Guest guest Posted February 18, 2001 Report Share Posted February 18, 2001 --- JOstry93@... wrote: > Sharon, I was dx with " Iritis " before the biopsy > even came back. I remember > how very painful it was. It was treated with > steroid eye drops (sorry I cant > remember the name of them). The infection lasted > about 6 or 8 weeks, and > since I was in a major flare at the time (altho I > frankly didn't know what a > flare was), the Opthomologist said it was common > with RP. I wish I could be > of more assistance but I suffer from CRS disease as > well! LOL, Judy O > What is CRS disease? Before treatment I was having chronic " eye infections " according to my PCP at the time. Very painful! The opthalmologist diagnosed the keratoconjunctivitis sicca and has had me on medication every since. I am going to ask him to look at me with RP in mind when I see him later this month. Thanks for your information. Sharon ===== http://www.iwin.com/register.asp?sisterslk (AT) yahoo (DOT) com __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2001 Report Share Posted February 22, 2001 Dawn, you're not the first one this has happened to, I've heard of N-M doing this a few times. Is the recipe worth it? Also what is " blended oatmeal'?? Take care, I am forwarding the recipe to everyone on my email list. LOL, Judy O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2001 Report Share Posted February 22, 2001 In a message dated 02/21/2001 5:26:26 PM Central Standard Time, sisterslk@... writes: << >> Rememberr what?? Careful, it's highly contagious! LOL, Judy O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2001 Report Share Posted February 28, 2001 Dawn, that was so nice. Thank you. I love the jokes and send them on to non-RP friends. I'm glad they come with love, I love you too! LOL, Judy O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2001 Report Share Posted February 28, 2001 Excellent questions demanding answers! What the heck is " onomatopoeia " ? and how is it pronounced? I'll pass these on, maybe someone has some answers - my husband is strange enough to come up with answers.who knows? I really like the one " If love is blind,...) Very cute! LOL, Judy O PSs: You do know I'm kidding when I say maybe I can get some answers, don't you? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2001 Report Share Posted February 28, 2001 Well, my husband, brothers, brothers-in-law, uncles will all appreciate this! LOL, Judy O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2001 Report Share Posted February 28, 2001 judy we all need some answers, dawn --- JOstry93@... wrote: > Excellent questions demanding answers! What the > heck is " onomatopoeia " ? and > how is it pronounced? I'll pass these on, maybe > someone has some answers - > my husband is strange enough to come up with > answers.who knows? I really > like the one " If love is blind,...) Very cute! > LOL, Judy O > > PSs: You do know I'm kidding when I say maybe I can > get some answers, don't > you? > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2001 Report Share Posted March 25, 2001 Good luck we will all be praying for your speedy recovery!! Renae Dr Scholten Grand Rapids Mich 2-27-01 251 lbs currently 235 at last dr's visit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2001 Report Share Posted March 25, 2001 Go get em Glo! Thoughts and prayers will be with you. --- JC5FANS@... wrote: > Hi gang > Tomorrow I will be a packing maniac, lol, so thought > I'd drop by > tonight. Early Tuesday morning Dave & I will set out > for our great > adventure in NYC. My surgery will be Friday, March > 30 with Dr. > Ren at NYU Medical Center. > > > ---------------------------------------------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2001 Report Share Posted December 21, 2001 Hi to the fellow Southern California members. I would be happy to help with transportation for anyone who needs it to get to a support group meeting. I'm not sure how far Thousand Oaks is, but it seems that I heard it was not too far from Pasadena, where I am. Cindy V. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2001 Report Share Posted December 22, 2001 My husband has those dramatic fluctuations. His blood pressure is generally high even with Lisnopril and 80 mg of lasix a day. Even so, he will often have times when his blood pressure drops into the range of 50's. He is very weak and lightheaded on these days. Some times this will be 2-3 days in a row, sometimes, just one day once in a while. He also has the problem (almost to no mobility) of not being able to move feet or losing his balance. He says he feels as though his feet/legs weigh 200+ lbs each. Best wishes to you. Marilyn in TN > > Reply-To: shydrager > Date: Sat, 22 Dec 2001 07:46:47 -0800 (PST) > To: Support Group shydrager > > Subject: (unknown) > > Hi All: > > Bill has his semi annual visit to Dr. Cote on the > 28th. He's been keeping a journal with his bp readings > 3x a day. For the last week and a half, his bp seems > to be high (145/155/160). Of couse, his standing bp > drops 30 to 40 points. On two days, it was 90 sitting > and 65 standing. This latter bp is more like the > readings he has had for the last three year, with > lower readings on some hot days. > > We just don't understand the higher readings this past > week. He is on Florinef and Amantadine. > > Has anyone experienced this fluctuations? I've noticed > less mobility and he says sometimes when he is going > to take a step forward, he can't move his leg. He > loses his balance and goes backwards. > > Aida and Bill > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 Angie Welcome... I've only been a member of this group for less than a month, but even in that short time I know that whatever it is you need to talk about, this is the place to get started. The people here don't invent answers or make things up... they give you the best information they have and if they don't know the answer will send you to where you can go to get it, whether that is on the net or in the world. What is your son's name? I hope we'll hear more from you about your situation soon, and I know you'll find much of what you are looking for here. In the meantime, try reading through the archived messages from the group members... they are at the site where you signed up for the group. Just from reading through a few of them, you can get a feel for the depth of discussion and the experiences of the people here. Jeanne vincesboy2002 wrote: > > Hi i have a son at the age of 4 the might have rss but i need to talk > to someeone can someone contact me please. > > Angie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 Angie Welcome... I've only been a member of this group for less than a month, but even in that short time I know that whatever it is you need to talk about, this is the place to get started. The people here don't invent answers or make things up... they give you the best information they have and if they don't know the answer will send you to where you can go to get it, whether that is on the net or in the world. What is your son's name? I hope we'll hear more from you about your situation soon, and I know you'll find much of what you are looking for here. In the meantime, try reading through the archived messages from the group members... they are at the site where you signed up for the group. Just from reading through a few of them, you can get a feel for the depth of discussion and the experiences of the people here. Jeanne vincesboy2002 wrote: > > Hi i have a son at the age of 4 the might have rss but i need to talk > to someeone can someone contact me please. > > Angie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 Angie Welcome... I've only been a member of this group for less than a month, but even in that short time I know that whatever it is you need to talk about, this is the place to get started. The people here don't invent answers or make things up... they give you the best information they have and if they don't know the answer will send you to where you can go to get it, whether that is on the net or in the world. What is your son's name? I hope we'll hear more from you about your situation soon, and I know you'll find much of what you are looking for here. In the meantime, try reading through the archived messages from the group members... they are at the site where you signed up for the group. Just from reading through a few of them, you can get a feel for the depth of discussion and the experiences of the people here. Jeanne vincesboy2002 wrote: > > Hi i have a son at the age of 4 the might have rss but i need to talk > to someeone can someone contact me please. > > Angie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 Does he look alot smaller than his peers? What did your pediatrician say? I have a daughter that may have rss but we are not sure yet. Doc is doing the wait and see approach which is the reason I just switched doctors. RSS is apparently hard to diagnose because there is no definite test just alot of symptoms. Does he have ears that stick out or a triangular face or poor appetite? Assymetry ? There are alot of things but even if he does not fit all the traits he could still be RSS. What percentile is he in weight and height? Marla Eckert (unknown) Hi i have a son at the age of 4 the might have rss but i need to talk to someeone can someone contact me please. Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 Does he look alot smaller than his peers? What did your pediatrician say? I have a daughter that may have rss but we are not sure yet. Doc is doing the wait and see approach which is the reason I just switched doctors. RSS is apparently hard to diagnose because there is no definite test just alot of symptoms. Does he have ears that stick out or a triangular face or poor appetite? Assymetry ? There are alot of things but even if he does not fit all the traits he could still be RSS. What percentile is he in weight and height? Marla Eckert (unknown) Hi i have a son at the age of 4 the might have rss but i need to talk to someeone can someone contact me please. Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 Does he look alot smaller than his peers? What did your pediatrician say? I have a daughter that may have rss but we are not sure yet. Doc is doing the wait and see approach which is the reason I just switched doctors. RSS is apparently hard to diagnose because there is no definite test just alot of symptoms. Does he have ears that stick out or a triangular face or poor appetite? Assymetry ? There are alot of things but even if he does not fit all the traits he could still be RSS. What percentile is he in weight and height? Marla Eckert (unknown) Hi i have a son at the age of 4 the might have rss but i need to talk to someeone can someone contact me please. Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2002 Report Share Posted June 16, 2002 Hi, I am new to the RSS support group. I am a 25 year old young woman with RSS. I was diagnosed when I was 2 by Dr. of s Hopkins. I have read the recent emails and there seem to be a lot of concerns out there about your children with RSS. If you have any questions about how they feel, what later development will be like, etc., please feel free to ask me. For the record, RSS is not anything debilitating. Yes, in early childhood there are a lot of medical problems, hospital visits, etc. and it can seem overwhelming, but it does go away with age. I had another friend who lived in Washington (I live in Texas) who has RSS and she found it went away as well. Though small, I was able to participate in cheerleading, volleyball, gymnastic and a whole array of academic endeavors, including honor society and I also graduated in the top 10% of my high school class and am currently in college pursuing a degree in pediatric clinical psychology. So, all hope is not lost and all it takes is a little patience and understanding to get through the difficult years. However, I do feel strongly about having RSS children speak with a counselor or therapist as adolescence nears because not only is puberty a difficult time, but when you are not like the other kids, it makes it even more difficult. Hope this helps! Sincerely, Auchter --- kmerrith kkm@...> wrote: > Hi Angie, > > Welcome to our group. > > I am sure we can answer any question you have. > Please feel > free to ask just about anything. > > I hope we can help. > > Ken M > > > > > Hi i have a son at the age of 4 the might have rss > but i need to > talk > > to someeone can someone contact me please. > > > > Angie > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2002 Report Share Posted June 16, 2002 Dear Jodi, My son is 4 years old. He does not walk or speak yet. One doctor told us that he might have rss. I don't know anything about it. He weighs 26lbs. He is every small. He is a very happy little boy. is walking aong furniture, pulling to stand and crawling everywhere. But he does not walk on his own. He sometimes has seizures which is every scary. He eats every well but does not put on weight. Will he be alright? He gets OT, physical and speech. He will soom start school. I am every scared. Will he speech and walk? Is there real health issues. There is so much i need to know but i can not think right now. I will ask as a think of them. Please write back. Also is there anyone ever in the chat room i check everyday and no one is ever there. Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2002 Report Share Posted June 16, 2002 Dear Jodi, My son is 4 years old. He does not walk or speak yet. One doctor told us that he might have rss. I don't know anything about it. He weighs 26lbs. He is every small. He is a very happy little boy. is walking aong furniture, pulling to stand and crawling everywhere. But he does not walk on his own. He sometimes has seizures which is every scary. He eats every well but does not put on weight. Will he be alright? He gets OT, physical and speech. He will soom start school. I am every scared. Will he speech and walk? Is there real health issues. There is so much i need to know but i can not think right now. I will ask as a think of them. Please write back. Also is there anyone ever in the chat room i check everyday and no one is ever there. Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2002 Report Share Posted June 16, 2002 Dear Jodi, My son is 4 years old. He does not walk or speak yet. One doctor told us that he might have rss. I don't know anything about it. He weighs 26lbs. He is every small. He is a very happy little boy. is walking aong furniture, pulling to stand and crawling everywhere. But he does not walk on his own. He sometimes has seizures which is every scary. He eats every well but does not put on weight. Will he be alright? He gets OT, physical and speech. He will soom start school. I am every scared. Will he speech and walk? Is there real health issues. There is so much i need to know but i can not think right now. I will ask as a think of them. Please write back. Also is there anyone ever in the chat room i check everyday and no one is ever there. Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2002 Report Share Posted June 16, 2002 Yes vincent is small. He weighs 26lbs. He has triangler face but not that much any more. His ears do stick out and has a pointy chin. His clothes are every hard to find. The doctor said he might have rss has not said for sure yet. He is a very good eater but does not put on the weight. He sometimes has seizures. He walks along the furniture, pulls to stand and crawls but does not walk on his own yet. He also does not speack. Just sounds. He also does not follow direction. He does get better and better each day. But it is so stressful. Will he be alright? Will there be any big problems that i need to know about? Please writ me back. ANgie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2002 Report Share Posted June 16, 2002 Yes vincent is small. He weighs 26lbs. He has triangler face but not that much any more. His ears do stick out and has a pointy chin. His clothes are every hard to find. The doctor said he might have rss has not said for sure yet. He is a very good eater but does not put on the weight. He sometimes has seizures. He walks along the furniture, pulls to stand and crawls but does not walk on his own yet. He also does not speack. Just sounds. He also does not follow direction. He does get better and better each day. But it is so stressful. Will he be alright? Will there be any big problems that i need to know about? Please writ me back. ANgie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2002 Report Share Posted June 16, 2002 Yes vincent is small. He weighs 26lbs. He has triangler face but not that much any more. His ears do stick out and has a pointy chin. His clothes are every hard to find. The doctor said he might have rss has not said for sure yet. He is a very good eater but does not put on the weight. He sometimes has seizures. He walks along the furniture, pulls to stand and crawls but does not walk on his own yet. He also does not speack. Just sounds. He also does not follow direction. He does get better and better each day. But it is so stressful. Will he be alright? Will there be any big problems that i need to know about? Please writ me back. ANgie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2002 Report Share Posted June 17, 2002 Welcome and THANK YOU for offering your perspective! I so look forward to hearing your answers to everyone's questions. Congratulations on all of your many acheivements! What a positive thing you've given everyone to look forward to. Jeanne Auchter wrote: > > Hi, > > I am new to the RSS support group. I am a 25 year old > young woman with RSS. I was diagnosed when I was 2 by > Dr. of s Hopkins. I have read the recent > emails and there seem to be a lot of concerns out > there about your children with RSS. If you have any > questions about how they feel, what later development > will be like, etc., please feel free to ask me. For > the record, RSS is not anything debilitating. Yes, in > early childhood there are a lot of medical problems, > hospital visits, etc. and it can seem overwhelming, > but it does go away with age. I had another friend > who lived in Washington (I live in Texas) who has RSS > and she found it went away as well. Though small, I > was able to participate in cheerleading, volleyball, > gymnastic and a whole array of academic endeavors, > including honor society and I also graduated in the > top 10% of my high school class and am currently in > college pursuing a degree in pediatric clinical > psychology. So, all hope is not lost and all it takes > is a little patience and understanding to get through > the difficult years. However, I do feel strongly > about having RSS children speak with a counselor or > therapist as adolescence nears because not only is > puberty a difficult time, but when you are not like > the other kids, it makes it even more difficult. > > Hope this helps! > > Sincerely, > > Auchter > --- kmerrith kkm@...> wrote: > > Hi Angie, > > > > Welcome to our group. > > > > I am sure we can answer any question you have. > > Please feel > > free to ask just about anything. > > > > I hope we can help. > > > > Ken M > > > > > > > > > Hi i have a son at the age of 4 the might have rss > > but i need to > > talk > > > to someeone can someone contact me please. > > > > > > Angie > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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