Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 I am ssooo sorry for your loss. How terrible for you and hubby. The vitamins I was on TTC and thur pregnancy are- folic acid, prenatal vitamins, regular multi vitamin w/ iron, sublingual b-12 and calcium citrate. good Luck TTC and definately put it in Gods hands, I did after many years of infertilty and now have 4 children. God Bless, Robin Wife to Pup for 15 years Mommy to- and (twin boys, 8 years) and Daughter Madison- age 5 1/2 and new Mommy to- Emerson Roger born July 28, 2004 at 4:11 am 8lbs 7 oz, 20 1/2 inches long. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 I am ssooo sorry for your loss. How terrible for you and hubby. The vitamins I was on TTC and thur pregnancy are- folic acid, prenatal vitamins, regular multi vitamin w/ iron, sublingual b-12 and calcium citrate. good Luck TTC and definately put it in Gods hands, I did after many years of infertilty and now have 4 children. God Bless, Robin Wife to Pup for 15 years Mommy to- and (twin boys, 8 years) and Daughter Madison- age 5 1/2 and new Mommy to- Emerson Roger born July 28, 2004 at 4:11 am 8lbs 7 oz, 20 1/2 inches long. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Hi Mandy, I have been in several similar situations as you. I know how tough it can be ttc for so long and losing the baby premature. If you want to e-mail me private to talk, feel free at any time. SMcda16240@.... Also, you may want to check out a website that might help, it is for infant loss, preterm, miscarriage, stillborn. You may not be ready now, but keep it in mind. It really has helped me. www.shareatlanta.org Sorry I can't help you with the vitamin list either. I just wanted to let you know you are not alone. I am sorry for your loss. Take care and get lots of rest. It will take time to heal, but you will never forget. I really like the name you chose. She will be forever in your heart. Sharon in GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Hi Mandy, I have been in several similar situations as you. I know how tough it can be ttc for so long and losing the baby premature. If you want to e-mail me private to talk, feel free at any time. SMcda16240@.... Also, you may want to check out a website that might help, it is for infant loss, preterm, miscarriage, stillborn. You may not be ready now, but keep it in mind. It really has helped me. www.shareatlanta.org Sorry I can't help you with the vitamin list either. I just wanted to let you know you are not alone. I am sorry for your loss. Take care and get lots of rest. It will take time to heal, but you will never forget. I really like the name you chose. She will be forever in your heart. Sharon in GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Hi Mandy, I can't help you with the vitamin issue, but I just wanted to say that I am so sorry for your loss. Those words sound really inadequate... Madison Grace is a beautiful name. Meredith S. --- mandy johnson wrote: > My name is Mandy and I am new to the group. I > recently had a daughter, Madison Grace on June 23. > I went into preterm labor at 5 months and she was > delievered 8 ounces and 8 1/2 inches. I was > expecting her not to even be born alive because she > would be so tiny, to my amazement she lived 6 hours. > My husbnad and I are not going to be using anything > for contraception, we are going to put it in god's > hand if he wants us to get pregnant soon it will > happen. After almost 5 years of ttc this has been > one of the most difficult times of my life, but > having great friends and family make it alot easier > to handle. My question is I have misplaced my list > of vitamins we are suppose to take on daily basis > and was wondering if anyone here had a list. Thanks > so much!! > > Mandy > bypass 04/2003 > 331/190/165 > > > > --------------------------------- > Do you Yahoo!? > Win 1 of 4,000 free domain names from Yahoo! Enter > now. > > [Non-text portions of this message have been > removed] > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Hi Mandy, I can't help you with the vitamin issue, but I just wanted to say that I am so sorry for your loss. Those words sound really inadequate... Madison Grace is a beautiful name. Meredith S. --- mandy johnson wrote: > My name is Mandy and I am new to the group. I > recently had a daughter, Madison Grace on June 23. > I went into preterm labor at 5 months and she was > delievered 8 ounces and 8 1/2 inches. I was > expecting her not to even be born alive because she > would be so tiny, to my amazement she lived 6 hours. > My husbnad and I are not going to be using anything > for contraception, we are going to put it in god's > hand if he wants us to get pregnant soon it will > happen. After almost 5 years of ttc this has been > one of the most difficult times of my life, but > having great friends and family make it alot easier > to handle. My question is I have misplaced my list > of vitamins we are suppose to take on daily basis > and was wondering if anyone here had a list. Thanks > so much!! > > Mandy > bypass 04/2003 > 331/190/165 > > > > --------------------------------- > Do you Yahoo!? > Win 1 of 4,000 free domain names from Yahoo! Enter > now. > > [Non-text portions of this message have been > removed] > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 My son was born 5 weeks premature weighing 4lbs 13oz on September 7th 2004. While he was in the NICU, I was told there is a slight chance that he has Russel-Silver Syndrome, based on some of his physical attributes such as a small chin, low set ears, and hypospadias. I was told that this syndrome would not effect his learning abilities. I have to take him to a genetic counselor on October 22nd. Are there any questions I should ask the counselor? I am anxious and don't know what to expect. I have been doing some online research but there seems to be little detailed information out there. Any feedback would be appreciated. Robyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 Robyn, At this young age, it is VERY important to discuss the possibility/probability that your son has some form of hypoglycemia. Many doctors are not aware that this is part of RSS, so the babies are not fed properly through the night. As a result, many RSS kids have learning disabilities of varying degrees. So PLEASE check on this and insist that if your son has RSS, he MUST be fed every couple of hours through the night. I can tell you more later, but at this point, this is the most important thing to focus on. Jodi Z. Mom of Maxwell-16, RSS and Jenna -19, no RSS but an attitude Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 Hi Robyn and welcome to the group. I am sure you will get many responses to your post. Everyone here is VERY helpful and open. I think in order for you to be prepared for your genetics appointment is to educate yourself. What you need to do is go to www.magicfoundation. org (no spaces). They have a bunch of information there. There is a wide variance in the severity of children with RSS. Some kids on here are mild cases, and others are severe cases. I have a two year old son named . He is on the severe end of the spectrum. But, he is doing rather well. we just needed to find the right amount of calories for him so that he could gain weight. We found out when he was 17 months old that he has RSS, so you finding out now is awesome. There are no true tests for RSS. There is one test called the UPD7 study, that the geneticist may suggest to you, but by no means give you a definite answer. A negative result doesn't mean he doesn't have RSS. Tends to be the more milder RSS kids that test positive for that. Others can tell you more about that though. In all honesty, you will learn more from this site than you will learn from a doctor. Everyone here is so informative. My experience was not a great one with 's genetist. She did the UPD7 study and when it came back normal, she dropped the ball. Like that was the end all test and he didn't have it. I had to go all the way to New York City from Ohio to get his diagnosis from Dr. Madeleine Harbison. She is and endocrinologist that specializes in - Silver kids. She loves them and has about 130 or so patients that go to her from all over the states. We would love you to give us more information on your son. You are right about the syndrome not affecting his cognitive ablilities. They have normal intelligence. The only thing you need to be awar of is that some of the RSS children have episodes of low blood sugar, also called hypoglycemia, that if left undetected can case some problems with brain development. If they don't eat enough or go without eating for long periods of time, hypoglycemia will occur. Not all RSS kids have this, but a lot do. You may want to find out if may have this. Please feel free to ask any questions or voice any concerns you may have. This is the place to do it, and no question is dumb. We have all been in your shoes, and are more than eager to help someone new to the listserve out. I hope I haven't overloaded you too much. I am sure others will post and give you more info. or expand on mine. I hope all goes well for you and I hope you get a diagnosis for your son soon. take care, Jodi R. > > My son was born 5 weeks premature weighing 4lbs 13oz on > September 7th 2004. While he was in the NICU, I was told there is a > slight chance that he has Russel-Silver Syndrome, based on some of > his physical attributes such as a small chin, low set ears, and > hypospadias. I was told that this syndrome would not effect his > learning abilities. > > I have to take him to a genetic counselor on October 22nd. > > Are there any questions I should ask the counselor? > I am anxious and don't know what to expect. > > I have been doing some online research but there seems to be little > detailed information out there. Any feedback would be appreciated. > > Robyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 Thank you Jodi. I was told that I must feed at least every three hours at this point. has been gaining weight nicely. He was up to 6 pounds 3 ounces this past week. I am feeding him mostly (pumped) breast milk with one or two supplements of formula daily. His muscle tone seems very good- he is able to lift his head when he is on his tummy and even turned himself from his stomach to back during our pediatrician visit. I think this is good considering he wasn't supposed to be born until October 11th. He did have problems with feeding the first few weeks, he kept falling asleep during feedings and refused to open his mouth, but this has improved tremendously. He is now taking about 3oz every 3 hours. I hope this is frequent enough. He usually does not wake up on his own toeat, so we have to wake him for feedings. has acid reflux and has to take a medication called Zantac three times a day. The medication is working great. Robyn > > Robyn, > > At this young age, it is VERY important to discuss the > possibility/probability that your son has some form of > hypoglycemia. Many doctors are not aware that this is part of RSS, > so the babies are not fed properly through the night. As a result, > many RSS kids have learning disabilities of varying degrees. So > PLEASE check on this and insist that if your son has RSS, he MUST be > fed every couple of hours through the night. > > I can tell you more later, but at this point, this is the most > important thing to focus on. > > Jodi Z. > Mom of Maxwell-16, RSS and Jenna -19, no RSS but an attitude Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 Oh, yes, Robyn, I know too well about reflux. My son STILL has it. He takes Protonix in the morning and Prevacid in the afternoon. I did not mention it in my earlier post because I was hoping you did not have to face that, too. Frequent feedings are hard enough! I'm glad that is so strong and gaining well. Let us know how the doctor appointment goes, okay? Jodi Z. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 Welcome to the group! I have a daughter - born Sept 8th 2003 weighing in at 4# 10oz - full term to the day! She initially was low tone - but has perked up nicely since. I know at 6 weeks she was no where close to holding her head up on her tummy - so your son sounds like he is doing well. I think you have already gotten a lot of responses re: hypoglycemia and feeding through the night - this would probably be my first concern and suggestion to you. We allowed our daughter to sleep through the night at about 6 weeks old because we didn't know about low blood sugar and all. I would also suggest getting your son involved with infant development - run through our county - they come out to your home and offer free therapy intervention services. In our state - that automatically qualifies for medicaid and WIC (we got formula paid for since we were having to make it extra strength!) Anyway - a great, free resource for you. I know this can be stressful - you are fortunate to find these things out early though! Good luck at your appt. Jane, mom to -SGA ?RSS 1 yr 13# 14oz, 26 " , Gavin 4 yrs nonRSS, Aidan 2yrs nonRSS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 hey robyn!!! welcome to this great group!!! i see you have had a lot of responses and i just wanted to say HI and welcome!! good luck!!! jodie c. > > My son was born 5 weeks premature weighing 4lbs 13oz on > September 7th 2004. While he was in the NICU, I was told there is a > slight chance that he has Russel-Silver Syndrome, based on some of > his physical attributes such as a small chin, low set ears, and > hypospadias. I was told that this syndrome would not effect his > learning abilities. > > I have to take him to a genetic counselor on October 22nd. > > Are there any questions I should ask the counselor? > I am anxious and don't know what to expect. > > I have been doing some online research but there seems to be little > detailed information out there. Any feedback would be appreciated. > > Robyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 Thanks Jodi R. I live in NY so if it turns out my son has RSS, I will definitely contact Dr. Harbison. Robyn > > > > My son was born 5 weeks premature weighing 4lbs 13oz on > > September 7th 2004. While he was in the NICU, I was told there is a > > slight chance that he has Russel-Silver Syndrome, based on some of > > his physical attributes such as a small chin, low set ears, and > > hypospadias. I was told that this syndrome would not effect his > > learning abilities. > > > > I have to take him to a genetic counselor on October 22nd. > > > > Are there any questions I should ask the counselor? > > I am anxious and don't know what to expect. > > > > I have been doing some online research but there seems to be little > > detailed information out there. Any feedback would be appreciated. > > > > Robyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 Hi! I just wanted to say welcome to the group! I have learned so much more here than what I have learned from his doctor.My son has a mild form of RSS, and does not have a big problem with hypoglycemia, but he still gets his blood sugar checked on a regular basis. Also, it can take a while to get the " diagnosis " my son didn't get his until seeing Dr. Harbison. Good luck, and if you have any questions, feel free to ask, everyone is very open and helpful. le mom to Datreon 12months, 14lb 12oz, 25.5in Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 Hi Robyn Welcome to this group. Quite a few of us have been to the genetic group at New York Presbyterian. Where are you taking ? If you do go to NYP, the genetic counsellors do a great job explaining everything before and after you meet with the doctor. Good luck, Malathi > > > > My son was born 5 weeks premature weighing 4lbs 13oz on > > September 7th 2004. While he was in the NICU, I was told there is > a > > slight chance that he has Russel-Silver Syndrome, based on some of > > his physical attributes such as a small chin, low set ears, and > > hypospadias. I was told that this syndrome would not effect his > > learning abilities. > > > > I have to take him to a genetic counselor on October 22nd. > > > > Are there any questions I should ask the counselor? > > I am anxious and don't know what to expect. > > > > I have been doing some online research but there seems to be little > > detailed information out there. Any feedback would be > appreciated. > > > > Robyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 I am taking him to a genetic counselor located in Long Island, NY, where the NICU doctor referred me to. Robyn > > > > > > My son was born 5 weeks premature weighing 4lbs 13oz on > > > September 7th 2004. While he was in the NICU, I was told there > is > > a > > > slight chance that he has Russel-Silver Syndrome, based on some > of > > > his physical attributes such as a small chin, low set ears, and > > > hypospadias. I was told that this syndrome would not effect his > > > learning abilities. > > > > > > I have to take him to a genetic counselor on October 22nd. > > > > > > Are there any questions I should ask the counselor? > > > I am anxious and don't know what to expect. > > > > > > I have been doing some online research but there seems to be > little > > > detailed information out there. Any feedback would be > > appreciated. > > > > > > Robyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 Hi Malathi. I have an appointment with Dr. Yeboa in Long Island. I think he is associated with the New York Presbyterian group, but I am not sure. I know he has an office in New York City. Has anyone heard of him?? Robyn > > > > > > My son was born 5 weeks premature weighing 4lbs 13oz on > > > September 7th 2004. While he was in the NICU, I was told there > is > > a > > > slight chance that he has Russel-Silver Syndrome, based on some > of > > > his physical attributes such as a small chin, low set ears, and > > > hypospadias. I was told that this syndrome would not effect his > > > learning abilities. > > > > > > I have to take him to a genetic counselor on October 22nd. > > > > > > Are there any questions I should ask the counselor? > > > I am anxious and don't know what to expect. > > > > > > I have been doing some online research but there seems to be > little > > > detailed information out there. Any feedback would be > > appreciated. > > > > > > Robyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 Hi Robyn, I know that there is at least one other family on the list serve from Long Island who also uses doctors there rather than heading into NYC to see Dr H. Are you going to Schneiders? We live in Westchester, but we both grew up in Queens. Judith, Steve, (RSS) and (non RSS) 4 1/2 year old twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 We are going to see Dr. Yeboa in Mineola in Nassau County, near Winthrop Hospital. Robyn > > Hi Robyn, > > I know that there is at least one other family on the list serve > from Long Island who also uses doctors there rather than heading > into NYC to see Dr H. Are you going to Schneiders? > > We live in Westchester, but we both grew up in Queens. > > Judith, Steve, (RSS) and (non RSS) 4 1/2 year old twins Quote Link to comment Share on other sites More sharing options...
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