Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 Thanks. I was going to omit casein for the week. Do you know if butter can be used at all? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 Welcome Lana, Dairy & casein generally leave the body in about 3-4 days, however your child may have withdrawal symptoms a few days beyond that. Withdrawal symptoms and length will vary from child to child. My son had almost no reaction to dairy withdrawal. Gluten made a much biger difference. I'd give it a week doing dairy/casein-free only and see how things go, then move on to gluten elimination. Best of luck to you, Dolores Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 Sorry, butter is a huge NO! Try Fleischmann's light or unsalted margarine. The regular has whey (casein) in it. Check out the food list information at http://www.gfcfdiet.com. We also have a recipes forum at /group/GFCFrecipes Just post if you need anymore help! Dolores J (TX) " Thanks. I was going to omit casein for the week. Do you know if butter can be used at all? " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 The first week was a bit rough. My son was very irritable, seemed to be mildly ill and just generally " off " for the first few days. Up to that point, a cup or bottle of milk was the cure-all for any problem, frustration or need. Luckily he had been given soy formula as an infant and didn't mind soy milk, although he has never taken such huge quantities since we switched. I am now alternating between Soy and Rice milks to avoid overdoing it with soy products. By the end of that first week we started to notice incredible changes in personality, communication, energy and interest levels. That has kept us motivated! Good luck! Cherri Mom to (22 mo.s: CF for 1.5 months and nearly GF) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 In a message dated 10/3/2000 12:22:33 PM Eastern Daylight Time, pdabj@... writes: << Dairy & casein generally leave the body in about 3-4 days, >> I beg to differ on this one. I don't believe it leaves that fast. anyone care to comment. kelly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2000 Report Share Posted October 5, 2000 My son started having withdrawal effects after the second day and it got worse for about a week before he changed. Sometimes you see more of a change with gluten than casein and if that is the case it might take up to 8 months for that to be out of their system. They say to try the diet for 3 months and if it's going to work you'll usually see some kind of progress within that time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2001 Report Share Posted February 2, 2001 Welcome ! Great weight losses! Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2001 Report Share Posted February 2, 2001 Welcome and congratulation on your success! EJ Reece Open very distal RNY pre op 270 BMI 41 24/26 5'8 " post op 7+ years 135 BMI 20 6/8 New Member Hello! My name is . Ive had the Roux-en-y Gastric Exclusion operation. I had it the beginning of 2000. My pre surgery weight was 308. Im now down to 158. So ive lost 150 pounds. Im 5'4' and now i feel alot better but have a little way left to go. Im so glad to have found a place where others have had the same thing done. Most people do not understand how I feel, emotionaly or now phyically. I hope to become of some encouragment to others and hope to get to know you all better. __________________________________________________ Get personalized email addresses from Yahoo! Mail - only $35 a year! http://personal.mail.yahoo.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2001 Report Share Posted March 15, 2001 How much protein supplement do you take? Thanks, www.vitalady.com https://secure.paypal.com/affil/pal=vitalady%40bigfoot.com new member > hello my name is jazzmine.... i had surgery about a year ago a few days > early. 3-20-00. i have been lurking here for a while and some discouraged > and sometimes excited by what i hear. i had the fobi procedure and am down > from 251 to 139. sometime 141 it depends on the time of day. i am doing all > right there are times i wish i wouldn't have had the surgery because i feel > more unhealthy and like a weakling than i did when i was fat. i notice i get > tired quickly and must be in bed by 10pm or i am whipped the next morning. i > have a 18 month old daughter and had the surgery when she was about 6 months > or so. i am to the most satisfied although i feel like i am waiting for > something to go wrong. waiting for some bad news. i am thrilled to be so > skinny but a little worried about my health. > > i live in ventura, and don't attend my support groups. i am a little weepy > when it comes to the vitamins they make me ill. i notice i bruise really > easy and when i am moving or doing something i always get bruises from the > tops of my legs and body to the bottom. my husband likes the weight loss but > is worried about me also says when he holds me i am very bony. > > please any words of wisdom would help > > thanks > > jazzmine > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2001 Report Share Posted April 17, 2001 Hi My name is Maeve and I'm from Ireland the other side of the world! My son was born by cs at 30 weeks because he wasn't growing. He weighed 1lb 14 oz and we were terrified he was going to die. He spent 10 weeks in neo-natal care and was tube fed for the first few weeks of life. is my first child and I knew nothing about centile lines or catch-up growth and because my placenta was malfunctioning we believed that was why was so small. 's paeditrician suspected rss early on but it was ruled out by the genetisist until she re-examined him at about 6 months and finally confirmed the diagnosis at 8 months. It has certainly been the hardest year of my life and it took me a long time to come to terms with my child being 'labelled' with a syndrome. When I look back over the last 16 months I can honestly say that and his problems have changed me as a person for the better. It has been a very humbling experience to see how copes with his illnesses,frequent vomiting, feeding problems (he has big problems with textures and lumps) hospital visits and needles etc etc. He is the most amazing little person and has so much fight and character. is now about 15 months (correctd age 13 months) and he has many of the physical features you mentioned. He is also on high calorie formula (Infatrini - 101 calories per 100mls) and will eat a small amount of the 4 month pureed baby jars. We have been referred to Dr Stanhope in London on the 14th May and we are very much looking forward to talking to an 'expert' on rss so we will let you know how we get on. He is looking into growth hormone therapy as a possibility for although from what I have read this won't be starting before 2. was 70cms and 15lb 14oz on his last hospital visit when he was just over a year (corrected age - I look on 's age from when he should have been born which is 18th March). Sorry for rambling on so much - hope this helps! Welcome to the group - the people here have been a great support for me and I know you'll find the same. Feel free to e-mail me privately if you want. Maeve Mc Evoy mother of Maeve.McEvoy@... New Member > hi > My name is . > My gorgeous little boy is currently 16 months old. He was born at 35 > weeks weighing 1515grams - 3lb 5oz. He has not done any " catching > up " in terms of weight and length since birth. I was interested > recently to learn about RSS - having been told by one doctor that my > son was " just little " I decided to do some investigating of my own! > I found the MAGIC web site and of course tne RSS page - Finlay has > ALL the charecteristic traits of RSS - mnay traits we had observed > over the last few months but not realised they were at all related - > eg small high ptiched voice, curved fifth finger, small crowded > teeth, lateness of closure of fontanel...incredible > Anyway we have not receive a formal diagnosis but were already aware > that being small was always going to be an issue for him. My > understanding is that RSS is not diagnosed or " treated " in terms of > GH therapy until after the age of 2 - but it has been great to read > all of the posts on this site and just find out a bit more about the > road ahead! > Finlay is currently 16 months old and weighs 7 kg (14 lbs???) we have > been using periactin anyway for the last few months and also a liquid > fod supplement - pediasure . > We live in New Zealand and would be interested in hearing of anyone > else with a similar experience > Many thanks > Forsyth > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 Dear Ruby, My dad has MSA and is also in a two story house with bath and bedrooms upstairs. We installed bannisters on both sides of the stairs and he is still able to make it down himself by going down backwards and holding on to each side. It takes him a long time to get down, but it is exercise too. We have been considering a chair lift also. I will be very interested in the responses from others who have tried them. What are the pros and cons, cost, does insurance cover, etc.? I am also curious about home care and respite care. My mom would like to take a few days off to visit her brother. Since she is the primary caregiver she is reluctant to go. Can any of you tell us about respite, nursing home, home health care options and give us your opinions on what works, what to avoid. Is there a difference between respite and nursing home? Regarding your husband's reluctance to be with others with this condition that is understandable. My dad attends a Parkinsons day care when he is able to get up and going (The Struthers Institute in Minneapolis). He was reluctant at first, but really enjoys going there now. He is a very creative fellow and is always impressing the staff with his ideas and projects. They had a special day to celebrate the ice cream cone (a sacred object in my family!) and had the group make art projects out of cones. My dad made a " stained glass " lamp by painting the little squares on a waffle cone! My mom said it was the lamp that she had always wanted! Anyway, there is always a bright light out there somewhere! (no pun intended) Best wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 Ruby, Welcome, sorry you had to find us. We do have a Silver Glide stairlift (since 1998) and it works fine. Daycare is an option at this stage as long as he can sit in a wheelchair (W/C) comfortablely. You do want to make sure the W/C is a good one and fits him well. Some of us hire someone to come in part time and others have had to hire full time help. I retired when it became too much, but worked part time for another 4 years. Your Health Department may be of some help in finding a person to come in to bathe him, but not full time care. Talk to your local Agency on Aging, they often know of resources. How much care does he need? If you only want someone to be with him and provide minor help, maybe you can find someone at a Senior Home who will come in and sit with him. Your church may be able to help. Below, I've added an email I send out to new members with general info. Hope this helps with your questions. Feel free to contact us on or off the list any time. Tell us what general area you live in and we can tell you if we know of anyone in your general area. Take care, Bill and Charlotte Werre in Herndon, VA USA (20 miles west of Washington, DC) Welcome to the Shy-Drager - MSA support list. In 1995 doctors decided that MSA or Multi-System Atrophy was a better name for Shy-Drager Syndrome, sporadic OPCA and SND. This email is to give you some introductory information about the disorder only. It should also clear up some misleading info on the internet. First of all, don't believe everything you read about MSA or Shy-Drager Syndrome. Our experience is that you could have 27 years yet. Many people have lived more than 20 years with it. There are new research results published every day. So much brain research has advanced since 1993, that there is now some hope a cure could be found in as little as five years. Concentrate on what you can do. Exercise does help keep movement. You need to start a daily exercise program now (everyday). In particular, you need to work on range of motion exercises (warm-ups or arthritis type). You must also work on speech exercises. Your volume will probably go down slowly and you will not know it, so get Rose's speech exercises and start them now. They are on this site http://groups.yahoo.com/group/shydrager/files/Various+MSA+Information+Sheets/Spe\ ech+%26 +Swallowing/ Or if you can not reach that site try: http://freepages.health.rootsweb.com/~charmayn/ Another important item with MSA is the fact that your swallowing muscles tend to lose their strength and if you do not keep them exercised, you will lose some or all of your ability to swallow. Liquids in particular are difficult for many MSA patients. This can lead to dehydration and urinary tract infections (UTI). Infection of any type (UTI, pneumonia, blood, or even yeast) is dangerous to MSA patients. MSA patients often run a lower than normal " average " temperature, and may be running a fever at 98.6 degrees. It is important to know the patient's " normal " temperature. Another problem which will probably face you is constipation. This is somewhat easier to control than other symptoms, but you do have to be aware of it and treat it. Many are able to treat it with stool softeners, diet or laxatives. Talk to your doctor about it. Sleep problems can also be a serious problem with the disorder. Often sleep apnea or REM problems crop up. If there is any problem with sleep check with your doctor as it could be serious. The doctor can decide if a sleep study is needed. To help the MSA patient, caregivers need to keep a log of symptoms. Daily temperature, blood pressure (BP), medicine schedules, and eating times are all important when it comes to deciding what treatment is best. Notes on when the patient felt best and was most active, as well as when they felt worst also help the doctor. The patient, caregiver and doctor must become a team to help the patient the most. Ruby Fraser wrote: > My husband is 64 years old and was diagnosed with Shy-Drager over a year > ago, after being misdiagnosed and not diagnosed for about three years. I am > interested in home care suggestions as I have to work full-time and > presently he is at home with my mother, who is leaving in a month. Is adult > day care an option? He stays in bed mostly because of balance difficulties, > but can walk short distances with a walker. Of course he goes out with a > wheelchair. We also have our bedroom upstairs and the stairs are a problem, > and moving downstairs would mean major remodeling. We have considered a > stair chair lift (Silver Glide). Have any of you had similar experiences, > and how did you handle them? We don't know anyone else with this condition, > and my husband is still not wanting to be with others like himself, if we > could find them. The doctors don't seem to have other patients with whom to > put us in contact. > > I would appreciate some advice from other patients or caregivers. Thank > you. > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 Bill: We've been looking for a " companion " for some time now, for my Dad. We don't feel that we need the full services of a home health aide (bathing, etc), but rather someone to sit with him about 4 hrs a day and assure he does not fall - get him things if he needs them. And, call family if there is anything needed above that. We have had no luck in finding anyone! We've been posting adds at colleges, have been making the need clearly known through our church, but never thought of a Senior Home (as you have mentioned below). What type of a Senior Home had you thought of exploring these services from? Suzanne Grimmesey-Kirk, MFT Quality Care Management Voice: 884-1647 FAX: 884-1633 >>> bwerre@... 04/27/01 01:06PM >>> Ruby, Welcome, sorry you had to find us. We do have a Silver Glide stairlift (since 1998) and it works fine. Daycare is an option at this stage as long as he can sit in a wheelchair (W/C) comfortablely. You do want to make sure the W/C is a good one and fits him well. Some of us hire someone to come in part time and others have had to hire full time help. I retired when it became too much, but worked part time for another 4 years. Your Health Department may be of some help in finding a person to come in to bathe him, but not full time care. Talk to your local Agency on Aging, they often know of resources. How much care does he need? If you only want someone to be with him and provide minor help, maybe you can find someone at a Senior Home who will come in and sit with him. Your church may be able to help. Below, I've added an email I send out to new members with general info. Hope this helps with your questions. Feel free to contact us on or off the list any time. Tell us what general area you live in and we can tell you if we know of anyone in your general area. Take care, Bill and Charlotte Werre in Herndon, VA USA (20 miles west of Washington, DC) Welcome to the Shy-Drager - MSA support list. In 1995 doctors decided that MSA or Multi-System Atrophy was a better name for Shy-Drager Syndrome, sporadic OPCA and SND. This email is to give you some introductory information about the disorder only. It should also clear up some misleading info on the internet. First of all, don't believe everything you read about MSA or Shy-Drager Syndrome. Our experience is that you could have 27 years yet. Many people have lived more than 20 years with it. There are new research results published every day. So much brain research has advanced since 1993, that there is now some hope a cure could be found in as little as five years. Concentrate on what you can do. Exercise does help keep movement. You need to start a daily exercise program now (everyday). In particular, you need to work on range of motion exercises (warm-ups or arthritis type). You must also work on speech exercises. Your volume will probably go down slowly and you will not know it, so get Rose's speech exercises and start them now. They are on this site http://groups.yahoo.com/group/shydrager/files/Various+MSA+Information+Sheets/Spe\ ech+%26 +Swallowing/ Or if you can not reach that site try: http://freepages.health.rootsweb.com/~charmayn/ Another important item with MSA is the fact that your swallowing muscles tend to lose their strength and if you do not keep them exercised, you will lose some or all of your ability to swallow. Liquids in particular are difficult for many MSA patients. This can lead to dehydration and urinary tract infections (UTI). Infection of any type (UTI, pneumonia, blood, or even yeast) is dangerous to MSA patients. MSA patients often run a lower than normal " average " temperature, and may be running a fever at 98.6 degrees. It is important to know the patient's " normal " temperature. Another problem which will probably face you is constipation. This is somewhat easier to control than other symptoms, but you do have to be aware of it and treat it. Many are able to treat it with stool softeners, diet or laxatives. Talk to your doctor about it. Sleep problems can also be a serious problem with the disorder. Often sleep apnea or REM problems crop up. If there is any problem with sleep check with your doctor as it could be serious. The doctor can decide if a sleep study is needed. To help the MSA patient, caregivers need to keep a log of symptoms. Daily temperature, blood pressure (BP), medicine schedules, and eating times are all important when it comes to deciding what treatment is best. Notes on when the patient felt best and was most active, as well as when they felt worst also help the doctor. The patient, caregiver and doctor must become a team to help the patient the most. Ruby Fraser wrote: > My husband is 64 years old and was diagnosed with Shy-Drager over a year > ago, after being misdiagnosed and not diagnosed for about three years. I am > interested in home care suggestions as I have to work full-time and > presently he is at home with my mother, who is leaving in a month. Is adult > day care an option? He stays in bed mostly because of balance difficulties, > but can walk short distances with a walker. Of course he goes out with a > wheelchair. We also have our bedroom upstairs and the stairs are a problem, > and moving downstairs would mean major remodeling. We have considered a > stair chair lift (Silver Glide). Have any of you had similar experiences, > and how did you handle them? We don't know anyone else with this condition, > and my husband is still not wanting to be with others like himself, if we > could find them. The doctors don't seem to have other patients with whom to > put us in contact. > > I would appreciate some advice from other patients or caregivers. Thank > you. > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 Suzanne, Check out the Independant Living homes - they often have people looking for jobs to make a few bucks. My mom posted a notice on the bulletin board and got someone to come in and just sit for minimum wage. Another option is teens who are being emacipated from their parents by the courts and still in school. In this case, you do have to be careful about the teen you accept. But there are teens who are great, with parents who are complete fools. Here again, your Area Agency of Aging has lists of resources available. Some nursing facilities offer great daycare programs (in my area they are far too expensive). Our county offers daycare, BUT they have no place for Charlotte to lay down and she needs at least one hour out of three to lay down. Take care, Bill and Charlotte ======================== Suzanne Grimmesey-Kirk wrote: > Bill: > We've been looking for a " companion " for some time now, for my Dad. We don't feel that we need the full services of a home health aide (bathing, etc), but rather someone to sit with him about 4 hrs a day and assure he does not fall - get him things if he needs them. And, call family if there is anything needed above that. We have had no luck in finding anyone! We've been posting adds at colleges, have been making the need clearly known through our church, but never thought of a Senior Home (as you have mentioned below). What type of a Senior Home had you thought of exploring these services from? > > Suzanne Grimmesey-Kirk, MFT > Quality Care Management > Voice: 884-1647 > FAX: 884-1633 > > >>> bwerre@... 04/27/01 01:06PM >>> > Ruby, > > Welcome, sorry you had to find us. We do have a Silver Glide stairlift (since > 1998) and it works fine. Daycare is an option at this stage as long as he can > sit in a wheelchair (W/C) comfortablely. You do want to make sure the W/C is a > good one and fits him well. > > Some of us hire someone to come in part time and others have had to hire full > time help. I retired when it became too much, but worked part time for another > 4 years. Your Health Department may be of some help in finding a person to come > in to bathe him, but not full time care. Talk to your local Agency on Aging, > they often know of resources. > > How much care does he need? If you only want someone to be with him and provide > minor help, maybe you can find someone at a Senior Home who will come in and sit > with him. Your church may be able to help. > > Below, I've added an email I send out to new members with general info. Hope > this helps with your questions. Feel free to contact us on or off the list any > time. Tell us what general area you live in and we can tell you if we know of > anyone in your general area. > > Take care, Bill and Charlotte Werre in Herndon, VA USA (20 miles west of > Washington, DC) > > Welcome to the Shy-Drager - MSA support list. In 1995 doctors decided that MSA > or Multi-System Atrophy was a better name for Shy-Drager Syndrome, sporadic OPCA > and SND. This email is to give you some introductory information about the > disorder only. It should also clear up some misleading info on the internet. > > First of all, don't believe everything you read about MSA or Shy-Drager > Syndrome. Our experience is that you could have 27 years yet. Many people have > lived more than 20 years with it. There are new research results published > every day. So much brain research has advanced since 1993, that there is now > some hope a cure could be found in as little as five years. > > Concentrate on what you can do. Exercise does help keep movement. You need to > start a daily exercise program now (everyday). In particular, you need to work > on range of motion exercises (warm-ups or arthritis type). You must also work > on speech exercises. Your volume will probably go down slowly and you will not > know it, so get Rose's speech exercises and start them now. They are on this > site > > http://groups.yahoo.com/group/shydrager/files/Various+MSA+Information+Sheets/Spe\ ech+%26 > +Swallowing/ > > Or if you can not reach that site try: > > http://freepages.health.rootsweb.com/~charmayn/ > > Another important item with MSA is the fact that your swallowing muscles tend to > lose their strength and if you do not keep them exercised, you will lose some or > all of your ability to swallow. Liquids in particular are difficult for many > MSA patients. This can lead to dehydration and urinary tract infections (UTI). > Infection of any type (UTI, pneumonia, blood, or even yeast) is dangerous to MSA > patients. MSA patients often run a lower than normal " average " temperature, and > may be running a fever at 98.6 degrees. It is important to know the patient's > " normal " temperature. > > Another problem which will probably face you is constipation. This is somewhat > easier to control than other symptoms, but you do have to be aware of it and > treat it. Many are able to treat it with stool softeners, diet or laxatives. > Talk to your doctor about it. > > Sleep problems can also be a serious problem with the disorder. Often sleep > apnea or REM problems crop up. If there is any problem with sleep check with > your doctor as it could be serious. The doctor can decide if a sleep study is > needed. > > To help the MSA patient, caregivers need to keep a log of symptoms. Daily > temperature, blood pressure (BP), medicine schedules, and eating times are all > important when it comes to deciding what treatment is best. Notes on when the > patient felt best and was most active, as well as when they felt worst also help > the doctor. The patient, caregiver and doctor must become a team to help the > patient the most. > > Ruby Fraser wrote: > > > My husband is 64 years old and was diagnosed with Shy-Drager over a year > > ago, after being misdiagnosed and not diagnosed for about three years. I am > > interested in home care suggestions as I have to work full-time and > > presently he is at home with my mother, who is leaving in a month. Is adult > > day care an option? He stays in bed mostly because of balance difficulties, > > but can walk short distances with a walker. Of course he goes out with a > > wheelchair. We also have our bedroom upstairs and the stairs are a problem, > > and moving downstairs would mean major remodeling. We have considered a > > stair chair lift (Silver Glide). Have any of you had similar experiences, > > and how did you handle them? We don't know anyone else with this condition, > > and my husband is still not wanting to be with others like himself, if we > > could find them. The doctors don't seem to have other patients with whom to > > put us in contact. > > > > I would appreciate some advice from other patients or caregivers. Thank > > you. > > _________________________________________________________________ > > Get your FREE download of MSN Explorer at http://explorer.msn.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2001 Report Share Posted July 26, 2001 Welcome to the list. You should be able to get answers to a lot of your questions from members of this list. I also have a two year old with speech issues. TJ has a handful of words that are understandable and the rest need work. He has been in ST for over a year which has helped a lot. Like you son, he makes his needs known in other ways. Meribeth > I am a parent of a 26 month old infant who has been recently > diagnosed as RSS. > This follows nearly two years of hospital visits, tests and being > written off as a nurotic mother. > The relief of finally having a 'name' for the problems to which my > son has is undescrible. Finally I can tell all the 'do-gooders' who > offer their opinions of " don't worry he's happy. " , " I'm sure he wll > have a growth spurt " and " not all two year olds can talk " . > > Although Ben doesn't have low blood sugar he does have a tendincy to > be anemic, is this common? Also he has a heart murmer, is this a > trait or a seperate problem. > > Any communication from other parent would be most welcome. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2001 Report Share Posted August 1, 2001 Dear Joan, Welcome to our great big family. I think that you are going to find lots of support and advice and shoulders to cry on when you are really frustrated. I am one of the older members of the group. I have two children, one who is 13 and has RSS. Most people who read this list serve know Max very well. Max has been on gh since just before he turned 3 years old. He has grown, filled out and become stronger as a result. Unfortunately, we are now facing something called gh resistance, but that is another story. Don't worry. I am not worried and I will leave it at that. You are far from that problem now anyway. You have asked about something to increase your son's appetite...Have you tried cyproheptadine? It is also called Periactin. It is an antihistamine that has the " side effect " of increasing appetite. Many of our RSS children use this medication with a lot of success. I do not have the dosage amounts handy right now, but if you want them, then I will look them up. You have to have it prescribed by a doctor, though. As for telling your son about RSS, I think that you should do it right away. All you have to do is tell him that it is something that makes him have trouble growing. You are doing what you can to help him, but sometimes giving it a name helps him psychologically adjust to it. There are also several children your son's age who would probably be interested in emailing each other. I think there is even a list serve for RSS kids now, too. Have you joined the MAGIC Foundation yet? It is an organization of many growth disorders in children, with one specifically for those with RSS. We just had our convention in July and it was a great success. For $25 a year you get a quarterly newsletter, access to free copies of all the medical articles related to RSS, networking with other parents, information about the yearly convention in Chicago, and many more things. You can check out the website at www.magicfoundation.org . I am also the Email Coordinator for the RSS Division so I can help you with more info if you would like. Salem is the Division Consultant. I'm sure you will hear from her, too. Please feel free to email me at z4all@... or magicrss@... - or you can contact at magicrss@... . Keep us posted, okay? Jodi New member > Hi! My name is Joan. My son's name is Ian Christian, he's 7y old, on > october he will be 8. He's weith is 32pounds and he's 43 inches tall. > He was diagnos with RSS. We are from Puerto Rico but living now in > South Carolina. He's been seing Dr.Heinze from SC University, Ian's > been using the GH for about 10months, grow since we start 2 1/2in and > about 2 pounds. I was wondering if some one with older kid have use > GH and if it is worthed. He still having problems eating(is there > someting that work that could help?). He's starting to ask me why is > he small. I haven't tell him about his condition, Do you think is > time to talk with him about RSS, and how can I do it?I will realy > apriciate any help. P.S Pardon my writing because my first language > is spanish. THANKS > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 Hola Joan: My name is ali and I live in Texas, but am of Mexican decedents. I too speak spanish. I've been in the group for only a couple of weeks and am amazed at how much info you get. You are more then welcomed to e-mail me if you unwind in the spanish language. Adios, -ali --- almo1@... wrote: > Hola Joan: > Mi name is and I live in Spain. I have been > with the group now > for a while, and I have to tell you that in this > group you are going > to find all the support that you need. > I know that sometimes is difficult to express your > problems in > another lenguage so if you want to email me in > spanish I will be > happy. As you probably may know, is Spain is summer > time, so I will > be out until next wednesday. > Welcome to the group. > José > > > Hi! My name is Joan. My son's name is Ian > Christian, he's 7y old, > on > > october he will be 8. He's weith is 32pounds and > he's 43 inches > tall. > > He was diagnos with RSS. We are from Puerto Rico > but living now in > > South Carolina. He's been seing Dr.Heinze from SC > University, Ian's > > been using the GH for about 10months, grow since > we start 2 1/2in > and > > about 2 pounds. I was wondering if some one with > older kid have use > > GH and if it is worthed. He still having problems > eating(is there > > someting that work that could help?). He's > starting to ask me why > is > > he small. I haven't tell him about his condition, > Do you think is > > time to talk with him about RSS, and how can I do > it?I will realy > > apriciate any help. P.S Pardon my writing because > my first language > > is spanish. THANKS > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 Joan, I am so proud of you for doing this for your son! What a great mom you are! Now both you and Ian can talk about RSS and his growth problems and it has a very important thing - a name. Somehow, by putting a name to whatever is going on helps us deal with it. Now about the MAGIC Foundation. You should check out the website at www.magicfoundation.org. For a fee of $25 a year, you will receive a quarterly newsletter, free copies of any/all medical articles related to RSS (once you request them - I can forward a list of the names of the articles), a yearly convention in Chicago in July, networking with other parents, a growth chart for children with RSS and a whole world of knowledge about RSS. Also, you would be able to purchase video tapes of Dr. Harbison's talks at previous conventions as well as videos of other speakers. I think I have listed all of the benefits.... Please feel free to email Pam at pam@... and she will send a membership packet to you right away. You will also hear from Salem, the Division Consultant for RSS. You may reach her at magicrss@... . If you have any other questions, please let me know. I know I typed up a lot at once, but I am in a rush to take my daughter to meet her friends and I wanted to get to you right away. Jodi Re: New member > Hi. After I read Jodi's e-mail I decided to talk to Ian about it. It went > well although when I told him what was RSS he had tears in his eyes I asked > why, and he though that he was going to stay small and skinny. So I tried to > explain that wasn't going to be as small as now, that he was going to grow > but that other kids were going to be a little bit bigger than him. I told him > he wasn't the only kid with RSS and show him a couple of photos from RSS > files after that he felt OK and told me that he was going to eat everything > and faster so that could help him. I think that went OK and wasn't as bad as > I imagine it could be. > Jodi I would like more information about join Magic Foundation. > THANKS for your help, Joan > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Jodi: Could be possible that you could send me a list of the RSS articles, I really want to have them. Ah! I'm already member of magic. Thanks Betty Re: New member Joan, I am so proud of you for doing this for your son! What a great mom you are! Now both you and Ian can talk about RSS and his growth problems and it has a very important thing - a name. Somehow, by putting a name to whatever is going on helps us deal with it. Now about the MAGIC Foundation. You should check out the website at www.magicfoundation.org. For a fee of $25 a year, you will receive a quarterly newsletter, free copies of any/all medical articles related to RSS (once you request them - I can forward a list of the names of the articles), a yearly convention in Chicago in July, networking with other parents, a growth chart for children with RSS and a whole world of knowledge about RSS. Also, you would be able to purchase video tapes of Dr. Harbison's talks at previous conventions as well as videos of other speakers. I think I have listed all of the benefits.... Please feel free to email Pam at pam@... and she will send a membership packet to you right away. You will also hear from Salem, the Division Consultant for RSS. You may reach her at magicrss@... . If you have any other questions, please let me know. I know I typed up a lot at once, but I am in a rush to take my daughter to meet her friends and I wanted to get to you right away. Jodi Re: New member > Hi. After I read Jodi's e-mail I decided to talk to Ian about it. It went > well although when I told him what was RSS he had tears in his eyes I asked > why, and he though that he was going to stay small and skinny. So I tried to > explain that wasn't going to be as small as now, that he was going to grow > but that other kids were going to be a little bit bigger than him. I told him > he wasn't the only kid with RSS and show him a couple of photos from RSS > files after that he felt OK and told me that he was going to eat everything > and faster so that could help him. I think that went OK and wasn't as bad as > I imagine it could be. > Jodi I would like more information about join Magic Foundation. > THANKS for your help, Joan > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 Hello, My name is simone price. I am new to this group. I just found out my 2 year old daughter has RSS. At least, thats what the doctors think, after numerous tests (on urine and DNA). She is very small for her age and doesn't walk yet (she turns 3 in March so she is late) and also has a difficulty talking (she can say a number of words now but you can't really make a conversation with her). She has incurved little fingers but thats it. I just want to come in contact with parents who have a child with RSS, also parents with older children. Curious how they have grown. I also want to know more about using hormones (results and side effects) Another thing I would like to know if there are any parents in this group with RSS children who are from Holland. Its hard to get information here so I turned to the Magic Foundation. Thanks to everyone who wants to fill me in on any information you have. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 Hi there a big warm welcome to the group. I can feel your frustration. Have you determined a trigger for your hives? What antihistimines have you tried? Have you tried them in combination? Has your doctor ordered any labwork? Have you had any dental work done? I am sorry to say but most likely you will most likely have to take charge of getting to the bottom of your CU. There are lots of reasons for having CU, none are easy. But ask questions here and hopefully someone will have an answer. Love, ~Alena's Mom New Member > Hello my name is Chris. 18yr old and had a severe case of hives since > about 8 months ago. At first I really didnt know what it was but > after making a fool of myself in the ER and finally doing some > research, Im now enlightened. I took prednisone 25-60mgs a day, which > dint do much. Also took Hydroxyzine which help a little and claritin > which is useless. I was really depress then when I had a severe case > and nearly collapse passing out in the bathroom. It was embarassing > in school when my arms are all red and I try to hide it but my worst > fear is when I break out on my face. School starts next week which is > really bad since I now break out at an alarming frequency(several > times or throughout the day). I basically gave up on Antihistamines > since I dont seek temporary relief but a CURE!! It really pisses me > off that with our current technology, we dont a cure for something > that affects 15% of the world population. > ARRGHH Im just frustrated. This is killing me! I have no social life > bcuz of this. Just when I had so much expectations, This had to > happen. And I will enlist in the army next year and have so much > planned out for my future and I know this will affect me someway. > I read that It will eventually go away which I hope will happen soon > cuz I CANT LIVE LIKE THIS. > Im a bodybuilder and was planning on competing soon but this is > messing with my training and pretty much everything. > ALL MY DREAMS seems so much harder to attain. > But I know I will overcome this... I hope > > > > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > If you do wish to unsubscribe then you can click on the following link: > urticaria-unsubscribeegroups > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. > > We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. Information provided in this forum is not to be taken as medical advice. Always consult your health professional before trying anything new. > > Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 Chris: I remember saying those exact words.... " I can't live like this " . It is frustrating to say the least. I have read most of the current medical literature out there on chronic urticaria. Physicians are finding out that more and more cases are due to an autoimmune disease of some sort. As far as the antihistamines go, you probably will have to find a combination that works for you. You will get used to them and learn to function normally. The upside is that many of us find that our symptoms are greatly minimized by the antihistamines. Find an MD who is willing to listen to you and try finding a combination of antihistamines that will work for you. take care, ~Ramona~ > Hello my name is Chris. 18yr old and had a severe case of hives since > about 8 months ago. At first I really didnt know what it was but > after making a fool of myself in the ER and finally doing some > research, Im now enlightened. I took prednisone 25-60mgs a day, which > dint do much. Also took Hydroxyzine which help a little and claritin > which is useless. I was really depress then when I had a severe case > and nearly collapse passing out in the bathroom. It was embarassing > in school when my arms are all red and I try to hide it but my worst > fear is when I break out on my face. School starts next week which is > really bad since I now break out at an alarming frequency(several > times or throughout the day). I basically gave up on Antihistamines > since I dont seek temporary relief but a CURE!! It really pisses me > off that with our current technology, we dont a cure for something > that affects 15% of the world population. > ARRGHH Im just frustrated. This is killing me! I have no social life > bcuz of this. Just when I had so much expectations, This had to > happen. And I will enlist in the army next year and have so much > planned out for my future and I know this will affect me someway. > I read that It will eventually go away which I hope will happen soon > cuz I CANT LIVE LIKE THIS. > Im a bodybuilder and was planning on competing soon but this is > messing with my training and pretty much everything. > ALL MY DREAMS seems so much harder to attain. > But I know I will overcome this... I hope Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 <<< I basically gave up on Antihistamines since I dont seek temporary relief but a CURE!! It really pisses me off that with our current technology, we dont a cure for something that affects 15% of the world population. -- And I will enlist in the army next year --- Im a bodybuilder ... >>> ... Hi -- I believe that most of us here know there is not a cure; there is only control with the grouping of medications that works for you. This often varies from person to person. I think joining the army is a problem when s person has a chronic illness --- You are a body builder -- interesting. I don't think we have had a person in the group (correct me, I could be wrong) who is this physically active. I wonder --- (?) Do you have any idea why/how this began with you, Chris? I do know it is so hard to think way-back. I have found it to be very helpful to keep a daily diary. I write down "basics" of what I eat. I count my hives and write down where they occur and when, during the day, they have gone. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 Hi Simone: My name is Betty I live in Mexico City, my son is 21 months and has a pre diagnostic of RSS, he has the incurves 5th finger, triangular face, his height is 80 cm and weight almost 8 kg. He doesn't have problems in walk and his talk is considered normal to his age, I have found I lot of support in this list and I'm sure you are going to fine the same. betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 Hi . A big warm welcome to our group. Nope you are not a freak. I am glad you have been able to track your reason for hives. That is a big step. As far as children outgrowing CU. There is a "thought" that CU will disappear as magically as it came. However, I have yet to see that happen. My daughters CU started when she was a few months old and I was told she would definately be rid of them in 6 weeks, then when that passed I was told she would be completely cured of them before she turned 1. She turned 1 and two and in a few weeks 3 years old and the CU is still here. Love, ~Alena's Mom ps what do you teach? My husband teaches part time at a college too. new member That is, I am new to the group, not to the condition of CU. I have been reading these messages for a few days and am finding lots of useful information. I am in my third episode of CU: the first was five years ago, and lasted 6 months; the second was in January and lasted two months; this third outbreak is six weeks old. My case is not idiopathic (doctor code for, duh, i dunno, must be in your head). I know that my tirgger is laundry soap which has the word Ultra on the box--it contains a chemical called carezyme, which bonds to cotton molecules so that your cottons do not fade or pill (oh, what a relief...nice bright cottons to cover the hives...). This product cannot be washed out of clothing. Proctor and Gamble sent a cheque for 6oo dollars after the first outbreak with the agreement that I not sue them...I assessed my hassle-to-cost ratio and cashed the cheque. (I have extended medical, luckily, so my drugs are free.) Though I know my trigger, soap is very hard to avoid--someone brushes against me, I touch a napkin, towel, etc. One sensitized by the soap, I react to many other allergins and have been in anapylactic shock once. (I caryy an epi pen at all times.) I find that an episode simply has to run its course. It is a huge drag but not as bad as a life-threatening or painful disease. I begin with large doses of prednisone over a few weeks combined with antihistimines; I first taper off the prednisone and then off the antihistimines more gradually. As far as the look of the hives goes, to hell with it. I do not cover myself up, I wear what is comfortable. Many people in this world are disfigured in one way or another, and there are much worse things than swollen lips and splotches. I am a professor, so when I am in a bad way, I explain to my students and then carry on with the lecture (it is hard to hide in front of a lecture hall). The worst part for me is the itching, and I do get depressed about my inability to quickly control this condition. As far as activity goes, I am a committed runner and have been since my teens. I also ride a motorcycle, epi pen on hand. Even though activity sometimes makes the hives worse, it makes my mind better, so I carry on with it. I try not to obsess over the CU, because that does not help me. I do not take any patronizing crap from physicians or others who tell me it is all in my head, and I read everything I can on the condition--it makes me feel more in control. As far as autoimmune disorders go, my sister-in-law has just discovered that she has MS, which has been good for my sense of cosmic fairness. It has been great to hear your voices--I still feel itchy but less of a freak. I particularly am moved by the mothers whose kids have this unpleasant condition--it is rough to watch kids in discomfort. I wonder if they are likely to grow out of this, as kids with asthma and other alleriges often do. We live in hope. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~If you do wish to unsubscribe then you can click on the following link: urticaria-unsubscribeegroups~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. Information provided in this forum is not to be taken as medical advice. Always consult your health professional before trying anything new.Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings. Quote Link to comment Share on other sites More sharing options...
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