Guest guest Posted November 18, 2001 Report Share Posted November 18, 2001 Hi ette, What province are you in, I'm in Orangeville, Ontario. , mom of 3 1/2 Autism Spectrum Disorder > I'm new to the group. We suspect that our three year old son is > somewhere on the autism spectrum but we are still awaiting a diagnosis. > We live in Canada and there is a huge wait in the health care system. I > just found out that our health plan will pay for most of a private > diagnosis so we are going that route. In the meantime, I am in the > process of putting on a GFCF diet. He has been on the diet for > about 2 weeks but we have had some slip ups as a result of this all > being so new. Interestingly enough I am recognizing some of the > regressions I have been reading about on this message board - chewing > his sleeves, night waking, an unbelievable tantrum at the doctor's > office today. I would be interested in hearing from other people in > Canada about Canadian GFCF products, other alternative therapies I'm > hearing about hear, and if it is possible to find a doctor that will > support me. I told my GP about the diet today and gave me a look that > told me she thought it was pitiful that I was resorting to " alternative > therapies " that would not work. This site has been a wealth of info. > Thanks to everyone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2001 Report Share Posted November 19, 2001 looking for a list of DAN doctors.by the way, what does DAN stand for. we are new to all of this. also, which doctors accept private insurance? we have cigna ppo. thanks! brandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2003 Report Share Posted August 17, 2003 In a message dated 8/17/2003 11:07:35 AM Eastern Standard Time, edeldoug@... writes: > I'm not going to bore you with a long history of the last 2 years but > to get acquainted here's a brief synopsis: > > Trust me Doug, it takes a lot to bore us. There are many here who share your problem. Hopefully not everyone is out fishing. Carol A wrote a good post about stretched stomas. You may be able to find it in the archives. I also posted it near the bottom of my profile. It is well written. Fay Bayuk **300/166 10/23/01 Dr. Open RNY 150 cm Click for My Profile <A HREF= " http://obesityhelp.com/morbidobesity/profile.phtml?N=Bayuk951061008 " >http:\ //obesityhelp.com/morbidobesity/profile.phtml?N=Bayuk951061008</A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2003 Report Share Posted August 17, 2003 Hi Doug and welcome to the group! Wow, you've been through a lot. Good for you that you've maintained such a positive attitude. > In the 2nd year I'm suspecting my stoma's stretched (probably my > fault for returning to a bad Mountain Dew habit when I started a new > job last October. Well first off, let me relieve you of some of that guilt. It IS possible that your stoma is stretched, but unless the doctor removed your ability to burp, the Mt. Dew didn't do it. I'm hoping we're talking DIET Mt. Dew here, because of course the empty calories of the full-sugar version would account for those 20 pounds pretty easily, with or without an intact stoma. So a few questions -- do you drink with meals or have any snacks while you're drinking your Dew? What could be happening is that you can eat too much because you wash the food right through the pouch by drinking with meals. Depending on how your particular surgery is constructed, you may still have the stretchy part of the stomach, which will let you accommodate more food than you should be able to eat with a normal pouch. (I have this problem, can eat considerably more than many other folks I know before my stomach feels full.) And then there is the question of what you are eating when you eat -- are you getting in protein shakes? The protein goes a tremendous way to help crub the cravings for other foods. Are you eating too many carbs? I can't explain why (well I can, but not in a short email), but protein fills us and keeps us satisfied, while carbs just stick to us in extra pounds, and then beg for more carbs to keep the insulin levels even. Carbs come and find me and jump right on and stick. What does a typical day's food look like? The exercise is a good idea. Keep moving, burn calories, pretty simple math. But if the Mt. Dew is diet, you can have one. The jury is still out on caffeine, so you might want to limit the intake for that reason, and if you're washing the food out of the pouch with the Dew you need to change that, but you don't have to give it up entirely unless it triggers you to crave other foods that are less than desirable to have around. Hope that helps some. And again, welcome! ~~ Lyn G Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2003 Report Share Posted November 9, 2003 My understanding is that our body thinks we are starving and tries to compensate by " improving " the absorption of our digestive system. I have heard of people whose surgeions, in the course of a revision have discovered that the walls of the common channell have thickened and sometimes the common channel has even increased significantly in length. A theory I have heard from Michele Curran, VitaLady, is that if we keep our bodies nourished as much as possible (eg. take our protein and vitamins religiously), then we can fool our bodies into thinking that nothing has changed, thus it will not try to adjust. Makes sense to me. Barbara Jean Re: new to group > Hi , > > I have always heard of 1.5 yr window of opportunity. I do not know the > mechanics behind that. Maybe someone on this list does know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2003 Report Share Posted November 9, 2003 Or at least at a much slower pace Thanks, Vitalady, Inc. T www.vitalady.com If you are interested in PayPal, please click here: https://www.paypal.com/affil/pal=orders%40vitalady.com Re: new to group > > > > Hi , > > > > I have always heard of 1.5 yr window of opportunity. I do not know the > > mechanics behind that. Maybe someone on this list does know. > > > Homepage: http://groups.yahoo.com/group/Graduate-OSSG > > Unsubscribe: mailto:Graduate-OSSG-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2003 Report Share Posted November 15, 2003 Welcome to the grad board, . I wish I could give you a magic answer, but the one tired one still applies. Get the carbs out of your life and start drinking your water again (bet ya stopped Small high protein meals with some protein shakes in between. You must start an exercise program even if it is a walking program. (My weight maintains so nicely and easily because of the weight lifting program I followed early on. My BMR is very high which means I burn more calories then the average bear even when sitting.) I still work out 3-4 times a week 2.5 years later. Learn the tricks of the trade! At this point I know what I can legally snack on, what the weapons of destruction are, how many meals and snacks I need, yadda yadda. You MUST develop a routine and a knowledge of what your body needs, wants and burns easily. One of the valuable lessons I learned is that it is OK to feel hunger without thinking " Henny penny the sky is falling " !!! Feel it for a few minutes, heck..embrace it (think thin!)...and get busy and I guarantee you if it is not real hunger it will 99% of the time go away in just seconds. For me most of the time it gets confused with thirst and if I chug a glass of water, bingo...its gone and I am FULL. You must work on your head and your habits in a major way. Your WLS still wants to work for you. It is your head that is the enemy. Get it in line and show it who the boss is God bless, Carol G. > Hello Everyone! > > I just joined and I'm almost 2 years post-op next month. I had Open > RNY in San , Texas. My start weight was 346 and I am now 225. > I recently lost 6 ounds. Don't know when or where but I haven't lost > in over a year and I want to get Back on Track again. > > Any good suggestions to make the wight loss start up again? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2003 Report Share Posted November 18, 2003 great advice for us all thanks janice Re: New to Group Welcome to the grad board, . I wish I could give you a magic answer, but the one tired one still applies. Get the carbs out of your life and start drinking your water again (bet ya stopped Small high protein meals with some protein shakes in between. You must start an exercise program even if it is a walking program. (My weight maintains so nicely and easily because of the weight lifting program I followed early on. My BMR is very high which means I burn more calories then the average bear even when sitting.) I still work out 3-4 times a week 2.5 years later. Learn the tricks of the trade! At this point I know what I can legally snack on, what the weapons of destruction are, how many meals and snacks I need, yadda yadda. You MUST develop a routine and a knowledge of what your body needs, wants and burns easily. One of the valuable lessons I learned is that it is OK to feel hunger without thinking " Henny penny the sky is falling " !!! Feel it for a few minutes, heck..embrace it (think thin!)...and get busy and I guarantee you if it is not real hunger it will 99% of the time go away in just seconds. For me most of the time it gets confused with thirst and if I chug a glass of water, bingo...its gone and I am FULL. You must work on your head and your habits in a major way. Your WLS still wants to work for you. It is your head that is the enemy. Get it in line and show it who the boss is God bless, Carol G. > Hello Everyone! > > I just joined and I'm almost 2 years post-op next month. I had Open > RNY in San , Texas. My start weight was 346 and I am now 225. > I recently lost 6 ounds. Don't know when or where but I haven't lost > in over a year and I want to get Back on Track again. > > Any good suggestions to make the wight loss start up again? > > > Homepage: http://groups.yahoo.com/group/Graduate-OSSG Unsubscribe: mailto:Graduate-OSSG-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Congrats on your weight loss! You are doing great! I would talk to your doctor about the sweating and definitely the headaches if it continues. in Delaware Lap RNY 3/10/04 261/169/120 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2004 Report Share Posted October 23, 2004 Hi Liana- Welcome to the group! Just sorry you have this problem...I think you will find a lot of support and information here. I have dx with chronic pancreatitis but I have acute attacks also, just hurt in between attacks most of the time now. My problem started almost 4.5 years ago when I had my gallbladder removed. At first it was an attack, I would get over it and be fine for 6 months, but in the last 18 months I went from an attack here and there and recovered completely to more frequent attacks and the pain is constant now. I am so sorry to hear about your little boy. I can't even imagine the pain of losing a child. You are so brave to share your story, and you are in my prayers. As for trying to have more children and worried about pancreatitis, this is the place to find some answers. I have two boys, and we wanted to have one more, but with all of my pain and problems, we decided not too. I know there are women on here who have had children with this disease. I pray you can find answers and that God will bless you with another angel very soon. Feel free to e-mail me. c.buggeln@.... Where are you from? Hugs, Suzi Colorado > > Hi my name is Liana and I have been suffering from Acute > Pancreatitis for the past 5 years. I'm currently 25 years old, > married to a wonderful husband (we'll be celebrating 5 years in > Dec.) and I have 2 sons, one is 2 years old my other son is > will be celebrating his 1st heavenly birthday in Dec (lived only 11 > hours due to a condition called Potter's Syndrome). > > These past 5 years have not been easy for me. I hate feeling sick > all the time! The doctor's can't explain to me why I'm having so > much pain....when I don't drink alcohol,nor smoke, etc. In the past > 5 years I've had 3 attacks. The most recent was this past Feb, I > was in the hospital for 2 weeks. Last week I got an MRCP done and > it came back normal. This coming up Monday I have to get an upper > GI done and a test called Gastric Emptying Study. We'll see what > that shows. I had my gallbladder removed 2 years ago and I thought > that was going to better my condition, but no. IT'S SO > FRUSTRATING! Some days I'm fine all day and some days I'm in so > much pain. > > Anyway, I look forward getting to know all your stories through this > group. Thanks again for listening. > > Sincerely, > Liana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 Liana, I just wanted to introduce myself to you. My name is and I have bee suffering from CP for almost 7 years now. I had my first attack when I was only 23. It is very hard to be a healthy young person and to get this disease especially when the doctors can't give you any clear cut answers to why you have it. I never was much of a drinker, maybe a glass of wine or a beer if we went out to dinner ocasionally. I know how hard it is to function with this when you have small children, I have 2 girls 6 & 4. If you ever want to talk just email me, we have a lot in common. I also had a little boy who passed away, he only lived for 12 hours because he had alobar holoprosencephaly. Take Care, Stout Mommy to Hannah and Hayle Angel boys Wayde and Bryce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 Hi , Wow we do have a lot in common. Sorry to hear about your little boy. It's something hard to go through! Also, sorry to hear that you too have this condition. I haven't been dianosed with Chronic Pancreatitis yet by my GI doctor but my primary feels that I do have CP because I'm always in pain. My pancreas is functioning though (producing the insulin...which is good). But I just hate being in pain. Tomorrow I go in to get an upper GI done and a Gastric Emptying Study. The next step will probably be another ERCP. My GI is holding off on it because he knows that could cause a pancreatitis attack. We'll see. I hate being sick and having my 2 year old tell me " mami has a boo-boo " . It breaks my heart. But at times just looking at him gives me the strength to go on. In the midst of all this my DH and I are trying to get pregnant again. I don't want this condition to get worse where I won't be able to have another baby. We'll see. During both my pregnancies I didn't have any problems with my pancreas....at least no big attacks. I would experience pain but nothing major. So, I pray the same for if I get pregnant again. This weekend hasn't been easy. Since Friday I've been feeling very nauseous and with pain. I managed to get up and go to church but we had to leave early because I wasn't feeling good. It's so hard to function when you're on Percocet and phenergan. - Thanks for sharing your story with me. I'm sorry that you have been going through this since you were 7! I just can't imagine! I really admire your strength! Hang in there! You will be in my prayers! Suzi-- I also want to thank you for sharing your story. It breaks my heart that so many people have to go through this. I look forward getting to know you and everyone else better! For once I feel like I'm not alone! I'm very excited I can get on here and vent to people that know what I'm going through. Thanks for your support! Before I end let me tell you a little bit more about myself. I'm was born in Puerto Rico but moved to FL in 1987 (when I was 8yrs old). I'm 25 years old and I live in Tampa Florida. My DH and I will be celebrating our 5th wedding anniversary on Dec. 18th (we are going to Las Vegas!! I can't wait!). My son is 2 1/2 years old. And my second born will be celebrating his 1st heavenly birthday on Dec. 8th. Well this is all for now. Thanks again for the warm welcome! I hope you all have a pain-free evening! God Bless! Liana Top Line Creations Put a little TLC into your scrapbook! Top Line Creations Liana Consultant #408323 Fam4@... www.topline-creations.com/LMARScrappin tel: IM: Yahoo: lmardiazfam4; MSN: AMLDIAZ2002 Add me to your address book... Want a signature like this? Re: New to group Liana, I just wanted to introduce myself to you. My name is and I have bee suffering from CP for almost 7 years now. I had my first attack when I was only 23. It is very hard to be a healthy young person and to get this disease especially when the doctors can't give you any clear cut answers to why you have it. I never was much of a drinker, maybe a glass of wine or a beer if we went out to dinner ocasionally. I know how hard it is to function with this when you have small children, I have 2 girls 6 & 4. If you ever want to talk just email me, we have a lot in common. I also had a little boy who passed away, he only lived for 12 hours because he had alobar holoprosencephaly. Take Care, Stout Mommy to Hannah and Hayle Angel boys Wayde and Bryce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 Leo - I also had pancreas divisum. I say " had " as i had the whipple surgery 11/24 and had it cut out along with 25% of my pancreas. I am doing well, and time will tell if I am cured, but what was causing my pancreatitis is GONE, so my surgeon feels very confident. I am writing my story of my surgery/recovery one chap at a time, as I am still weak (I also am anemic right now and am taking Procrit shots once a week) and not able to stay on line/sit up for very long. Welcome - this site is a wonderful resource and a great support. Cecilia Mesa, AZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 Hi Becca, Sorry about your situation with your husband. I wish there were easy answers to any of this, but there really isn't. But the one thing that I can offer you is relief over worrying about your husband's use of pain medications and the addiction concern. There is virtually no risk of becoming addicted to pain meds when they are being used to control pain. Addiction refers to the whole psychological behavior pattern that comes about after someone uses narcotics to get a mental " high " . Research has shown that this rarely happens when pain meds are used to treat pain - even in people that have had a prior history in substance abuse. So I wouldn't even let that make a home in your mind. In fact, there is much more risk of becoming chronically ill and experiencing an early death when pain is NOT treated appropriately. There is some published research that is indicating that a chronic pain syndrome, no matter its root cause, induces some very real physical changes in the person that affects overall health and life expectancy. So there is a good reason to treat pain aggressively (other than it being a humane thing to do). Addiction is not dependence and you must realize that to be dependent on pain meds in order to live is no different than having to take insulin if you are a diabetic or high blood pressure pills or anti-rejection meds, etc. And all of us who take pain meds in order to eat, work, sleep, etc are physically dependent on them but we are not in any way addicted. So, bottom line, be more worried about him not taking the pills than about him taking the meds. I hope that you get some answers soon on how he can better manage this illness. It is a very frustrating disease for everyone that experiences the whole syndrome. Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2005 Report Share Posted July 26, 2005 Welcome to the group! I am having my surgery August 11th and there are about 4 others having it between August 8th and 15th...you can join the group, and we can share our experiences!!! I am glad you were persistant and made sure that you got this taken care of...I hope it will help! Keep us updated! Austria --- " Judith D. " wrote: > Hello all! > > My name is Judy and I am in the Dallas, Texas area. > I have been in > braces for almost a year and scheduled for surgery > August 3rd. I am > having quite a bit done. I really appreciate the > albums you have > generously made available. I am 52 and I have been > uncomfortable > with my mouth since childhood. I have had tons of > dental work, > crowns, root canals etc. When I checked into getting > braces at about > 30, I was told that braces would not be of any > signifigant help to > me. I tried to accept that and be happy with the way > I looked. I did > not have much success. I think Carol Burnett was the > first famous > person I heard of having this type of surgery and I > started to hope > I would be able to do something. A few years ago I > went to a new > dentist, Dr Glenn, she suggested that I have some > partials made to > fill in the holes in my smile where teeth were > missing. ( As a > child, I had a cyst in my upper jaw and lost a > couple of teeth to > that, then I avoided the dentist, my brother had > told me they were > going to pull out all my teeth. Okay you get the > picture, Lots of > cavities!) Anyhow I told Dr Glenn that I was > unwilling to spend > anymore money on a smile I hated, unless it was to > do something > radical. Dr Glenn got in touch with an orthodonist > who had an > associate and good friend who happened to be an Oral > surgeon. Now it > is almost two years later and I am so excited! I > have no idea what > kind of real change there will be in my appearance > once everything > is said and done, and oh yes the swelling, numbness > and bruising > goes away. I hope that I will be able to breathe > easier, My lower > jaw is moving out, and my upper jaw moving up and > back 5mm. It would > be awesome to be able to shut my mouth without > effort and as a bonus > what if I can whistle! I will try to post some > pictures soon. > > Hope everyone has a great day! > > Judy in disguise with braces! > > > > ____________________________________________________ Start your day with Yahoo! - make it your home page http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2005 Report Share Posted July 26, 2005 Hi Judy, Welcome to the board! There is so much great information here that you will be busy the next few days just going over some old posts to see the general flow of preop concerns and preparations, op-days issues, and postop recovery concerns. It really does help just going through the posts of the last few weeks to see what others have gone through. There are a lot of subtleties that you will pick up just from reading those. Good luck with your upcoming surgery. I am wishing you an uneventful recovery and to have the fabulous results you never even dreamed were possible! Hugs, Fran > Hello all! > > My name is Judy and I am in the Dallas, Texas area. I have been in > braces for almost a year and scheduled for surgery August 3rd. I am > having quite a bit done. I really appreciate the albums you have > generously made available. I am 52 and I have been uncomfortable > with my mouth since childhood. I have had tons of dental work, > crowns, root canals etc. When I checked into getting braces at about > 30, I was told that braces would not be of any signifigant help to > me. I tried to accept that and be happy with the way I looked. I did > not have much success. I think Carol Burnett was the first famous > person I heard of having this type of surgery and I started to hope > I would be able to do something. A few years ago I went to a new > dentist, Dr Glenn, she suggested that I have some partials made to > fill in the holes in my smile where teeth were missing. ( As a > child, I had a cyst in my upper jaw and lost a couple of teeth to > that, then I avoided the dentist, my brother had told me they were > going to pull out all my teeth. Okay you get the picture, Lots of > cavities!) Anyhow I told Dr Glenn that I was unwilling to spend > anymore money on a smile I hated, unless it was to do something > radical. Dr Glenn got in touch with an orthodonist who had an > associate and good friend who happened to be an Oral surgeon. Now it > is almost two years later and I am so excited! I have no idea what > kind of real change there will be in my appearance once everything > is said and done, and oh yes the swelling, numbness and bruising > goes away. I hope that I will be able to breathe easier, My lower > jaw is moving out, and my upper jaw moving up and back 5mm. It would > be awesome to be able to shut my mouth without effort and as a bonus > what if I can whistle! I will try to post some pictures soon. > > Hope everyone has a great day! > > Judy in disguise with braces! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 Hello, , and welcome to this group! I have an underbite, am 47, and have been in braces for nine weeks, although it seems longer. What surgical procedure(s) are you having done? Do you have an underbite, overbite, crossbite, openbite...? I will be having a BSSO (Bilateral Sagittal Split (Ramus) Osteotomy) and a LeFort 1- piece (Maxillary Osteotomy) in June 2006. I not only have an underbite (Mandibular Hyperplasia) but also an underdeveloped upper jaw (Maxillary Hypoplasia) and my resting smile shows only lower teeth so I will also be having my upper jaw dropped down in front. I meet with my OMS in December to finalize the surgery on the upper jaw, but I feel it is a no-brainer and my surgeon told me at my last appointment that he was almost certain that it would be warranted. My Orthodontist originally told me that I would have braces pre-op for 12 months, but at my consult with him he stated that it would be up to ten months pre-op. If your teeth move like crazy, you might find yourself going to surgery alot sooner. My teeth are moving all the time and my OD was so pleased with my progress he changed my archwires at the four and eight-week adjustment appointments. He started me out in #14's, then changed to #16's, and last Tuesday changed to a #17 nickel-titanium on top, and a #16 stainless-steel on the bottom. He also put powerchains in between my two upper front teeth and also on the entire bottom. They are used to close gaps. Do you have Continuous Force Wires? - they are great but your teeth hurt (ache) all the time.// I find I have trouble eating, or rather, biting into food - my teeth are always hurting. I've been eating soft foods, like macaroni and cheese. This past weekend I made a pot of Chili Mac (Macaroni & Cheese, with a can of Chili added)- yum!// About your concerns regarding being wired shut, that all depends on the procedure and your Surgeon's preferences. If you are having lower surgery, the only procedure for mandibular set-back that requires being wired shut is the I.V.R.O. or IntraOral Vertical Ramus Osteotomy. If you will be having the BSSO you may not have to be wired shut, but this is something you will need to discuss with your Surgeon. These days, more and more surgeons are splinting and banding their patients shut; that is what I will be having. I have heard that the healing process is longer with wiring. But, again, this is something to discuss with your Surgeon.// If you are having upper or both upper and lower procedures, you will probably get an NG (Naso-gastric) tube placed while you are under anesthesia; it's there to prevent you from vomiting while in surgery and afterward by aspirating your stomach of any blood that gets down there. At the time of surgery, you won't have any food in your stomach, and for the first four or more weeks you will be on a liquid diet, so anything you vomit up will be in liquid form. You should tell your Surgeon about the Claustrophobia however.// If your braces feel like they are digging into your tongue, the wire might have worked itself out of your bracket(s) in the back, and you will need to get it put back. Try ortho wax first, and feel back there with your finger: if you feel a sharp point, then your wire is out. I had this problem just last week - my wire was actually digging into my cheeks - ouch! My OD twisted the wire out of the way, and while he was there, retightened my lower wire! Ouch!// Well, this turned out to be a longer post than I had planned. Hope some of the info is helpful. You joined a great group - people here are very helpful - you are not alone. Take care and again, welcome! ~~~~ Diane (Idaho) > > Hi there, my name is and I'm new to the group. I'm 45 years > old, from New Zealand but I live in Hong Kong. I've just had my > upper braces fitted on Friday, 7 October after a lot of consulations > to find the right orthodontist/surgeon. The braces are a little sore > (mostly just uncomfortable) but not as bad as the spacers I had > fitted the week before. I'm due to have the lower braces fitted in > three weeks. > After maybe 1 year to 18 months (I hope) in braces, I will be having > jaw surgery. I'm having all the treatment done in Bangkok as the > facilities are excellent and the fees are a lot less than in Hong > Kong. I'm already a little worried about the procedure, especially > being wired after surgery. I've yet to ask my surgeon about this. > Can anyone tell me, does everyone get wired or just some cases, ie > surgery on lower jaw only doesn't get wired. I'm already a little > claustrophobic and the thought of not being able to breath is > terrifying me, let alone having to vomit through a wired mouth. > > Also, I'm having a bit of trouble eating at the moment, any recipes > or suggestions as to what I can get down right now would be great. > The main problem is swallowing, if feels like the braces on the back > are digging into my tongue. > Thanks for your help and I look forward to being a regular on this > site. > Regards > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 Hi Kim. I have twins that will be 2 in a couple of weeks and I am also new to the group. Sydney has RSS while Leah has been unaffected. I breastfed the twins for about 9 months. There was a lot of concern about Sydney's development and her size but she wasn't actually diagnosised until several weeks ago. Our problem was that we couldn't supplement because from day one Sydney would not take a bottle or a sippy cup. We really tried with the bottle but I think we forced the issue too much because she just stopped feeding all together at 9 months. At that point we started using the high calorie formula as well but we had to spoon it in to her mouth until she learned to use a sippy cup. I remember how important breast feeding was to me with Sydney and how I was so upset that she wasn't growing. If I had known then what I know now, I probably would have been less concerned about breastfeeding. Don't get me wrong, I still think it is important but with all of the feeding issues that we have had since I just have a different perspective on it now. Bottom line is that I learned to work with her schedule (as much as possible) and took advantage of the times she would eat so that I didn't get as uptight the times that she didn't. Sydney never did react well to being asked to do something she doesn't like. She is doing great now. She has just reached 20 pounds which sounds tiny but it took us 5 months to get from 11 to 13 pounds. We were at the point that they were going to use a feeding tube but the doctors tried a motility drug which worked wonders for her. These days she eats everything. She is gaining but slowly. She has to eat much more than Leah to put on the same amount of weight. Some meals she will drink 10 oz and others we struggle to get 1oz into her. Again, we go with her favorite foods. We tried adding the cream and butter to everything to boost the calories and it certainly helped us in getting past that critical time when she was not gaining anything. It doesn't work so well anymore because she doesn't like rich foods (probably due to all of the extra stuff we put in it for so long). You are lucky to get the diagnosis so early. Sydney was 22 months before we did and we spent many months not knowing why she wasn't gaining weight and why she wasn't meeting her gross motor mile stones. She had tests upon tests and many meetings with specialists. Not knowing is much worse. Good luck with everything and please feel free to contact me if you have any questions. Beth new to group Hi my name is Kim I have three sons the youngest is he is 12 weeks and is being followed for suspected RSS. He was born 12/9/05 at 36 weeks weighing 3#12oz and 16.5 inches long. He has curved pinky fingers which is one of the main reasons they began to suspect it. We've been denying that this is the case. Today we went back to our geneticist who still says this is RSS. He weighs 7#2oz and is 20.5 inches long. That seems like a great weight gain and growth to us! I guess I'm wondering if there are varying degrees of RSS? He is breastfed but we also give bottles of expressed milk with 22 calorie formula mixed in. He doesnt have a huge appetite but today because we were away from home he has had 4 bottles of 3oz each which is alot for him. The geneticist said there is no test to give him that we'll just have to watch and see. She's doing a followup u/s on his abdomen and kidneys (his first was fine) but she wants to follow him for something to do with his kidneys (tumors?). We see her again at a year. I am looking forward to getting to know more about RSS and getting to know more parents dealing with this. Thanks for any BTDT advice or stories you'd be willing to share. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 Hi, Sweating can be a sign of hypoglycemia (low blood sugar). CAll your endo and make sure she constantly has food in her system. This is commone with RSS /SGA kids and can stunt brain growth if untreated... MEgan, mom to 6 and Emerence 3 > Hi my name is Kim I have three sons the youngest is he is > 12 weeks and is being followed for suspected RSS. He was born 12/9/05 > at 36 weeks weighing 3#12oz and 16.5 inches long. He has curved pinky > fingers which is one of the main reasons they began to suspect it. > We've been denying that this is the case. Today we went back to our > geneticist who still says this is RSS. He weighs 7#2oz and is 20.5 > inches long. That seems like a great weight gain and growth to us! I > guess I'm wondering if there are varying degrees of RSS? He is > breastfed but we also give bottles of expressed milk with 22 calorie > formula mixed in. He doesnt have a huge appetite but today because we > were away from home he has had 4 bottles of 3oz each which is alot for > him. The geneticist said there is no test to give him that we'll just > have to watch and see. She's doing a followup u/s on his abdomen and > kidneys (his first was fine) but she wants to follow him for something > to do with his kidneys (tumors?). We see her again at a year. I am > looking forward to getting to know more about RSS and getting to know > more parents dealing with this. Thanks for any BTDT advice or stories > you'd be willing to share. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 Hi! HOpe you can come to the convention in July - it is a lifesaver! My daughter Emerence is SGA (small for gestational age) which I call RSS but without the " face " (triangular). She is small for her age and has many characteristics of RSS but is mild. There are varying degrees and good news, tumors really are not considered to be associated with RSS anymore. You should be concerned with hypoglycemia (low blood sugar) and watch for signs of that. I fed my daughter every 2-3 hours until she was about 6 months old and then every night at 2 am until she was about 20 months old (when she got older she would drink a yougurt and cream mixture at night). Emerence has had 4 sets of ear tubes and a partial adenoidectomy and had low muscle tone. You should have evaluated by Early Intervention for services - he should qualify just by being born so small. The sooner you start the better he will be. I believe it is free in every state until the child is 3. My son had PT 3x a week (he had just severe hypotonia) and my daughter got PT startign at 3 months 2 x a week and then OT for feeding at about 10+ months. This helped her hit a lot of milestones without too mcuh delay (she walked at 17 months). WElcome!!! > > Hi my name is Kim I have three sons the youngest is he is > 12 weeks and is being followed for suspected RSS. He was born 12/9/05 > at 36 weeks weighing 3#12oz and 16.5 inches long. He has curved pinky > fingers which is one of the main reasons they began to suspect it. > We've been denying that this is the case. Today we went back to our > geneticist who still says this is RSS. He weighs 7#2oz and is 20.5 > inches long. That seems like a great weight gain and growth to us! I > guess I'm wondering if there are varying degrees of RSS? He is > breastfed but we also give bottles of expressed milk with 22 calorie > formula mixed in. He doesnt have a huge appetite but today because we > were away from home he has had 4 bottles of 3oz each which is alot for > him. The geneticist said there is no test to give him that we'll just > have to watch and see. She's doing a followup u/s on his abdomen and > kidneys (his first was fine) but she wants to follow him for something > to do with his kidneys (tumors?). We see her again at a year. I am > looking forward to getting to know more about RSS and getting to know > more parents dealing with this. Thanks for any BTDT advice or stories > you'd be willing to share. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Hi thanks for your info! Where is the convention? I couldnt read the file at magic foundation. I have a horrible time waking him to eat at night. He is like dead to the world. I do try and he takes very little. Any tips on waking a sleepy baby? We do feed him every 2-3 hours unless he shows hunger cues earlier (rare). He doesnt cry to be fed often. Good news on the tumors! has been with early intervention since five weeks of age. He has an OT twice a month though we're looking at increasing it to weekly if he doesnt show alot of progress with head control w/in the next two weeks. He is very alert, coos, giggles, and smiles at us so he's reaching those milestones. Its just the large motor group right now. Thank you again! Kim > Hi! HOpe you can come to the convention in July - it is a > lifesaver! My daughter Emerence is SGA (small for gestational age) > which I call RSS but without the " face " (triangular).  She is small > for her age and has many characteristics of RSS but is mild. There > are varying degrees and good news, tumors really are not considered > to be associated with RSS anymore. > > You should be concerned with hypoglycemia (low blood sugar) and > watch for signs of that. I fed my daughter every 2-3 hours until > she was about 6 months old and then every night at 2 am until she > was about 20 months old (when she got older she would drink a > yougurt and cream mixture at night). > > Emerence has had 4 sets of ear tubes and a partial adenoidectomy and > had low muscle tone. You should have evaluated by Early > Intervention for services - he should qualify just by being born so > small. The sooner you start the better he will be. I believe it is > free in every state until the child is 3. My son had PT 3x a week > (he had just severe hypotonia) and my daughter got PT startign at 3 > months 2 x a week and then OT for feeding at about 10+ months. This > helped her hit a lot of milestones without too mcuh delay (she > walked at 17 months). > > WElcome!!! > > > > > > > > Hi my name is Kim I have three sons the youngest is > he is > > 12 weeks and is being followed for suspected RSS. He was born > 12/9/05 > > at 36 weeks weighing 3#12oz and 16.5 inches long. He has curved > pinky > > fingers which is one of the main reasons they began to suspect it. > > We've been denying that this is the case. Today we went back to our > > geneticist who still says this is RSS. He weighs 7#2oz and is 20.5 > > inches long. That seems like a great weight gain and growth to us! > I > > guess I'm wondering if there are varying degrees of RSS? He is > > breastfed but we also give bottles of expressed milk with 22 > calorie > > formula mixed in. He doesnt have a huge appetite but today because > we > > were away from home he has had 4 bottles of 3oz each which is alot > for > > him. The geneticist said there is no test to give him that we'll > just > > have to watch and see. She's doing a followup u/s on his abdomen > and > > kidneys (his first was fine) but she wants to follow him for > something > > to do with his kidneys (tumors?). We see her again at a year. I am > > looking forward to getting to know more about RSS and getting to > know > > more parents dealing with this. Thanks for any BTDT advice or > stories > > you'd be willing to share. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Hi Beth, I also have twins they are 9 months. Cole is non RSS and Chloe does have RSS. I agree that not knowing is the worst. I suspected RSS shortly after birth because in my husbands family RSS is inherited. I know that this is almost unheard of but it's there. 5 out 3 sisters have RSS the smallest is 4'6 " and 65 lbs. 2 days before my twins were born his sisters informed me of this so when the were born I looked for signs. She was 2lb 10oz and her brother was double and curved pinkies clued my husband and I. The special care drs had no knowledge of RSS and dismissed it. Chloe pediatric dr also said she didn't think she had it. But when Cole grow steadily and Chloe grow but at a very slow rate in the 2 percentile they couldn't figure out why. That's when they sent us to a geneticist and he confirmed what we thought already that she has RSS. Chloe as well will drink 4-6 oz at a time and other times will drink 1-2 oz but always eats high calorie jar food like she can't get enough (it has to be want she likes though.) I'm convinced that she doesn't like formula. If you have any tips or advice let me know. Lori (mom of twins Cole nonRSS Chloe RSS - 9 months) Beth and Jay wrote: Hi Kim. I have twins that will be 2 in a couple of weeks and I am also new to the group. Sydney has RSS while Leah has been unaffected. I breastfed the twins for about 9 months. There was a lot of concern about Sydney's development and her size but she wasn't actually diagnosised until several weeks ago. Our problem was that we couldn't supplement because from day one Sydney would not take a bottle or a sippy cup. We really tried with the bottle but I think we forced the issue too much because she just stopped feeding all together at 9 months. At that point we started using the high calorie formula as well but we had to spoon it in to her mouth until she learned to use a sippy cup. I remember how important breast feeding was to me with Sydney and how I was so upset that she wasn't growing. If I had known then what I know now, I probably would have been less concerned about breastfeeding. Don't get me wrong, I still think it is important but with all of the feeding issues that we have had since I just have a different perspective on it now. Bottom line is that I learned to work with her schedule (as much as possible) and took advantage of the times she would eat so that I didn't get as uptight the times that she didn't. Sydney never did react well to being asked to do something she doesn't like. She is doing great now. She has just reached 20 pounds which sounds tiny but it took us 5 months to get from 11 to 13 pounds. We were at the point that they were going to use a feeding tube but the doctors tried a motility drug which worked wonders for her. These days she eats everything. She is gaining but slowly. She has to eat much more than Leah to put on the same amount of weight. Some meals she will drink 10 oz and others we struggle to get 1oz into her. Again, we go with her favorite foods. We tried adding the cream and butter to everything to boost the calories and it certainly helped us in getting past that critical time when she was not gaining anything. It doesn't work so well anymore because she doesn't like rich foods (probably due to all of the extra stuff we put in it for so long). You are lucky to get the diagnosis so early. Sydney was 22 months before we did and we spent many months not knowing why she wasn't gaining weight and why she wasn't meeting her gross motor mile stones. She had tests upon tests and many meetings with specialists. Not knowing is much worse. Good luck with everything and please feel free to contact me if you have any questions. Beth new to group Hi my name is Kim I have three sons the youngest is he is 12 weeks and is being followed for suspected RSS. He was born 12/9/05 at 36 weeks weighing 3#12oz and 16.5 inches long. He has curved pinky fingers which is one of the main reasons they began to suspect it. We've been denying that this is the case. Today we went back to our geneticist who still says this is RSS. He weighs 7#2oz and is 20.5 inches long. That seems like a great weight gain and growth to us! I guess I'm wondering if there are varying degrees of RSS? He is breastfed but we also give bottles of expressed milk with 22 calorie formula mixed in. He doesnt have a huge appetite but today because we were away from home he has had 4 bottles of 3oz each which is alot for him. The geneticist said there is no test to give him that we'll just have to watch and see. She's doing a followup u/s on his abdomen and kidneys (his first was fine) but she wants to follow him for something to do with his kidneys (tumors?). We see her again at a year. I am looking forward to getting to know more about RSS and getting to know more parents dealing with this. Thanks for any BTDT advice or stories you'd be willing to share. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 My daughter, five months old, is being treated at Cook's by Dr. Messer's partner, Dr. Hamilton. I have met Dr. Messer once when had a pressure sore from the brace and Dr. Hamilton was out of the office so we saw Dr. Messer instead. He and Dr. Hamilton have been trained in the Ponseti method at a conference done by Dr. Ponseti in Iowa a few years ago. If you have more questions, please feel free to contact me privately. I love Dr. Hamilton. He is a very sweet man. Our experience at Cook's has been overall very positive. Carol and , bcf, 10-27-05 new to group Our son was born on April 6, 2006. His foot is turned inward sightly. We are to see a specialist in Fort Worth, Texas at Cook's Children's Hospital next week. The doctor's name we are seeing is Dr. Messer. I think we are doing the Ponseti method. Has anyone ever heard of this doctor or had any experience taking their child to Cook's for this foot problem? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2006 Report Share Posted April 13, 2006 Welcome to the board and congratulations on your son! I have not heard of any doctors using the method in Fort Worth or the hospital that you mentioned. The only Texas doctor on Dr. Ponseti's list is Dr. Lund. G. Lund, DPM 4351 Booth Calloway, Suite 304 North Richland Hills TX76180 Tel: slund@... What I would recommend is that you utilize the parents' check list on this site: http://members.tripod.com/ponseti_links-ivil and arrange to interview this Dr. Messer prior to consenting to let him/her treat your son. It is important to understand if the doctor is following the method correctly, because improperly applied casts can actually do more harm than good. There is a good technical booklet published by the Global HELP organization (you can get to it on the medical journals section at the above site) that you can print off and review with the doctor to have them tell you if they follow that protocol exactly or deviate in any way. There is one doctor in Dallas who might be using the Ponseti method correctly, Dr. Podeszwa. He was using the method when he was in Detroit (he treated the Coburn's son- you can see their recent posts under the Michigan doctors thread), but I am unsure now that he's relocated what he offers. Please continue to ask questions if you have any, and we'll help you the best we can in finding the best doctor for your son. My advice is to *not* rush into treatment, take the time to find a doctor that knows what they're doing and that you trust 100%. A few weeks of delay in starting treatment will be better than starting off with the wrong doctor....there are *many* of us here that can attest to that! My own daughter went through nearly 4 months of treatment before we switched to Dr. Ponseti! Best wishes, & (3-16-00, left clubfoot) http://ponseticlubfoot.freeservers.com/ > > Our son was born on April 6, 2006. His foot is turned inward sightly. > We are to see a specialist in Fort Worth, Texas at Cook's Children's > Hospital next week. The doctor's name we are seeing is Dr. Messer. I > think we are doing the Ponseti method. Has anyone ever heard of this > doctor or had any experience taking their child to Cook's for this foot > problem? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2006 Report Share Posted May 24, 2006 Anju- Welcome to the group! My son was in daycare(still is) during the whole hour reduction process. After the 3 months-our doctor had david go 3 more months at 20 hours(which put him to 9 mo of age). At 9 months we were reduced to 16 hours and at 1 year-once he became weight bearing on his feet we were reduced to 14 hours. Now that he is walking(at 20 months)-he wears them 12 hours a day(night only). We basically had the daycare take the shoes off at a prescribed time. If it was 20 hours-we had them remove at 2pm(since his bedtime was at 6pm). Our daycare was great about it-and even called me twice when I had forgotten to grab the fab at the end of day as they too know/knew how important the brace is! hth, kathleen mom to david bcf fab 12/7 > > Hi, > > I just joined the group today and i have a question. My son is almost > 5 months old and has bilateral clubfeet. He's been wearing the Dennis > Browne shoes for 3 months now, for 22-23 hours a day. I wanted to know > when he goes to wearing the shoes for night time only, for how many > hours a day does he need to wear them? Does he need to wear it during > the day at nap time also? > Have any of you had any issues with sending your kids to day care and > them having to wear these shoes? > I'd really appreciate your responses to this... > > Thank you > Anju > Quote Link to comment Share on other sites More sharing options...
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