Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Hi Corey, yes, there is a convention in Chicago later this month. I am not going so I don't have the dates. The convention is about growth disorders of all sorts and not just RSS. However, RSS is a big part of it. It is put on by the Magic Foundation ( http://www.magicfoundation .org) It is at the O'Hare Marriot. Call Magic for details and registration info. I thin it is about $100 to register at this late date. So far about 37 people from this list will be there. Over 100 families with RSS children have signed up so far. I hope this helps. Ken M > Hi all, > > I just found this support group today, and I must say it's a > blessing. My son was just diagnosed with RSS (9mths...12lbs), and I > have been having so many mixed emotions, it's so wonderful to > actually find a place where (from what I have been reading) I can > actually talked about what I am going through with people that are > going through it and/or have been through it. I have yet to read > all the post, but I keep seeing mention something about Chicago. Is > this a convention or something regarding RSS, because I live in > chicago, and would love to be involved if it's not to late. > > Thanks, > Corey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 The dates of the convention are July 22 to July 24... Welcome to our family... Mom to Liam (3 1/2 years old 34 3/4 " 27 lbs SGA / possible RSS, Hypothyriod, Epilepsy.) Started GHT 5/18/04 and Jed (11 years old) Tourettes, CAPD,SVT. SW Orlando FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Corey, Please read my response to na for more info. The convention dates are July 22-25 and we would LOVE to have you there. Ken is a little behind in his numbers, though. There will be over 125 RSS families there - the largest contingent ever! I'm glad you found us. We are like one big family - we may not always agree, but we are here for each other and that counts more than anything in the world. Jodi Z. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Thank you for all the responses to my questions about the convention, unfortunately we will be out of town that weekend, but now that I have found a new home, my whole family will certainly be there next year. Just to give some insight on my son Justen. He is currently 9mths old, 12lbs. At birth he was 4.5 lbs at 38 weeks. We have had 1-2 hour feedings since birth. He also has reflux, and is on reglan. He has the normal size head with the small body, contracture of the thumb, and inward curving pinky, small jaw, and is starting to have some assymetry in the legs, the right seems to be getting longer then the left. Justen is a very happy baby, UNTIL it's time for food, then we have to fight, he pushes me, hits me, pierces his lips together everything, but as soon as I take the bottle away, he is all smiles. He is currently on 30cl neosure, and eats 2 jrs. of stage 2 food per day. I have been to every doctor, including a genectist, to try and figure out what the problem was. I had never heard of RSS, until a recent visit to a peditric GI, to once again find a solution to the problem, and he mentioned RSS, and found it kind of funny that the genectist did not see this. So now we are waiting for our appt. with the genectist and I am pretty sure he will diagnose Justen with RSS. Are there any other calorie booster out there that we can give a 9mth old? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 I have a daughter 10 months, 12lb 7oz. One thing I have added is the beech-nut brand baby food " first advantage " since your son is eating 2 jars of step 2 foods - the first advantage brand with give you twice the calories as the standard " Gerber " brand - you can order it online at negrocer.com. My daughter likes all the fruits - hates the pasta and vegtable. I have also tasted and it is quite good. I know this is just one simple addition but I figure make every bite count. Good Luck. Jane - mom to " probable RSS " , Gavin and Aidan (nonRSS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 I give my daughter (10 months) the beechnut first advantage foods - they are higher in calories than Gerber by double. For example the Gerber step 2 are 70 calories and the beechnut advantage are 140 and up. I order online because there is not a store near me that carries the brand. You can order online at netgrocer.com - or check the beechnut website to find a store near you that carries it. Good Luck Jane - mom to (Probable RSS) 10 months, 12lb 7oz, 24 1/4 " , Gavin and Aidan, nonRSS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Corey!! welcome to this wonderful group of caring and supportive people!! we are like one big family here and feel free to ask any questions. yes as you probably know now from other responses it is a convention and if you are able to go i cant wait to meet your family!! we are arriving from NJ on wed. morning!! jodie (nicholas-6 nonrss, christopher-3 rss 24lbs 1.7 oz 34 " periactin, ght genotropin(on hold until convention), ADHD(possible), assmentry (left side 1cm), johnathon-1yr nonrss) > Hi all, > > I just found this support group today, and I must say it's a > blessing. My son was just diagnosed with RSS (9mths...12lbs), and I > have been having so many mixed emotions, it's so wonderful to > actually find a place where (from what I have been reading) I can > actually talked about what I am going through with people that are > going through it and/or have been through it. I have yet to read > all the post, but I keep seeing mention something about Chicago. Is > this a convention or something regarding RSS, because I live in > chicago, and would love to be involved if it's not to late. > > Thanks, > Corey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Corey, This reply is kinda late, but welcome to the group. I have a 9.5mos son who is also around 12lb. His geneticist has him drinking a high-calorie juice called Nu-basic. It has to be ordered, but I can give you more info if you're interested. He also eats the beachnut first advantage when he eats baby food. Also, on the babysitting thing, I only allow my mom and 2 of my friends to babysit. If you have any more questions just ask! Hope to hear from ya soon! le (mom to Datreon RSS 9.5mos, 23in, ~12lb, periactin) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2005 Report Share Posted October 7, 2005 My baby () is 1 month old today and he has club feet. He gets his second cast on Monday. The last one was so difficult. He hates when he can't move around when he wants to, so having his legs messed with and held still made him very upset. Of course I was in tears because I thought for sure that it was hurting him and I just wanted to hold and love him and make him feel better. I am so afraid that this is not going to work and he won't be able to walk. He is getting more used to his cast though. The first day was really hard because he always slept with his feet stacked on top of each other on top of his diaper. He got really upset every time he would try to get his legs into that position again. I am hoping to find support here and figure out how I can make him the most comfortable as well. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2005 Report Share Posted October 8, 2005 Hello and Welcome to our group! Congratulations on your new son, also We're here to encourage and support and let you rant and rave when need be too, it's all part of the process. It would help us to offer suggestions for 's comfort if you could tell us just a little more - for example how old was he when he started casting? How often are the casts changed? And are you seeing a real Ponseti doctor (if so can we ask who?). We are all Ponseti fanatics here, I admit - but with good reason. Many of us started out with Non-Ponseti doctors and have soon regretted it and have since then sought to educate ourselves to better methods of treatment (i.e. the Ponseti Method in it's true form). I'm one of those people - I have 2 sons with club feet and have gone both the non-Ponseti and true Ponseti route. Notice I am on the Ponseti board! LOL! Anyway, the casts might annoy your baby but they shouldn't hurt him in any way. If you think it's really pain and not just a little mild annoyance, perhaps we need to dig deeper in to the causes there. Wishing you all the best, s. new mom My baby () is 1 month old today and he has club feet. He gets his second cast on Monday. The last one was so difficult. He hates when he can't move around when he wants to, so having his legs messed with and held still made him very upset. Of course I was in tears because I thought for sure that it was hurting him and I just wanted to hold and love him and make him feel better. I am so afraid that this is not going to work and he won't be able to walk. He is getting more used to his cast though. The first day was really hard because he always slept with his feet stacked on top of each other on top of his diaper. He got really upset every time he would try to get his legs into that position again. I am hoping to find support here and figure out how I can make him the most comfortable as well. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2005 Report Share Posted October 8, 2005 Hi 's Mom, I can relate to how you are feeling. I was a complete wreck with my daughter's first set of casts. She was crying, I was crying, my mother was crying. The doctor must have thought we were crazy! It is ok to cry about this. I'm one of those mothers who believes that manipulating the little feet into casts must hurt. I'm not sure how anyone can say that it doesn't when an infant can't communicate that. However, I do not believe that if there is pain that it is excruciating or anything, more just a discomfort. I understand your concerns, but please try not to worry about your son's future walking. If you are getting him treatment, he will walk, provided there aren't any other medical issues. I have seen pictures of small children with uncorrected club feet who still walk on them. Have faith that his treatment will work and that all of this is harder on you than it is on him. Remember, he really doesn't know any different and babies are so adaptible anyway. Donna Mother to BLCF 11/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2005 Report Share Posted October 9, 2005 Congrats on the birth of your baby! I am also new to the group. My daughter is 8 weeks old tomorrow and had her first cast put on at 9 days old. The casting was rough at times and believe me we all shed a few tears in our family, but the important thing to remember is that with proper treatment they will have perfect little feet! I have really appreciated all of the information from this group and being able to ask any question, no matter how silly it may seeem. I hope you are seeing a doctor who also uses the Ponseti method as Dr. P is amazing and the results are wonderful. My daughter's foot was corrected by Dr. P after 7 casts and started wearing the shoes last week. We are slowly adjusting to this, which caused a few more tears and stress in our family, but I just keep reminding myself that the long term results will be worth all of the uncomfortableness. Good luck and keep us posted on ! Kolby RCF 8/15/05 10/16/02 > > My baby () is 1 month old today and he has club feet. He gets > his second cast on Monday. The last one was so difficult. He hates > when he can't move around when he wants to, so having his legs messed > with and held still made him very upset. Of course I was in tears > because I thought for sure that it was hurting him and I just wanted > to hold and love him and make him feel better. I am so afraid that > this is not going to work and he won't be able to walk. He is getting > more used to his cast though. The first day was really hard because > he always slept with his feet stacked on top of each other on top of > his diaper. He got really upset every time he would try to get his > legs into that position again. I am hoping to find support here and > figure out how I can make him the most comfortable as well. Thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2005 Report Share Posted October 9, 2005 I can compare my two sons on this: , non-ponseti, had to be physically restrained for casting and cried for days afterwards, it was hell. No doubt the child was in PAIN. Everett, Ponseti-method, didn't cry in casting or afterwards. My opinion? Done right it shouldn't hurt. s. > I'm one of those mothers who believes that > manipulating the little feet into casts must hurt. > I'm not sure how anyone can say that it doesn't > when an infant can't communicate that. I've not followed this thread but the above statement caught my eye and I hope you don't mind me replying to it out of context: Basically my son was treated with the Ponseti method and I don't think the treatment hurt him at all. The reason I think that is because he didn't cry and usually fell asleep during the manipulations and casting. I reckon he found it quite soothing... I'm sure this depends on the physician doing it of course... All the best, with (*9/02) and Alister (*9/02, RCF, Ponseti method, UK) ___________________________________________________________ Yahoo! Messenger - NEW crystal clear PC to PC calling worldwide with voicemail http://uk.messenger.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 Hi Donna, -- you wrote: > I'm one of those mothers who believes that > manipulating the little feet into casts must hurt. > I'm not sure how anyone can say that it doesn't > when an infant can't communicate that. I've not followed this thread but the above statement caught my eye and I hope you don't mind me replying to it out of context: Basically my son was treated with the Ponseti method and I don't think the treatment hurt him at all. The reason I think that is because he didn't cry and usually fell asleep during the manipulations and casting. I reckon he found it quite soothing... I'm sure this depends on the physician doing it of course... All the best, with (*9/02) and Alister (*9/02, RCF, Ponseti method, UK) ___________________________________________________________ Yahoo! Messenger - NEW crystal clear PC to PC calling worldwide with voicemail http://uk.messenger.yahoo.com Quote Link to comment Share on other sites More sharing options...
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