Guest guest Posted May 14, 2001 Report Share Posted May 14, 2001 Hello and welcome. patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2001 Report Share Posted May 14, 2001 Hello and welcome. patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2001 Report Share Posted May 26, 2001 My heart goes out to you. Please, request genetic testing done w/ blood test. My daughter was tested at 9 mos and 6 - BOTH Negative - it was the blood test that cinched her diagnosis. Yes, she had clubbing, green sputum and scar tissue in her lungs - all the " signs " but the blood test gave the Drs. the conclusive answer. It really sucks. Having to function and pretend everything is OK....while trying to absorb all kinds of information. Don't be so hard on yourself and take it one day at a time. We have all been in that FOG and we are all here for you...... Take care of yourself.... Rosemary in New York with 3 kids 10.8, 8 and Dylan 4 all with CF - the luck of the IRISH! who has patented the phrase " BREATHE DAMMIT " and " SIT ON IT " ....I am talking about the vest! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2001 Report Share Posted May 26, 2001 My heart goes out to you. Please, request genetic testing done w/ blood test. My daughter was tested at 9 mos and 6 - BOTH Negative - it was the blood test that cinched her diagnosis. Yes, she had clubbing, green sputum and scar tissue in her lungs - all the " signs " but the blood test gave the Drs. the conclusive answer. It really sucks. Having to function and pretend everything is OK....while trying to absorb all kinds of information. Don't be so hard on yourself and take it one day at a time. We have all been in that FOG and we are all here for you...... Take care of yourself.... Rosemary in New York with 3 kids 10.8, 8 and Dylan 4 all with CF - the luck of the IRISH! who has patented the phrase " BREATHE DAMMIT " and " SIT ON IT " ....I am talking about the vest! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2002 Report Share Posted April 22, 2002 Heleen, Welcome to the group. I know you will find this listserve extremely helpful. I am fairly new here also, so I will let the other " senior " RSS parents fill you in on the important stuff, but I just wanted to say hello and welcome. (mom to , 4, and Christian (RSS) 18 mos., 14 lbs.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2002 Report Share Posted April 22, 2002 Heleen, Welcome to the group. I know you will find this listserve extremely helpful. I am fairly new here also, so I will let the other " senior " RSS parents fill you in on the important stuff, but I just wanted to say hello and welcome. (mom to , 4, and Christian (RSS) 18 mos., 14 lbs.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Hello Heleen, I am a member of this group since a month. First I will introduce myself and my family. My name is Milou and my husbands name is Pieter. We have three children. Pieter Bas, 11 years / Maartje, 9 years / Pomeline, 7 years and we also live in Holland. Maartje has RSS. She is little and thiny (now she is 123 cm), she has some characteristics of RSS like, triangular shaped face,incurving fifth finger,thin upper lip, downturned corners of the mouth, delayed bone age, migraine headaches and also asymmetry.The first two years we went every three months to the hopital to check her kidneys, but every thing was allright. The years after we went every year one time to her doctor in the academic hospital, one time to her doctor in the hospital in our city and one time to a orthopedian doctor. One year ago we started with growth hormone (she has no growth hormone deficiency). Now we see doctors all the time and that's not always easy. She has also problems now with the asymmetry. So I am trying to make an appointment with an academical orthopedian. Maartje is a very nice child. She never had problems, but now on this age it is more difficult for her to accept that she is a little bit different than other children and she feels unhappy about that. At school she is very good with her lessons, but she has problems to come up for herself. Because she is so little, a lot of other children want to do everything for her and she doesn't like that. Maartje has always live on a way like other children. When you see her you wouldn't say that there is something " wrong " with her. You have to know that she has RSS and than you can see it. In Holland you can't find much about RSS. I was surprised to read all the mails of this group. It gives answers on many questions. You ask also about bone age. The advantage of a younger bone-age than the natural age is that the childeren will maybe grow a longer time than if the bone-age is the same as the natural age. If you have other questions ask me if you want and maybe I can give you some information. Greetings, Milou Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Hello Heleen, I am a member of this group since a month. First I will introduce myself and my family. My name is Milou and my husbands name is Pieter. We have three children. Pieter Bas, 11 years / Maartje, 9 years / Pomeline, 7 years and we also live in Holland. Maartje has RSS. She is little and thiny (now she is 123 cm), she has some characteristics of RSS like, triangular shaped face,incurving fifth finger,thin upper lip, downturned corners of the mouth, delayed bone age, migraine headaches and also asymmetry.The first two years we went every three months to the hopital to check her kidneys, but every thing was allright. The years after we went every year one time to her doctor in the academic hospital, one time to her doctor in the hospital in our city and one time to a orthopedian doctor. One year ago we started with growth hormone (she has no growth hormone deficiency). Now we see doctors all the time and that's not always easy. She has also problems now with the asymmetry. So I am trying to make an appointment with an academical orthopedian. Maartje is a very nice child. She never had problems, but now on this age it is more difficult for her to accept that she is a little bit different than other children and she feels unhappy about that. At school she is very good with her lessons, but she has problems to come up for herself. Because she is so little, a lot of other children want to do everything for her and she doesn't like that. Maartje has always live on a way like other children. When you see her you wouldn't say that there is something " wrong " with her. You have to know that she has RSS and than you can see it. In Holland you can't find much about RSS. I was surprised to read all the mails of this group. It gives answers on many questions. You ask also about bone age. The advantage of a younger bone-age than the natural age is that the childeren will maybe grow a longer time than if the bone-age is the same as the natural age. If you have other questions ask me if you want and maybe I can give you some information. Greetings, Milou Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2002 Report Share Posted April 27, 2002 Hi Ken, Thanks for your welcome. I saw I didn't answer your question about Sara's appetite. It is oke. She eats bread, fruit, every candy my other kids are getting she wants to. Icecream you name it. But it didn't putt on more weight on her. I don't know what else I can give her. To give her the usual things takes already enough time. My other kids need to be reminded to eat too. Not that there is something wrong with them. But they keep playing. The first year with Sara it was very hard to make her eat. With all the things I hear from others we got her to take her milk. Now she sometimes eats more than her sister (5 years old). love Heleen --- kmerrith wrote: > Hi Heleen, > > Welcome to our group. > > I hope we can answer all your questions. > > You asked about bone age. Bone age just gives you an > idea about how > well your daughter is growing. > > How is your daughter's appetite? If it is very bad > you might want to > ask your doctor about using periactin ( > cyproheptadine ) as an > appetite stimulant. This is an antihistamine which > is used for > relieving cold symptoms and treating allergies. Like > almost all > antihistamines it tends to make one drowsy and > somewhat cranky. Not > all children do well on it. > > You may want to get in touch with Nonjia Rosen. I > belive she lives in > Belgium or The Netherlands. Not too far from you. > Her e-mail address is > nonjia.rosen@... > > Please feel free to ask any question. > > I hope this helps. > > Ken M > > > > > > > Hello everybody, > > > > We're new here on the group. > > I would like to introduce ourself. > > My name is Heleen Greeve. I'm married to Klaas > Greeve. > > We have three children. Christy 5 years, Rick 3 > years and Sara 15 > > months. > > In januari of this year (2002) Sara was diagnosed > with RSS. > > She weights 12 pounds now and is 70 cm . > > She has a triangled face with lots lots of hair. > > Her two little fingers are curved, and two toos > are together. > > The first year it was very hard to get some food > into her. But not as > > hard as I read here. I don't know what a G-tube is > but I think it is > > to feed the children with it. Sara didn't need > that until now. > > Now she eats everything. Not as much as I would > like but she eats > > herself (with a little help ofcourse). > > Sara has no asymmetry. Her kidneys are checked and > her growthhormones > > are good. > > I don't know about the her bone-age. They x-rayed > her bones but they > > didn't tell us anything about bone-age. > > I didn't know it was importent but now I read the > mails here and I > > see every time things about the bone-age. I will > ask next time > > Maybe anyone can tell me things I need to know > about RSS to ask my > > docter. > > > > I was very glad to find this group. Here in > Holland I can't find so > > much about RSS. > > > > Heleen > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 Well hello, I am trying to try the SCD but have been falling off a lot. So I decided to join this to see if this would help me. I have had ulcerative colitis for about 12 years or most of my life but was diagnosed about a year ago finally. It has been a long journey but I still am struggling with symptoms. The medicines do not seem to be working although my symptoms are real bad in the morning and then settle in throughout the day. Is the diet helpful if you cheat a little? It seems so intimidating to have no grains. But as I read some of the posts here I see that others can do it... so why shouldn't I be able to. I guess it just takes a huge amount of will power. Anyway, I have made some muffins with coconut flour and coconut oil... but I used almond milk which when I read the ingredients not to long ago it has evaporated cane juice and soy lecithin. So it is probably illegal. But is that little bit in some things going to cause the diet to not work? If so, I need some alternatives then. Thanks for the help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 > Well hello, > I am trying to try the SCD but have been falling off a lot. So I > decided to join this to see if this would help me. I have had > ulcerative colitis for about 12 years or most of my life but was > diagnosed about a year ago finally. It has been a long journey but I > still am struggling with symptoms. The medicines do not seem to be > working although my symptoms are real bad in the morning and then > settle in throughout the day. Is the diet helpful if you cheat a > little? Not so much because the point of the diet is to eliminate pathogenic bacteria, and if you cheat, they will have plenty to munch on. It might help somewhat, but it will also slow your progress way down. > It seems so intimidating to have no grains. But as I read some of > the posts here I see that others can do it... so why shouldn't I be > able to. I guess it just takes a huge amount of will power. Anyway, > I have made some muffins with coconut flour and coconut oil... coconut flour is considered advanced - not the best thing for beginners - but by all means continue with the coconut oil. > but I used almond milk which when I read the ingredients not to long > ago it has evaporated cane juice and soy lecithin. So it is probably > illegal. But is that little bit in some things going to cause the > diet to not work? If so, I need some alternatives th! > en. You can make you own almond milk which is really easy. You simply mix a quart of water with 1 3/4s cup of almond meal and 2 Tablesp. honey, blend for 7-10 mins and then pour through a cheesecloth or dishtowel. And then when the water goes out, squeeze out the rest. Voila almond milk. Mara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 At 12:24 PM 3/27/2009, you wrote: But is that little bit in some things going to cause the diet to not work? If so, I need some alternatives then. Welcome to the list! Yes, I'm afraid the little cheats do have an effect on your healing. The objective of SCD is to starve out the bad bacteria in your gut. If you continue to feed them sugar and starch, whether it's " raw cane juice " in commercial almond milk or grains in something else, you're handing them a major smorgasbord. Be aware that coconut flour can have a major amount of fiber in it and is often considered a very advanced food, especially if you are just getting started. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2009 Report Share Posted March 29, 2009 Ack okay well the last email I sent kinda sent itself before I was done...Anyways, I'm new, and I'm just starting to introduce the SCD. I was wondering if maybe you guys could tell me a little bit about your condition and what has helped you and how the diet is working and such. I have ulcerative colitis, and I was on Klein's self healing diet for awhile which put me in the hospital for dehydration. Not a good experience. Now I've been on a diet with no gluten, dairy, legumes, citrus, refined sugar, or red meat, and it's helping, but just recently I had another flare up so I want to try this diet to see if it will give me more solid results. Has anybody had goat or sheep cheese? Is it allowed on this diet? I hear it's easier to digest. And also, I've been getting mouth ulcers, does that mean I may have Crohns instead of colitis?Thanks!! =)ALP.S. How do you start a new thread? I just replied to a random email b/c I don't know how...At 12:24 PM 3/27/2009, you wrote:But is that little bit in some things going to cause the diet to not work? If so, I need some alternatives then.Welcome to the list!Yes, I'm afraid the little cheats do have an effect on your healing. The objective of SCD is to starve out the bad bacteria in your gut. If you continue to feed them sugar and starch, whether it's "raw cane juice" in commercial almond milk or grains in something else, you're handing them a major smorgasbord.Be aware that coconut flour can have a major amount of fiber in it and is often considered a very advanced food, especially if you are just getting started.— Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2009 Report Share Posted March 29, 2009 Hi AL, Starting a new thread you can either; a) go to top left side and click on " post " bottom right under window it says " start topic " And walla.. Mouth sources can happen to all IBD'ers. It can also be a sign of Anemia and malabsorption. Goats and sheeps cheese need to be aged as well as cow cheese. We can also have our own fermented 24 hour yogurt which we can make out of goat, sheeps or cows milk (I have still yet to hear if someone ventured into making camel milk yogurt! I heard camel milk is very good for IBD) This diet calls for fanatical adherence but it is the first thing to help this wicked Crohn's I have had with no remission. It is a slow and steady process and calls for hard work and dedication. But it is so well worth it! Anyway, welcome to our SCD abode.. I suggest you keep asking questions and get settled in!! Jodi Quote Link to comment Share on other sites More sharing options...
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