will also have solid info for you to start delving into.Please keep us posted!HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of Sent: Monday, April 25, 2011 10:15 AMinfantile scoliosis treatment Subject: Let me introduce Myself Hello C.A.S.T Group,I can tell that this group is going to be of great resource and support for me and my Little Miss Magic. My name is and I have a 2.6 yrs old daughter, Kyra (Keer-ah). She was born in September 2008. To make a long story short at 2 weeks she was diagnosed with 22q11 deletion; AKA Digeorge syndrome. At 4 Months she started PT for torticollis, at 6 months she had open heart surgery to correct her tetralogy of fallot and repair a valve, at 18 Months she had tubes put in her ears and this past week she was diagnosed with Scoliosis. Her x-rays showed a 32 degree curve. When the doctor looked back at an x-ray taken a year ago, for her heart, he said the curve was minimal then. Due to her syndrome, she is developmentally delayed and thus walked at 21 months. Our next step is getting her MRI scheduled and the doctor talked about bracing her. She continues to receive PT, OT and Speech and attends an intervention preschool 2x a week for 3 hours. Like many of you, I hit the internet looking for information and what will be best for my daughter. We live in the San Diego, CA area and I have seen Loma University come up as possible Casting. Has anyone had any experience with LLU? Also. With the casting method, do the kids wear a brace afterwards and if so for how long? I am sure I will have more questions but I am just beginning to understand what is ahead and trying to stay focused. Many Thanks for your time! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2011 Report Share Posted April 26, 2011 , My daughter also had heart surgery at 4 months old for Tetralogy of Fallot. She was later diagnosed with 16q22 deletion syndrome. She is g-tube fed and developmentally delayed - 3 years old and still not crawling, walking, or talking. Doctors diagnosed her scoliosis just after her first birthday at 27 degrees, but the curve worsened to 41 degrees quickly and despite bracing got to 58 degrees before a doctor recommended casting. To my knowledge there is no one in California doing casting. We live in the L.A. area and travel to Salt Lake City Shriners Hospital. Just so you know the doctors have told us that they will not be able to correct my daughter's curve, but they have stopped it from getting worse and are " buying time " for her to grow before they have to do major surgery. Hope this helps! mom to Audrey, 5th cast, SLC(Salt Lake City) > > Hello C.A.S.T Group, > > I can tell that this group is going to be of great resource and support for me and my Little Miss Magic. My name is and I have a 2.6 yrs old daughter, Kyra (Keer-ah). She was born in September 2008. To make a long story short at 2 weeks she was diagnosed with 22q11 deletion; AKA Digeorge syndrome. At 4 Months she started PT for torticollis, at 6 months she had open heart surgery to correct her tetralogy of fallot and repair a valve, at 18 Months she had tubes put in her ears and this past week she was diagnosed with Scoliosis. Her x-rays showed a 32 degree curve. When the doctor looked back at an x-ray taken a year ago, for her heart, he said the curve was minimal then. Due to her syndrome, she is developmentally delayed and thus walked at 21 months. Our next step is getting her MRI scheduled and the doctor talked about bracing her. She continues to receive PT, OT and Speech and attends an intervention preschool 2x a week for 3 hours. Like many of you, I hit the internet looking for information and what will be best for my daughter. We live in the San Diego, CA area and I have seen Loma University come up as possible Casting. Has anyone had any experience with LLU? Also. With the casting method, do the kids wear a brace afterwards and if so for how long? I am sure I will have more questions but I am just beginning to understand what is ahead and trying to stay focused. > Many Thanks for your time! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2011 Report Share Posted April 26, 2011 , My daughter also had heart surgery at 4 months old for Tetralogy of Fallot. She was later diagnosed with 16q22 deletion syndrome. She is g-tube fed and developmentally delayed - 3 years old and still not crawling, walking, or talking. Doctors diagnosed her scoliosis just after her first birthday at 27 degrees, but the curve worsened to 41 degrees quickly and despite bracing got to 58 degrees before a doctor recommended casting. To my knowledge there is no one in California doing casting. We live in the L.A. area and travel to Salt Lake City Shriners Hospital. Just so you know the doctors have told us that they will not be able to correct my daughter's curve, but they have stopped it from getting worse and are " buying time " for her to grow before they have to do major surgery. Hope this helps! mom to Audrey, 5th cast, SLC(Salt Lake City) > > Hello C.A.S.T Group, > > I can tell that this group is going to be of great resource and support for me and my Little Miss Magic. My name is and I have a 2.6 yrs old daughter, Kyra (Keer-ah). She was born in September 2008. To make a long story short at 2 weeks she was diagnosed with 22q11 deletion; AKA Digeorge syndrome. At 4 Months she started PT for torticollis, at 6 months she had open heart surgery to correct her tetralogy of fallot and repair a valve, at 18 Months she had tubes put in her ears and this past week she was diagnosed with Scoliosis. Her x-rays showed a 32 degree curve. When the doctor looked back at an x-ray taken a year ago, for her heart, he said the curve was minimal then. Due to her syndrome, she is developmentally delayed and thus walked at 21 months. Our next step is getting her MRI scheduled and the doctor talked about bracing her. She continues to receive PT, OT and Speech and attends an intervention preschool 2x a week for 3 hours. Like many of you, I hit the internet looking for information and what will be best for my daughter. We live in the San Diego, CA area and I have seen Loma University come up as possible Casting. Has anyone had any experience with LLU? Also. With the casting method, do the kids wear a brace afterwards and if so for how long? I am sure I will have more questions but I am just beginning to understand what is ahead and trying to stay focused. > Many Thanks for your time! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2011 Report Share Posted April 27, 2011 Thank you for all the information. I hope to get the call today and set up her MRI. If I don't hear form them by the end of the day, I'll call them! @ , I have a feeling that Kyra's Condition is linked to her syndrome. Our Ortho Doctor told us that their maybe a link from open heart surgery and developing scoliosis. It puts a lot of pressure on the back. Thank you for the information as well! I made a neurology appointment, incase the MRI shows it is congenital. They said I can always cancel and the first available was in July. I will continue to lurk and post updates when I have new news. Thanks again! > > Hello C.A.S.T Group, > > I can tell that this group is going to be of great resource and support for me and my Little Miss Magic. My name is and I have a 2.6 yrs old daughter, Kyra (Keer-ah). She was born in September 2008. To make a long story short at 2 weeks she was diagnosed with 22q11 deletion; AKA Digeorge syndrome. At 4 Months she started PT for torticollis, at 6 months she had open heart surgery to correct her tetralogy of fallot and repair a valve, at 18 Months she had tubes put in her ears and this past week she was diagnosed with Scoliosis. Her x-rays showed a 32 degree curve. When the doctor looked back at an x-ray taken a year ago, for her heart, he said the curve was minimal then. Due to her syndrome, she is developmentally delayed and thus walked at 21 months. Our next step is getting her MRI scheduled and the doctor talked about bracing her. She continues to receive PT, OT and Speech and attends an intervention preschool 2x a week for 3 hours. Like many of you, I hit the internet looking for information and what will be best for my daughter. We live in the San Diego, CA area and I have seen Loma University come up as possible Casting. Has anyone had any experience with LLU? Also. With the casting method, do the kids wear a brace afterwards and if so for how long? I am sure I will have more questions but I am just beginning to understand what is ahead and trying to stay focused. > Many Thanks for your time! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2011 Report Share Posted April 27, 2011 Thank you for all the information. I hope to get the call today and set up her MRI. If I don't hear form them by the end of the day, I'll call them! @ , I have a feeling that Kyra's Condition is linked to her syndrome. Our Ortho Doctor told us that their maybe a link from open heart surgery and developing scoliosis. It puts a lot of pressure on the back. Thank you for the information as well! I made a neurology appointment, incase the MRI shows it is congenital. They said I can always cancel and the first available was in July. I will continue to lurk and post updates when I have new news. Thanks again! > > Hello C.A.S.T Group, > > I can tell that this group is going to be of great resource and support for me and my Little Miss Magic. My name is and I have a 2.6 yrs old daughter, Kyra (Keer-ah). She was born in September 2008. To make a long story short at 2 weeks she was diagnosed with 22q11 deletion; AKA Digeorge syndrome. At 4 Months she started PT for torticollis, at 6 months she had open heart surgery to correct her tetralogy of fallot and repair a valve, at 18 Months she had tubes put in her ears and this past week she was diagnosed with Scoliosis. Her x-rays showed a 32 degree curve. When the doctor looked back at an x-ray taken a year ago, for her heart, he said the curve was minimal then. Due to her syndrome, she is developmentally delayed and thus walked at 21 months. Our next step is getting her MRI scheduled and the doctor talked about bracing her. She continues to receive PT, OT and Speech and attends an intervention preschool 2x a week for 3 hours. Like many of you, I hit the internet looking for information and what will be best for my daughter. We live in the San Diego, CA area and I have seen Loma University come up as possible Casting. Has anyone had any experience with LLU? Also. With the casting method, do the kids wear a brace afterwards and if so for how long? I am sure I will have more questions but I am just beginning to understand what is ahead and trying to stay focused. > Many Thanks for your time! > > Quote Link to comment Share on other sites More sharing options...
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