Guest guest Posted March 1, 2004 Report Share Posted March 1, 2004 In a message dated 3/1/2004 11:11:12 PM Central Standard Time, veryknowing@... writes: ~Missy Hi Missy!! I am a mother of 3 and two of them have CF. My oldest is 11 and my middle child that does not have CF is 9 (soon to be 10 next Sunday) and my youngest is 6. This is a GREAT support group. We are all eager to learn more about you. Where do you live? We are in Iowa. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2004 Report Share Posted March 1, 2004 Likewise, Missy; we all need to share even if we repeat accounts as the new members have NOT heard it all before! Love to you, and thank you for emerging from lurkerville! n Rojas Hello! I am coming out of lurking status to say hello to everyone here! I have an almost 3 1/2 year old boy w/CF. Diagnosed at 8 months. Looking forward to talking w/all of you! ~Missy ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2004 Report Share Posted March 1, 2004 Hello back at ya Missy! Tell us more about you and your son. My daughter was diagnosed at 8 months also. How did he come to be diagnosed? What is his name? glad you decided to join in! love, M mom of Nick age 21 nocf and age 20 wcf Orange Co CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2004 Report Share Posted March 2, 2004 In a message dated 3/2/2004 10:49:17 AM Central Standard Time, veryknowing@... writes: As for genetics, my little guy shouldn't even have CF..but that's another story in & of itself! He's a double DF508. What do you mean?? I would love to hear the story behind this!! As far as my hands full there are days I want to just run away from everything!! But you just get on this GREAT GROUP and talk to people. There is always someone who will lift your spirit!! And I always thing about Rosemary that has one more CF kid then I do!! And she is the one who usually has her way of lifting everyone's spirit on here! She totally amazes me!! Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2004 Report Share Posted March 2, 2004 Welcome Missy, I have a daughter, 5 with CF, and a son on the way without CF. was 9 months at diagnosis. She was very sick for a while before we knew what was wrong. This is a great group. enjoy, ask any questions you want Hello! I am coming out of lurking status to say hello to everyone here! I have an almost 3 1/2 year old boy w/CF. Diagnosed at 8 months. Looking forward to talking w/all of you! ~Missy ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2004 Report Share Posted March 2, 2004 Wecome Missy! I kinda lurk,too, but welcome! Debbie(Kati's Gram) Hello! I am coming out of lurking status to say hello to everyone here! I have an almost 3 1/2 year old boy w/CF. Diagnosed at 8 months. Looking forward to talking w/all of you! ~Missy ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2005 Report Share Posted June 24, 2005 Hi , Welcome to the group! As you are new, you may be unaware that there is a yearly conference in Chicago run by the Magic Foundation. At this convention you would meet 100+ families who have a child with RSS or SGA and learn everything you ever wanted to know about the syndrome. It is July 21st through the 24th. Contact Magic if it interests you (1800 3MAGIC3). I have a 3 yr old daughter Jillian with RSS (and a 6 yr old son Ethan). Jillie is fed by tube and had surgery to help with her gastrointestinal issues. She is on growth hormone. Please be aware that few RSS children are growth hormone deficient - they are insufficient. What this means is that their growth hormone levels are NORMAL but normal levels are not enough to make them grow. RSS specialists don't always check growth hormone levels because having a normal one doesn't mean they shouldn't be on growth hormone. How big is ? When and how was he diagnosed RSS? Does he eat enough to grow? Other people will be saying Hi. I just wanted to give you the opportunity to get to the convention if possible. The information you receive will change your lives forever. > I am a newbie to this group. > I just found out yesterday that my son has RSS. I am awaiting > his growth hormone test results to see if growth hormone therapy is > required. Just wanted to introduce myself. > > I have two children, Bethany, 5 and , 2. > We live in Atlanta and I am beginning to research any and all avenues > regarding RSS. It is great to be here. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2005 Report Share Posted June 24, 2005 Hi , Welcome to our group. I hope we can answer all your questions. Can I ask a question? Has had a test for UPD#7. This is a test to see if his RSS is caused by having 2 #7 chromosomes from you and none from his father. This is the only conclusive proof of about 10% of the diagnosed RSS cases. The other 90% of RSS cases are idenitified and idiopathic (unknow cause). In your research have you come across the Magic Foundation. It is a nonprofit group based in Chicago. They provide information and assistance with all sorts of growth disorders including RSS. Their annual convention is coming up in late July. Over 100 families with RSS children will be there, many from this list. The Magic Foundation can be found at http:// www.magicfoundation.org The RSS division director, Brock Salem is a memeber of this group. She can answer any question about RSS and Magic. Last, I just wanted to point out that most RSS kids have normal to low normal growth hormone levels. For some reason they do not properly use the growth hormone they have or they produce it at the wrong time of the day (night time is the best, most growing is done while kids sleep). Anyway, even if they have normal levels, they often need extra growth hormone. My son is 8 and he has been getting growth hormone shots for at least 3 years. He is doing great and we have noticed any side affects from this medication. His growthhormone levels tested normal just before we started. I hope this helps and again, welcome to our group. Ken M > I am a newbie to this group. > I just found out yesterday that my son has RSS. I am awaiting > his growth hormone test results to see if growth hormone therapy is > required. Just wanted to introduce myself. > > I have two children, Bethany, 5 and , 2. > We live in Atlanta and I am beginning to research any and all avenues > regarding RSS. It is great to be here. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2005 Report Share Posted June 24, 2005 Hi, I will contact Dahlia's mom Sheryl she is also from Atlanta I believe...welcome! There is a convention in July in Chicago...I went last year for the 1st time, I would recommend trying to come! See info at www.magicfoundation.org. If there are scholarships still left you can get financial assistance (email Dayna Carney) and some states ahve programs to help you pay (see the database folder (I think) for the list). And, if there are still appointments, could be seen by Dr. Harbison, who treats a LOT of the RSS kids. , mom to 5 and Emerence 2, 29 mo. 21 lb 32 " > I am a newbie to this group. > I just found out yesterday that my son has RSS. I am awaiting > his growth hormone test results to see if growth hormone therapy is > required. Just wanted to introduce myself. > > I have two children, Bethany, 5 and , 2. > We live in Atlanta and I am beginning to research any and all avenues > regarding RSS. It is great to be here. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2005 Report Share Posted June 24, 2005 Hi, . Welcome to our group. Where in Atlanta do you live? I went to Emory and then lived in Atlanta/Marietta/Decatur for 8 years afterwards. I loved that city. But I am from NJ and just love NYC too much to be away from it forever. Have you checked out the Magic Foundation's website yet? www.magicfoundation.org. It is a wonderful organization with lots of information, including medical articles and all sorts of things too numerous to mention in the little time I have right now. I'm one of the older members of the group. My son Max will be 17 in a week!!!! (My daughter is almost 20, but she does not have RSS.) I hope that we all can provide you with the information and support that you need. We are like one big family. Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2005 Report Share Posted June 24, 2005 -hi and welcome to this group! any questions you may have feel free to ask, you will definately get a lot of responses, i would definately look into going to chicago next month, and if you can't afford it there are scholarships available, we got one!! just conatact dayna and she will help you! welcome, stephanie kyla 4 RSS jonathan 19 months, bad boy!!!LOL -- In RSS-Support , " " <christinafurman@y...> wrote: > I am a newbie to this group. > I just found out yesterday that my son has RSS. I am awaiting > his growth hormone test results to see if growth hormone therapy is > required. Just wanted to introduce myself. > > I have two children, Bethany, 5 and , 2. > We live in Atlanta and I am beginning to research any and all avenues > regarding RSS. It is great to be here. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2005 Report Share Posted June 25, 2005 , Welcome to the group. You will learn so much here, trust me! ) Everyone is so helpful, so if you have any questions feel free to come and ask away. We were all new to this once ourselves, so we understand the need to ask them! ) I have a son named who is 3. We found out at 17 months that he has RSS. He is on a feeding tube to help him gain weight. But, he has a lot of spunk and is just like any other 3 year old! Ornery! ) If you haven't already, you should check out MAGIC, like the others where talking about. They are so helpful and the infomrtion is priceless. They are the only organization that supports people and parnets dealing with RSS. There is a convention coming up at the end of July in Chicago. There will be an expert in RSS there to have appointments with anyone that desires one. She is awesome and has MANY RSS patients and has been treating RSS kids for years. She has a pretty developed research history going and knows what she is talking about. She took one look at and said he definately has RSS. So, contact MAGIC and if ti is possible, come to the convention. There is scholarships available for first time families that will cover registration and hotel fees. So, if you can, come on to Chicago to ltear even more about RSS. You won't be sorry! ) Take care, Jodi R. , 3 RSS, j tube, reflux, restricted lungs, 23 lbs. 3 oz., 32 " . > I am a newbie to this group. > I just found out yesterday that my son has RSS. I am awaiting > his growth hormone test results to see if growth hormone therapy is > required. Just wanted to introduce myself. > > I have two children, Bethany, 5 and , 2. > We live in Atlanta and I am beginning to research any and all avenues > regarding RSS. It is great to be here. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2005 Report Share Posted June 25, 2005 Welcome to the group. You will not believe the info these people will be able to give you. I am kinda if new too. Wish you best of luck. Amber (Austin 7 non-rss, Grayson 21 months rss-g-tube,meds) wrote:I am a newbie to this group. I just found out yesterday that my son has RSS. I am awaiting his growth hormone test results to see if growth hormone therapy is required. Just wanted to introduce myself. I have two children, Bethany, 5 and , 2. We live in Atlanta and I am beginning to research any and all avenues regarding RSS. It is great to be here. --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2005 Report Share Posted June 28, 2005 Hi ! My name is Barrett. Welcome to our group. I too am new at this. We suspect that our son Crosby may have RSS. He is 1 yr. old and I have daughter, Amelia, who is 2 1/2. I live in Bluffton, SC. which is near Hilton Head. How are you feeling about all of this? I know it can be a little scary and daunting. There is a lot to learn, and it never ends. If I can be of any help/support, please let me know! Wold you possibly be coming to convention? > I am a newbie to this group. > I just found out yesterday that my son has RSS. I am awaiting > his growth hormone test results to see if growth hormone therapy is > required. Just wanted to introduce myself. > > I have two children, Bethany, 5 and , 2. > We live in Atlanta and I am beginning to research any and all avenues > regarding RSS. It is great to be here. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2005 Report Share Posted July 2, 2005 A little late but welcome . I have two daughters is 5 1/2 and Kelli 2 3/4 (she'll be 3 on the 18th). was diagnosed with RSS in October of 2003 by a geneticist and then by an endo in February of 2004. Dr. H who everyone talks about from NYC said no RSS in January of 2005. Although she's not sure why is not growing well. She now has us lined up for further blood testing to see what's going on with her. As you can see by now, this is a wonderful support group with so much to learn. B wrote: I am a newbie to this group. I just found out yesterday that my son has RSS. I am awaiting his growth hormone test results to see if growth hormone therapy is required. Just wanted to introduce myself. I have two children, Bethany, 5 and , 2. We live in Atlanta and I am beginning to research any and all avenues regarding RSS. It is great to be here. --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 I am new to this group and my son was treated successfully with Ponseti. His website is http://cullenjones.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2006 Report Share Posted February 27, 2006 Thanks! Yes, he is doing fine with the DBB. He is so used to it that it is not a big deal. Our Dr said maybe this summer we will be done. Thanks for the links- very helpful! Kristan Re: Hello! Welcome to the group! Thanks for sharing your site. It's always wonderful to hear of yet another doctor who is using the Ponseti method correctly and acheiving these great results. Cullen, by the way, is one handsome little guy. He's almost exactly a month younger than my son. Is he still doing so well and tolerating the FAB/DBB at bedtime? Just so you can update the link on your site, Dr Ponseti's Virtual Hospital site is now at: http://www.uihealthcare.com/topics/medicaldepartments/orthopaedics/clubfeet/inde\ x.html Another site--put together by a parent--that is full of all sorts of information is at: http://members.tripod.com/ponseti_links-ivil/ Naomi The Family Naomi Hannah(2/21/1) Jonah(6/20/3, corrected BCF, FAB 12-14/7) cullenandchloesmom wrote: I am new to this group and my son was treated successfully with Ponseti. His website is http://cullenjones.tripod.com Quote Link to comment Share on other sites More sharing options...
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