Guest guest Posted June 4, 2001 Report Share Posted June 4, 2001 Thanks for the note. I was born in Danville, Va and go back to visit family some. Have a good day. Sue Re: hello > Hi Sue, > I just read your post and it sounds like you have a very large plate of > stuff to handle.I am sorry that your son has P.on top of everything else.I > live in roanoke Va and my son was in the air force about 6 years ago and he > was stationed in Sumter,SC but he lived in Colunbia.My husband and I used to > drive down a lot to visit and we have friends in Sumter too.I will keep you > both in my prayers. Your Friend > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 What surgery did you have? Who did it? What do you know about it? Thanks, Puyallup, WA (state) Website: www.vitalady.com To check out PayPal: https://secure.paypal.com/affil/pal=vitalady%40bigfoot.com HELLO > HI, > > I HAD THE OPERATION 3 YEARS AGO, I HAD LOST 100PDS, NOW I HAVE > GAINED BAck 30 can anyone help me. > > debbie > > > Homepage: http://groups.yahoo.com/group/Graduate-OSSG > > Unsubscribe: mailto:Graduate-OSSG-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2001 Report Share Posted September 16, 2001 Dear Lawanda. Sounds as if you have really great kids. Take it a day at a time and keep playing those video games with them. They will love you for it and you will feel better. Prayers for Mom also. She will be a big help to you when necessary. You sound like a nice caring individual. Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2001 Report Share Posted October 2, 2001 Janice, You need to start listening to your family. Yes they are busy, but they will find time to help, because they love you. My daughter works, has a husband and 8 y.o. child, is a Den mother, volunteers at the school, and does fundraising things at the school, Scouts and baseball team. Yet she finds 3-4 hours a day most days to go and sit with my wife in the full care Rehab center. Let them help you find help too. You mention insurance, is it Medicaid? Talk to your Public Health nurse about programs that are available in your area. Your Agency on Aging is another source of help. These people are found in the blue pages of your phone book. I know every area has some sort of Meals-on-Wheels program to get you at least one hot meal every day. Are you in a wheelchair? Are you doing your range of motion exercises to keep movement? Have you been following the doctor's instructions? Yes, many people with MSA are concerned about crowds. You must ignore people who stare at you, as they are ignorant. However, if a person offers to hold a door for you or help you in some small way, accept it with a " thank you " , as they are trying to help. It has not cost them anything but a few seconds of their time. There must be many doctors in Florida who know some about movement disorders. Parkinson's is a movement disorder and acts much like MSA only progresses slower. Call a local nursing home and ask for a list of doctors who have privileges at the nursing home, they often know at least a little about movement disorders and usually take Medicare/Medicaid. They will also know of other doctors (like neurologists) who take the same insurance. Sorry, but you must learn what you CAN do and what you can not do. Then you must accept the help you need with what you can not do. You obviously can use the computer, so you have hand movement. That is more than many patients here have. Take advantage of what you do have. Take care, Bill and Charlotte ========================== janice harrell wrote: > hello i just thought i would write,i haven,t wrote in > a while.since i had heart surgery.i have had a cold > and it has gotten me run down.i call the dr. because i > have run a temp.but the dr. don,t believe that if your > temp is 99 that it nothing.but anyway i just have been > feeling down laterly,i have giving up on finding a dr. > that know about msa here in fla.and when i do they > won,t see me because of my ins.i have been staying by > myself lately and my family is having a hard time with > it.i also have had trouble with my legs since i had > heart surgery and i try calling my dr. and they still > haven,t call me back.i feel like laterly it must be me > because everything i try to do i can,t seem to do it > right.my mind just will not funtion right,i start to > do something and i forget what i am doing.i was just > told last week that my eyes are worse that there is > nothing they can do,so i guess that means i will bbe > blind in the other eye later.i have try finding a > place i can go to like assitance living or > something.because all my family is doing now is saying > that so in so should take turns taking me here and > there and i am just so tired of them fussing about > taking me some where.i understand that they don,t have > time that is why i don,t want to tell them everything > about what is going on because it will just be mopre > problems.i am just tired of the stuff that is going on > i just had enough,that is why i am where i am and they > ddon,t like it because i have no way of cooking .but > tyhat is ok at least i don,t have to worry them.the > only place i have been in two months is to the dr. i > just stay right here and that way i am ok.i am sorry > how i sound it just ya are the only ones i talk to > about this msa things and so when i do crazy things it > just upset my family so it is hard talking to anyone > any morei am just so afraid of doing something > wrong.and when i go any where people just stare at me > and i can,t stand it.do any of ya have this problem or > is it just me.it just seems like that all of ya get > out and do things and ya have no problems getting > information how do ya do it.if ya find any thing out > let me know.i live in jax. fla.my no is 1- > ya can ccall me anytime i would love to hear from > people and i promise i will call back.talk at ya > later.good bye janice > --- maryann pedersen wrote: > > > > > > Pardon me; > > I have a cold and head is all stuffed up. The cough > > syrup with codeine is > > somewhat helpfull. So when I read your question > > tonight around 11pm, about > > neck pain and headaches. It suddenly hit me. The > > idiotic doctors are a pain > > in the neck which usually leaves you with a > > headache. > > Ann->MN/USA > > > > > > > > > > Reply-To: shydrager > > To: <shydrager > > > Subject: RE: neck pain > > Date: Mon, 1 Oct 2001 13:23:33 -0400 > > > > Greetings Neil! > > > > Neck pain and headaches can be caused by several > > things. But the most > > likely cause of this symptom is low blood pressure. > > > > > > Regards, > > =jbf= > > > > B. Fisher > > > > > > > _________________________________________________________________ > > Get your FREE download of MSN Explorer at > > http://explorer.msn.com/intl.asp > > > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2001 Report Share Posted October 2, 2001 Janice, You need to start listening to your family. Yes they are busy, but they will find time to help, because they love you. My daughter works, has a husband and 8 y.o. child, is a Den mother, volunteers at the school, and does fundraising things at the school, Scouts and baseball team. Yet she finds 3-4 hours a day most days to go and sit with my wife in the full care Rehab center. Let them help you find help too. You mention insurance, is it Medicaid? Talk to your Public Health nurse about programs that are available in your area. Your Agency on Aging is another source of help. These people are found in the blue pages of your phone book. I know every area has some sort of Meals-on-Wheels program to get you at least one hot meal every day. Are you in a wheelchair? Are you doing your range of motion exercises to keep movement? Have you been following the doctor's instructions? Yes, many people with MSA are concerned about crowds. You must ignore people who stare at you, as they are ignorant. However, if a person offers to hold a door for you or help you in some small way, accept it with a " thank you " , as they are trying to help. It has not cost them anything but a few seconds of their time. There must be many doctors in Florida who know some about movement disorders. Parkinson's is a movement disorder and acts much like MSA only progresses slower. Call a local nursing home and ask for a list of doctors who have privileges at the nursing home, they often know at least a little about movement disorders and usually take Medicare/Medicaid. They will also know of other doctors (like neurologists) who take the same insurance. Sorry, but you must learn what you CAN do and what you can not do. Then you must accept the help you need with what you can not do. You obviously can use the computer, so you have hand movement. That is more than many patients here have. Take advantage of what you do have. Take care, Bill and Charlotte ========================== janice harrell wrote: > hello i just thought i would write,i haven,t wrote in > a while.since i had heart surgery.i have had a cold > and it has gotten me run down.i call the dr. because i > have run a temp.but the dr. don,t believe that if your > temp is 99 that it nothing.but anyway i just have been > feeling down laterly,i have giving up on finding a dr. > that know about msa here in fla.and when i do they > won,t see me because of my ins.i have been staying by > myself lately and my family is having a hard time with > it.i also have had trouble with my legs since i had > heart surgery and i try calling my dr. and they still > haven,t call me back.i feel like laterly it must be me > because everything i try to do i can,t seem to do it > right.my mind just will not funtion right,i start to > do something and i forget what i am doing.i was just > told last week that my eyes are worse that there is > nothing they can do,so i guess that means i will bbe > blind in the other eye later.i have try finding a > place i can go to like assitance living or > something.because all my family is doing now is saying > that so in so should take turns taking me here and > there and i am just so tired of them fussing about > taking me some where.i understand that they don,t have > time that is why i don,t want to tell them everything > about what is going on because it will just be mopre > problems.i am just tired of the stuff that is going on > i just had enough,that is why i am where i am and they > ddon,t like it because i have no way of cooking .but > tyhat is ok at least i don,t have to worry them.the > only place i have been in two months is to the dr. i > just stay right here and that way i am ok.i am sorry > how i sound it just ya are the only ones i talk to > about this msa things and so when i do crazy things it > just upset my family so it is hard talking to anyone > any morei am just so afraid of doing something > wrong.and when i go any where people just stare at me > and i can,t stand it.do any of ya have this problem or > is it just me.it just seems like that all of ya get > out and do things and ya have no problems getting > information how do ya do it.if ya find any thing out > let me know.i live in jax. fla.my no is 1- > ya can ccall me anytime i would love to hear from > people and i promise i will call back.talk at ya > later.good bye janice > --- maryann pedersen wrote: > > > > > > Pardon me; > > I have a cold and head is all stuffed up. The cough > > syrup with codeine is > > somewhat helpfull. So when I read your question > > tonight around 11pm, about > > neck pain and headaches. It suddenly hit me. The > > idiotic doctors are a pain > > in the neck which usually leaves you with a > > headache. > > Ann->MN/USA > > > > > > > > > > Reply-To: shydrager > > To: <shydrager > > > Subject: RE: neck pain > > Date: Mon, 1 Oct 2001 13:23:33 -0400 > > > > Greetings Neil! > > > > Neck pain and headaches can be caused by several > > things. But the most > > likely cause of this symptom is low blood pressure. > > > > > > Regards, > > =jbf= > > > > B. Fisher > > > > > > > _________________________________________________________________ > > Get your FREE download of MSN Explorer at > > http://explorer.msn.com/intl.asp > > > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2001 Report Share Posted October 2, 2001 Greetings Janice! I agree with what Bill says. I would also add that you should probably talk with your GP about depression. Also try to find a support group in your area. Many churches provide support groups for folks that are aging. Some even have support groups for people with chronic illness. It helps to talk about your feelings. A note about Bill's comment: > Yes, many people with MSA are concerned about crowds. > You must ignore people who stare at you, as they are > ignorant. We all stare at things that are different. Walking as if drunk. Talking as if drunk. Or confined to a wheelchair. All of these make us different. It is a normal reaction that some people do not learn to control. > However, if a person offers to hold a door for you or > help you in some small way, accept it with a " thank you " , > as they are trying to help. It has not cost them > anything but a few seconds of their time. Actually there are too pieces here. First the " thank you " provides positive reinforcement. Sometimes that moves people beyond just holding doors and understanding they need to move into service of others. Second, the " thank you " also helps you! You start to see that others around you are helpful and caring. The world doesn't seem all that depressing when others offer to help. It can make a huge difference in your attitude. Just the act of giving thanks returns a blessing. You never know how much it will help. But a simple " thank you " is not all that simple. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2001 Report Share Posted October 2, 2001 Greetings Janice! I agree with what Bill says. I would also add that you should probably talk with your GP about depression. Also try to find a support group in your area. Many churches provide support groups for folks that are aging. Some even have support groups for people with chronic illness. It helps to talk about your feelings. A note about Bill's comment: > Yes, many people with MSA are concerned about crowds. > You must ignore people who stare at you, as they are > ignorant. We all stare at things that are different. Walking as if drunk. Talking as if drunk. Or confined to a wheelchair. All of these make us different. It is a normal reaction that some people do not learn to control. > However, if a person offers to hold a door for you or > help you in some small way, accept it with a " thank you " , > as they are trying to help. It has not cost them > anything but a few seconds of their time. Actually there are too pieces here. First the " thank you " provides positive reinforcement. Sometimes that moves people beyond just holding doors and understanding they need to move into service of others. Second, the " thank you " also helps you! You start to see that others around you are helpful and caring. The world doesn't seem all that depressing when others offer to help. It can make a huge difference in your attitude. Just the act of giving thanks returns a blessing. You never know how much it will help. But a simple " thank you " is not all that simple. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2001 Report Share Posted October 2, 2001 Hi , Welcome to our group. I hope we can answer your questions. I read the info about Jack that you posted. I was interested to see he has night sweats. Have youy mentioned this to your doctor? I ask becasue many RSS children seem to have this and it is often an indicator of night time hypoglycemia. Something that can be easily treated with a diet change. I am also a little concerned about the dehydration and vomiting. Again, have you made this info available to your doctor and what does she/he say? Since you are new I thought I'd point our a few features of this list. It has a web site. At the web site you can view pictures of other RSS children and add some of your own. Please create a folder first and place the pictures there. The web site has a place to edit your settings so if you go on vacation you can set it so you don't get any messages but can view them from the web. There is a small database with some measurements of some children. I have to clean it up a little. There is a recipe book with a few high calorie recipes. Also, there is a bookmark section with links to many medical databases such as Medline and NIH. Finally, we have a chat function so people can have chat sessions. It is not used often. I hope we can provide guidance and advice but remember, always check with a doctor first. Although we are al well meaning and try to be accurate, we can be wrong, so it is best to check first. Welcome to our group. Ken M > Hello Everyone, > > I am so happy that I found this group and hope to learn from all your > experiences. I have two precious children; my son Jack (age 4) was > diagnosed last year with RSS and daughter (age 7) appears not > affected, although she is a smaller child. > > Jack has chronic sinus problems, vomiting, periodic night sweats, > allergies, dehydration, and PDD type tendencies. We currently have > him on periactin. > > Thanks for being here for me. > > Mc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2001 Report Share Posted October 2, 2001 HI LINDA_ Welcome to the group!! I am sure we will be able to learn a lot from you and hopefully you will learn a lot from us too. Your son, Jack, sounds similar to my son, Dominic (2 years old). Dominic also has been diagnosed with RSS, has chronic sinus problems, periodic nightsweats, allergies, and easily dehydrates when sick. The night sweats have concerned me b.c it could mean he has low blood sugar but when I check it, there is no indication of it. I also make sure he eats or drinks pediasure before bed to help ensure low blood sugard doesn't occur. Is Jack on growth hormone treatments and how much does he weigh? Just curious. Again, Welcome! F. from WV --- lake00002001@... wrote: > Hello Everyone, > > I am so happy that I found this group and hope to > learn from all your > experiences. I have two precious children; my son > Jack (age 4) was > diagnosed last year with RSS and daughter (age > 7) appears not > affected, although she is a smaller child. > > Jack has chronic sinus problems, vomiting, periodic > night sweats, > allergies, dehydration, and PDD type tendencies. We > currently have > him on periactin. > > Thanks for being here for me. > > Mc > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Marla, I am also new to this listserve myself. My son, Christian, is 18 mos. old and just got diagnosed recently. One thing I've learned about RSS is that " most " kids have the same features. But many have different problems that may or may not be related to RSS. As Ken told me when I first joined that RSS may be a combination of 2 or 3 different syndromes. To have this diagnosis is great and frustrating at the same time. It's great to have a diagnosis period. But it's frustrating b/c I don't think anyone is 100 % sure their child has RSS. I know it's not very reassuring, but those are just my small words of wisdom regarding the road I've been down since getting " diagnosed. " (mom to jesse, 4, and Christian (RSS) 18 mos.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Marla, I am also new to this listserve myself. My son, Christian, is 18 mos. old and just got diagnosed recently. One thing I've learned about RSS is that " most " kids have the same features. But many have different problems that may or may not be related to RSS. As Ken told me when I first joined that RSS may be a combination of 2 or 3 different syndromes. To have this diagnosis is great and frustrating at the same time. It's great to have a diagnosis period. But it's frustrating b/c I don't think anyone is 100 % sure their child has RSS. I know it's not very reassuring, but those are just my small words of wisdom regarding the road I've been down since getting " diagnosed. " (mom to jesse, 4, and Christian (RSS) 18 mos.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Marla, I am also new to this listserve myself. My son, Christian, is 18 mos. old and just got diagnosed recently. One thing I've learned about RSS is that " most " kids have the same features. But many have different problems that may or may not be related to RSS. As Ken told me when I first joined that RSS may be a combination of 2 or 3 different syndromes. To have this diagnosis is great and frustrating at the same time. It's great to have a diagnosis period. But it's frustrating b/c I don't think anyone is 100 % sure their child has RSS. I know it's not very reassuring, but those are just my small words of wisdom regarding the road I've been down since getting " diagnosed. " (mom to jesse, 4, and Christian (RSS) 18 mos.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Marla, There is a lot of variation of symptoms of RSS - it may even be a group of related syndromes clumped together - nothing that has a genetic test (well, unless your child has maternal disomy, which is a test which needs to be given to mom, dad, and child, and is a small percentage of the cases), just certain groups of traits clumped together. Have you looked over the description on the MAGIC bulletin board? It is at http://www.magicfoundation.org/divisions/rss.htm There have been challenges for adults, but many of the childhood problems decrease with time - including the asymmetries. Treatment with food supplements and GH can help a lot. Perhaps you might want to look into getting some info from the past MAGIC conferences or look over some of the articles in their library - do you belong to MAGIC? I've also found info at the local medical school's library and over the web... Inga At 05:52 AM 4/12/2002 +0000, you wrote: > > I'm new and still very confused about RSS... Looking at all these > pictures I just don't see too much of a resemblence among all of the > children. And they all have so many differences in medical issues. > If my daughter is RSS, does that mean she will have medical problems > in the future for sure? Thanks, Marla > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Marla, There is a lot of variation of symptoms of RSS - it may even be a group of related syndromes clumped together - nothing that has a genetic test (well, unless your child has maternal disomy, which is a test which needs to be given to mom, dad, and child, and is a small percentage of the cases), just certain groups of traits clumped together. Have you looked over the description on the MAGIC bulletin board? It is at http://www.magicfoundation.org/divisions/rss.htm There have been challenges for adults, but many of the childhood problems decrease with time - including the asymmetries. Treatment with food supplements and GH can help a lot. Perhaps you might want to look into getting some info from the past MAGIC conferences or look over some of the articles in their library - do you belong to MAGIC? I've also found info at the local medical school's library and over the web... Inga At 05:52 AM 4/12/2002 +0000, you wrote: > > I'm new and still very confused about RSS... Looking at all these > pictures I just don't see too much of a resemblence among all of the > children. And they all have so many differences in medical issues. > If my daughter is RSS, does that mean she will have medical problems > in the future for sure? Thanks, Marla > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Marla, There is a lot of variation of symptoms of RSS - it may even be a group of related syndromes clumped together - nothing that has a genetic test (well, unless your child has maternal disomy, which is a test which needs to be given to mom, dad, and child, and is a small percentage of the cases), just certain groups of traits clumped together. Have you looked over the description on the MAGIC bulletin board? It is at http://www.magicfoundation.org/divisions/rss.htm There have been challenges for adults, but many of the childhood problems decrease with time - including the asymmetries. Treatment with food supplements and GH can help a lot. Perhaps you might want to look into getting some info from the past MAGIC conferences or look over some of the articles in their library - do you belong to MAGIC? I've also found info at the local medical school's library and over the web... Inga At 05:52 AM 4/12/2002 +0000, you wrote: > > I'm new and still very confused about RSS... Looking at all these > pictures I just don't see too much of a resemblence among all of the > children. And they all have so many differences in medical issues. > If my daughter is RSS, does that mean she will have medical problems > in the future for sure? Thanks, Marla > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Hi Marla, My son has RSS and that appears to be his only medical problem. He had a check up the other day and the doctor remarked about how healthy he was. So, RSS doesn't mean there are other related medical problems on the future. I hope this helps. Ken M > I'm new and still very confused about RSS... Looking at all these > pictures I just don't see too much of a resemblence among all of the > children. And they all have so many differences in medical issues. > If my daughter is RSS, does that mean she will have medical problems > in the future for sure? Thanks, Marla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2002 Report Share Posted April 14, 2002 Hi , thanks for your input...How much does Christian weigh and how tall is he? How much does he eat? Does he have any medical problems? What made the doc diagnose him with RSS? Sorry, that's alot to answer..I am just eager to compare notes especially with Christian being only 1 month older than Hannah. Thanks, Marla Eckert Re: Hello Marla, I am also new to this listserve myself. My son, Christian, is 18 mos. old and just got diagnosed recently. One thing I've learned about RSS is that " most " kids have the same features. But many have different problems that may or may not be related to RSS. As Ken told me when I first joined that RSS may be a combination of 2 or 3 different syndromes. To have this diagnosis is great and frustrating at the same time. It's great to have a diagnosis period. But it's frustrating b/c I don't think anyone is 100 % sure their child has RSS. I know it's not very reassuring, but those are just my small words of wisdom regarding the road I've been down since getting " diagnosed. " (mom to jesse, 4, and Christian (RSS) 18 mos.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2002 Report Share Posted April 14, 2002 Hi , thanks for your input...How much does Christian weigh and how tall is he? How much does he eat? Does he have any medical problems? What made the doc diagnose him with RSS? Sorry, that's alot to answer..I am just eager to compare notes especially with Christian being only 1 month older than Hannah. Thanks, Marla Eckert Re: Hello Marla, I am also new to this listserve myself. My son, Christian, is 18 mos. old and just got diagnosed recently. One thing I've learned about RSS is that " most " kids have the same features. But many have different problems that may or may not be related to RSS. As Ken told me when I first joined that RSS may be a combination of 2 or 3 different syndromes. To have this diagnosis is great and frustrating at the same time. It's great to have a diagnosis period. But it's frustrating b/c I don't think anyone is 100 % sure their child has RSS. I know it's not very reassuring, but those are just my small words of wisdom regarding the road I've been down since getting " diagnosed. " (mom to jesse, 4, and Christian (RSS) 18 mos.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 Marla, Christian currently weighs 13lbs. 13 oz. and is 27 in tall. He was born 7 weeks earlier and was 2lbs 1 oz. and 13 in tall. He seems huge to me, but I know that he isn't. He is a very picky eater. He has never been good taking his bottle. It would be a wrestling match to get him to take much of anything. He does a little better with the jarred food but only once in a while. I try to offer him lots of different snacks throughout the day (crackers, cookies, granola bars, etc.) Although I usually find most of them on the floor. With his bottle now, I have an empty bottle with a nipple on it that lays around. He brings it to me when he wants a bottle. I still feed him every 2-3 hours, but sometimes he just won't eat. So I feel better with this system because he definitely is taking a little bit more. Medically, we are unsure. He had reflux for the first year. That kinda took care of itself. We are in the process of examining him for hydrocephalus. He had a CT scan done last May that looked normal, but his head has grown further up the charts and away from his body percentile. I don't know what to think about the hydrocephalus. I think that it is more the drs. not really knowing or understanding RSS and just wanting to make sure. I'm alright with that. But, so far, medically that is all we are going through. He has no signs, as of yet, of any assymetry. I hope this answers your questions. Don't feel bad about asking, I was just in your shoes, 3 mos. ago. Good luck and keep asking! (mom to , 4, and Christian (RSS), 18 mos.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 Thanks for your input and for being so thourogh. I really appreciate it! Hannah seems huge to me also but I know she's not... She just got the results of her hand xray and her bone age is delayed big time! They said she has the bone age of a 7-11month old. Hannah is 17 months old. I don't know what to think of that news, but they say it means she has room to grow. I guess that is another sure point of RSS? Sounds like Christian eats as well as Hannah. I'm glad he is doing well and I'm happy there is no assymetry. Could assymetry all of a sudden happen or does it happen from the start? Well thanks for responding and your input helps alot. Marla Marla Eckert Re: Hello Marla, Christian currently weighs 13lbs. 13 oz. and is 27 in tall. He was born 7 weeks earlier and was 2lbs 1 oz. and 13 in tall. He seems huge to me, but I know that he isn't. He is a very picky eater. He has never been good taking his bottle. It would be a wrestling match to get him to take much of anything. He does a little better with the jarred food but only once in a while. I try to offer him lots of different snacks throughout the day (crackers, cookies, granola bars, etc.) Although I usually find most of them on the floor. With his bottle now, I have an empty bottle with a nipple on it that lays around. He brings it to me when he wants a bottle. I still feed him every 2-3 hours, but sometimes he just won't eat. So I feel better with this system because he definitely is taking a little bit more. Medically, we are unsure. He had reflux for the first year. That kinda took care of itself. We are in the process of examining him for hydrocephalus. He had a CT scan done last May that looked normal, but his head has grown further up the charts and away from his body percentile. I don't know what to think about the hydrocephalus. I think that it is more the drs. not really knowing or understanding RSS and just wanting to make sure. I'm alright with that. But, so far, medically that is all we are going through. He has no signs, as of yet, of any assymetry. I hope this answers your questions. Don't feel bad about asking, I was just in your shoes, 3 mos. ago. Good luck and keep asking! (mom to , 4, and Christian (RSS), 18 mos.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 I'm sorry you're having such problems. I have heard of gastric bypass patients that go to Overeaters Anonymous, and they might help you deal with your eating frustrations. They do not give a specific diet or eating plan, they just help you deal with your " addiction " to overeating. The program is similar to Alcoholic Anonymous as far as dealing with addiction. Another suggestion is that you might benefit from help from psychiatrist or analyst. That should help with your self-esteem issues. I've used Kaiser Psychiatry Department in the past, and they were very helpful. I hope one of my suggestions helps you. --Sandi H. (5 ft 1 inch tall) Dr. Leo – San Diego (Thru Kaiser) 315 at orientation (May '03) 252 at surgery (6/03/04) Last weighed at 184.5 (01/29/2005) Hopefully someday below 140 (yeah, I hope before Oct. 2nd when my daughter gets married!) sandiantoytrain @ yahoo . com > > Hello I have been subscribing to this group for some months but never > had the courage to step up so here goes. I had gastric bypass > 01/05/04 Ive lost 68 pounds I have 115 to go .I had Lap in Sandiego > thru Pacific Bariatrics referred by Kaiser .Surgery was was not > complicated pretty much text book but right know Im in living hell > with the physical changes Im having mental changes issues I thought I > delt with I have not or have to finish dealing with them ,Im in the > process of seperating from my domestic partner of five years ,Im > coming out the closet in reverse and I have hit all new low in self > esteem category ( feel like a mud duck)quack I have started eating > all day and night I cant do more than about 8 oz but I nibble all day > I started a group called Food Addicts Anonymous it has a strict > dietary program but they where not willing to change the menu for my > gastric needs and made me feel guilty when there was days I was not > hungry and did not want to eat so now I feel like a fallure on booth > fronts .Is ther any body else in the same boat ,similar boat or dont > even have the slightest clue what the hell Im talking about but want > to give an opinion please do . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 I'm sorry you're having such problems. I have heard of gastric bypass patients that go to Overeaters Anonymous, and they might help you deal with your eating frustrations. They do not give a specific diet or eating plan, they just help you deal with your " addiction " to overeating. The program is similar to Alcoholic Anonymous as far as dealing with addiction. Another suggestion is that you might benefit from help from psychiatrist or analyst. That should help with your self-esteem issues. I've used Kaiser Psychiatry Department in the past, and they were very helpful. I hope one of my suggestions helps you. --Sandi H. (5 ft 1 inch tall) Dr. Leo – San Diego (Thru Kaiser) 315 at orientation (May '03) 252 at surgery (6/03/04) Last weighed at 184.5 (01/29/2005) Hopefully someday below 140 (yeah, I hope before Oct. 2nd when my daughter gets married!) sandiantoytrain @ yahoo . com > > Hello I have been subscribing to this group for some months but never > had the courage to step up so here goes. I had gastric bypass > 01/05/04 Ive lost 68 pounds I have 115 to go .I had Lap in Sandiego > thru Pacific Bariatrics referred by Kaiser .Surgery was was not > complicated pretty much text book but right know Im in living hell > with the physical changes Im having mental changes issues I thought I > delt with I have not or have to finish dealing with them ,Im in the > process of seperating from my domestic partner of five years ,Im > coming out the closet in reverse and I have hit all new low in self > esteem category ( feel like a mud duck)quack I have started eating > all day and night I cant do more than about 8 oz but I nibble all day > I started a group called Food Addicts Anonymous it has a strict > dietary program but they where not willing to change the menu for my > gastric needs and made me feel guilty when there was days I was not > hungry and did not want to eat so now I feel like a fallure on booth > fronts .Is ther any body else in the same boat ,similar boat or dont > even have the slightest clue what the hell Im talking about but want > to give an opinion please do . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Hello, In what city are you located? Is there a Kaiser with a support group near you that you can attend and get some love from people who have been through gbs? I am pre-op, but I can already tell its a tough road to walk down. Much better to have some company... PS - you probably have heard this before but I'll aks anyway...are you exercising much? > > Hello I have been subscribing to this group for some months but never > had the courage to step up so here goes. I had gastric bypass > 01/05/04 Ive lost 68 pounds I have 115 to go .I had Lap in Sandiego > thru Pacific Bariatrics referred by Kaiser .Surgery was was not > complicated pretty much text book but right know Im in living hell > with the physical changes Im having mental changes issues I thought I > delt with I have not or have to finish dealing with them ,Im in the > process of seperating from my domestic partner of five years ,Im > coming out the closet in reverse and I have hit all new low in self > esteem category ( feel like a mud duck)quack I have started eating > all day and night I cant do more than about 8 oz but I nibble all day > I started a group called Food Addicts Anonymous it has a strict > dietary program but they where not willing to change the menu for my > gastric needs and made me feel guilty when there was days I was not > hungry and did not want to eat so now I feel like a fallure on booth > fronts .Is ther any body else in the same boat ,similar boat or dont > even have the slightest clue what the hell Im talking about but want > to give an opinion please do . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 I feel your pain... I'm wondering if you can in anyway change one thing you have control of at a time. I know that when I have too many irons in the fire I get overwhelmed and usually get burned. Can you find something you've listed and change it to your benifit. Maybe its as simple as posting once a week to have others give responses that you can use as a starting point or know that you've looked at your situation from many angles. Or maybe its that you decide that you won't snack in the am between the hours of 9am - noon. Start having some small sucessses, you are worth it...you can do it. I don't know you, but we are sisters in WLS. I want you to have the full life you dreamed of when you started this journey. I congradulate your for having the courage to share and to have GBS to improve your health. Babysteps.......you can do it.....I know you can.....I'm right there with you......ready? One foot in front of the other...here we go. Tawny > > Hello I have been subscribing to this group for some months but never > had the courage to step up so here goes. I had gastric bypass > 01/05/04 Ive lost 68 pounds I have 115 to go .I had Lap in Sandiego > thru Pacific Bariatrics referred by Kaiser .Surgery was was not > complicated pretty much text book but right know Im in living hell > with the physical changes Im having mental changes issues I thought I > delt with I have not or have to finish dealing with them ,Im in the > process of seperating from my domestic partner of five years ,Im > coming out the closet in reverse and I have hit all new low in self > esteem category ( feel like a mud duck)quack I have started eating > all day and night I cant do more than about 8 oz but I nibble all day > I started a group called Food Addicts Anonymous it has a strict > dietary program but they where not willing to change the menu for my > gastric needs and made me feel guilty when there was days I was not > hungry and did not want to eat so now I feel like a fallure on booth > fronts .Is ther any body else in the same boat ,similar boat or dont > even have the slightest clue what the hell Im talking about but want > to give an opinion please do . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Hi Sorry to hear you are going through so much. You need to seek out the services of a professional to help you. And definitely a new support group!! You need to get a grip on the emotional turmoil you are in so that you do not resume to your old patterns. Put yourself first!! Love yourself enough to get through this without eating. I know its not easy...it will probably be the hardest thing for you to do...but seek out all the help you can. Rid yourself of any negative and sabatoging relationships!! Good Luck and my thoughts are with you Huggles > > Hello I have been subscribing to this group for some months but never > had the courage to step up so here goes. I had gastric bypass > 01/05/04 Ive lost 68 pounds I have 115 to go .I had Lap in Sandiego > thru Pacific Bariatrics referred by Kaiser .Surgery was was not > complicated pretty much text book but right know Im in living hell > with the physical changes Im having mental changes issues I thought I > delt with I have not or have to finish dealing with them ,Im in the > process of seperating from my domestic partner of five years ,Im > coming out the closet in reverse and I have hit all new low in self > esteem category ( feel like a mud duck)quack I have started eating > all day and night I cant do more than about 8 oz but I nibble all day > I started a group called Food Addicts Anonymous it has a strict > dietary program but they where not willing to change the menu for my > gastric needs and made me feel guilty when there was days I was not > hungry and did not want to eat so now I feel like a fallure on booth > fronts .Is ther any body else in the same boat ,similar boat or dont > even have the slightest clue what the hell Im talking about but want > to give an opinion please do . Quote Link to comment Share on other sites More sharing options...
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