Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 Hi everyone! My name is Robin, our sons name is Gino he is 4 1/2 years old. I dont know if I can help anyone but, we've been there done that as far as Gino is concerned. He is 4 1/2 years old, weighs 27 lb., stands about 36 inches tall. He is below the 3rd percentile on the growth chart. We started out looking a RSS but, he just didn't fit the mold. After 40 different doctors, 4 different Hospital, G -Tube feedings, Growth Hormone therapy and a wing and a pray. A doctor at DuPont Hospital in Delaware, MD (we're in Baltimore, MD) figured him out. They think he has a syndrome called Floating Harbor Syndrome (very much like RSS) and we agree. As the say, " he fits into this syndrome very nicely. " I cant even begin to tell you what he and we have been through. First off, for him tube feedings didn't work. He threw up more from force feeding him. Growth Hormones in my opinion, really didn't do much for him either. No, we dont do either of them anymore. Growth hormones may have kept him healthier (maybe) but didn't really improve his growth patterns. He still has a G-Tube only because he receives seizure medication twice a day and Kidney medication three times a day. The tube makes it easier and guaranties that he gets all his meds. We have been searching for answers, much like yourselves for over 3 1/2 years now. If I can help or answer any questions you might have, please write to me at RVFiorenza. That is my E-mail address, I'm writing to you on my husbands E-mail. I understand what you're going through, been through and your need for an answer. Take care, hope to hear from you soon. ROBIN Please write to me personally. Not that I would love to be part of your group, I already belong to a support group for Floating Harbor. Which by the way, has only around 20 diagnosed cases. Never stop looking! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi! Thank you so much for your email. In notes I was reading once about RSS, there were 3-4 other syndromes listed that have similar symptoms to RSS - Floating Harbor being one of them. You are the first family I have actually heard from!!!! > Hi everyone! My name is Robin, our sons name is Gino he is 4 1/2 years old. I > dont know if I can help anyone but, we've been there done that as far as Gino > is concerned. He is 4 1/2 years old, weighs 27 lb., stands about 36 inches > tall. He is below the 3rd percentile on the growth chart. We started out > looking a RSS but, he just didn't fit the mold. After 40 different doctors, 4 > different Hospital, G -Tube feedings, Growth Hormone therapy and a wing and a > pray. A doctor at DuPont Hospital in Delaware, MD (we're in Baltimore, MD) > figured him out. They think he has a syndrome called Floating Harbor Syndrome > (very much like RSS) and we agree. As the say, " he fits into this syndrome > very nicely. " I cant even begin to tell you what he and we have been through. > First off, for him tube feedings didn't work. He threw up more from force > feeding him. Growth Hormones in my opinion, really didn't do much for him > either. No, we dont do either of them anymore. Growth hormones may have kept > him healthier (maybe) but didn't really improve his growth patterns. He still > has a G-Tube only because he receives seizure medication twice a day and > Kidney medication three times a day. The tube makes it easier and guaranties > that he gets all his meds. We have been searching for answers, much like > yourselves for over 3 1/2 years now. If I can help or answer any questions > you might have, please write to me at RVFiorenza. That is my E-mail address, > I'm writing to you on my husbands E-mail. I understand what you're going > through, been through and your need for an answer. Take care, hope to hear > from you soon. ROBIN > Please write to me personally. Not that I would love to be part of your > group, I already belong to a support group for Floating Harbor. Which by the > way, has only around 20 diagnosed cases. Never stop looking! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi! Thank you so much for your email. In notes I was reading once about RSS, there were 3-4 other syndromes listed that have similar symptoms to RSS - Floating Harbor being one of them. You are the first family I have actually heard from!!!! > Hi everyone! My name is Robin, our sons name is Gino he is 4 1/2 years old. I > dont know if I can help anyone but, we've been there done that as far as Gino > is concerned. He is 4 1/2 years old, weighs 27 lb., stands about 36 inches > tall. He is below the 3rd percentile on the growth chart. We started out > looking a RSS but, he just didn't fit the mold. After 40 different doctors, 4 > different Hospital, G -Tube feedings, Growth Hormone therapy and a wing and a > pray. A doctor at DuPont Hospital in Delaware, MD (we're in Baltimore, MD) > figured him out. They think he has a syndrome called Floating Harbor Syndrome > (very much like RSS) and we agree. As the say, " he fits into this syndrome > very nicely. " I cant even begin to tell you what he and we have been through. > First off, for him tube feedings didn't work. He threw up more from force > feeding him. Growth Hormones in my opinion, really didn't do much for him > either. No, we dont do either of them anymore. Growth hormones may have kept > him healthier (maybe) but didn't really improve his growth patterns. He still > has a G-Tube only because he receives seizure medication twice a day and > Kidney medication three times a day. The tube makes it easier and guaranties > that he gets all his meds. We have been searching for answers, much like > yourselves for over 3 1/2 years now. If I can help or answer any questions > you might have, please write to me at RVFiorenza. That is my E-mail address, > I'm writing to you on my husbands E-mail. I understand what you're going > through, been through and your need for an answer. Take care, hope to hear > from you soon. ROBIN > Please write to me personally. Not that I would love to be part of your > group, I already belong to a support group for Floating Harbor. Which by the > way, has only around 20 diagnosed cases. Never stop looking! Quote Link to comment Share on other sites More sharing options...
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