Guest guest Posted October 27, 1999 Report Share Posted October 27, 1999 In a message dated 10/27/99 10:05:42 AM Central Daylight Time, kayday@... writes: << If things are so wonderful, I bet you are wondering why I'm on this list - I still need your support and friendly advice. >> Kay, Hi and welcome. I'm new here too. This list is great for support. If these people cant motivate you, nobody can. (smiling) You have done sooooo good on this woe, that you can be a big help to others as well. Keep going, you are terriffic!! Sheila In Texas 187/181/135 HAPPY HALLOWEEN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 1999 Report Share Posted October 28, 1999 Dear Kay: Welcome to this list. I think you have come to the right spot for support in coming here. You were very smart to catch yourself after a week of indulgence. Get straight back to induction!!! Grace 206+/192/150 started 9/8/99 14+ pounds gone forever! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2000 Report Share Posted March 1, 2000 To Jeanie! Good luck to you. I think there is a lot to learn about managing pain and depression in your message. Can you describe more exactly what the Therap.Massage Spec. do to help you with the pain? Many regards from Rose in Sweden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2000 Report Share Posted March 1, 2000 To Jeanie! Good luck to you. I think there is a lot to learn about managing pain and depression in your message. Can you describe more exactly what the Therap.Massage Spec. do to help you with the pain? Many regards from Rose in Sweden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2000 Report Share Posted March 1, 2000 HI AND HAVE A GOOD MONTH WHAT IS THE< >? DIMITRIOS rose-marie.isakson@... wrote: > From: rose-marie.isakson@... > > To Jeanie! > > Good luck to you. I think there is a lot to learn about managing pain and > depression in your message. > Can you describe more exactly what the Therap.Massage Spec. do to help you > with the pain? > > Many regards from Rose in Sweden > > ------------------------------------------------------------------------ > MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click.egroups.com/1/2067/5/_/616793/_/951946759/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2000 Report Share Posted March 9, 2000 penny- First of all, welcome. A copule of things come to mind. First, you don't say anything here about eosinophils actually being found in the colon? or on biopsies? That is the only definitive way to diagnose GI eosinophilic diseaes. Secondly, there is no proven correlation between peripheral (blood) eosinophilic levels and eosinophilic enteropathies. One can have huge elevations of eos in the blood and have none in the GI tract and visa-versa. Another thought is that if his weight is at 90%, something is obviously working REALLY WELL. does anyone else on the list have a kid diagnosed with eos disease whose weight was this good? if in fact, your son does have some form of eosinophilic enteropathy, the docs are right in suggesting Neocate, or one of the amino-acid based formulas. Your son is young enough that it would be worth trying to " force " the issue a bit and see if you can get him to take it. If not, and he does in fact have one of the forms of GI eos disease, he could end up having a tube for the formula and you don't want that if you can avoid it. Most of our kids were diagnosed later and the tubes became a necessity for them. I hope they come up with some answers for you. It sounds like there are a LOT of questions still unanswered. ONe has to wonder if you are dealing with some food sensitivities or allergies and not with eos disease at all. Time will certainly tell as the biopsies will show eos eventually if he does in fact have eos disease. Good luck and again, welcome. Steph. [eosinophilic gastroenteritis] intro > > >Hi, >My name is Penny. I'm a mom to age 4, and Philip age 6.5 months. > was born with a cleft palate. We had a terrible time feeding him, but >finally learned about the Haberman feeder. He had formula and breastmilk via >this bottle. I pumped for six months, but gave up when my " output " fell to less >that 4oz a day. He was fine on the formula, but developed lactose intolerance. >He also had a mystery food allergy for about a year which gave him hives. He >had surgery for the cleft at 11 months, and now is " only " allergic to cats and >mold. >My baby, Philip, developed green poop at 5.5 wks of age. He was exclusively >breastfed. I looked it up in various baby books, but all said that it was >normal, or didn't say anything at all. I even forgot to say something at >Philip's 2 month checkup. After we got home that day, I noticed some blood in >his poop, so I called the doctor. He told me to go off milk. I did, but after >2 wks, there was no improvement. So the doctor ordered stool cultures and blood >tests. The stool tests revealed blood (duh!) and the blood tests showed that >he was slightly anemic and had an eosinophils level at 13. (13 percent?) >anyway the doctor said that it was the highest that he had seen in a child under >2. He said to give it some more time. When he was three months, on my own I >went off soy, peanuts, fish, shellfish (never ate it anyway) and corn. Then a >week later I went off wheat, eggs, nuts, citrus, and tomato. For a while I went >off potato, but that left me with not much to eat when we are out and about. >After Christmas, when Philip was 4 months old, we went to see a pediatric >gastroenterologist. Blood tests revealed that he had eosinophils at 9, and was >only borderline anemic. She put him on iron and did a colonoscopy the next >day. He has a port wine stain around his ear, so she wanted to rule out one in >his colon. His colon looked pretty good. There were glands that looked >swollen, but no eosinophils. She still felt that he has eosinophilic colitis, >but that it is " partially treated " . I should also note that Philip has always >been 90% in weight, so she doesn't think he has any problems with his small >intestine. She also put me on pancreatic enzymes to help me digest protein. No >matter what I eliminate, he still seems to be the same. I do know how to make >it worse. Beans and chicken seem to be bad. I'm trying to eat less protein, >but it isn't helping much. I still see some blood in every diaper. >The doctor's recommendation was for me to wean Philip and put him on Neocate. >We last saw the doctor 6 wks ago. His eosinophils were still 9, but he is no >longer anemic, but has low iron stores (I think that's normal for his age.) At >that time the doctor really really wanted me to wean him, but we were leaving on >a trip in mid February, so she said to do it when we returned. Well we've been >trying to get him to take a bottle. He doesn't have a clue and he is only >slightly better with a sippy cup. The most that I've gotten into him is an >ounce. I was so thrilled to be able to finally breastfed a baby, and it was >going so well. The doctor thinks the only thing to do is make him go cold >turkey and starve him into accepting the Neocate. We have also started him on >rice cereal, as he was showing an interest in food. This may complicate things, >but I would think he would be a lot worse if he were reacting to rice. Actually >he doesn't seem to like the rice cereal much. It's pretty bad. > >-Penny > > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0% >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! >http://click.egroups.com/1/937/4/_/474479/_/952629170/ >------------------------------------------------------------------------ > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2000 Report Share Posted March 10, 2000 Hi Penny - I am the mom to Caton, 13 mnths, who has not yet been diagnosed with anything yet (we have more tests later this month), but can't tolerate almost all foods. The only foods we know that he tolerates are bananas, sweet potatoes, and Alimentum. Like your Philip, his weight gain is great - he's 23 lbs - so getting a dr. to take his food issues seriously has been difficult. Wow, I sympathize with your dilemma in breastfeeding, that must be hard. Personally I don't know what I would do if in your situation, but my instict says that your breastmilk has to be better than anything manufactured. Have you tried contacting La Leche League and asking if they have any info for you, or have any experts you could contact? There is also a world-reknown breastfeeding expert in Toronto, Canada, Dr. Jack Newman, who may have ideas for you. I have corresponded with him via email several times and he is really wonderful - extremely responsive and really, he is considered the world expert on breastfeeding. If you do a web search, you will probably come up with a site that has an email link for him. If you can't find it, let me know, I can get his email address for you. The GI was pushing me to get Caton going on solids at a pretty early age (a little less than 4 months old) and he flatly refused. In fact, he really had no interest in solids at all, and wouldn't eat more than a few spoonfuls at a time until he was past 7 months old. You know, these kids are so smart, I think they instinctively know what's good and bad for them and let us know in no uncertain terms! So I guess I'm not surprised your Philip is rejecting the cereal. Have you also tried other high-quality solids, like bananas, avocado, sweet potatoes, squash? He may prefer things with a little more flavor. Just some thoughts for you, I know it's hard with little ones, don't you wish they could tell you what's wrong? It's frustrating. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2000 Report Share Posted March 10, 2000 Wow, what a great idea. I contacted Dr. Newman, and guess what, an e-mail was waiting for me this morning! What a terrific Dr. Doesn't it make you wonder, when these experts are easier to contact than your own family doctor! He gave me some things to try. Do you know of any good web links on introducing table food to breastfed babies? -Penny Fuller wrote: > > > Hi Penny - > > I am the mom to Caton, 13 mnths, who has not yet been diagnosed with > anything yet (we have more tests later this month), but can't tolerate > almost all foods. The only foods we know that he tolerates are bananas, > sweet potatoes, and Alimentum. Like your Philip, his weight gain is > great - he's 23 lbs - so getting a dr. to take his food issues seriously > has been difficult. > > Wow, I sympathize with your dilemma in breastfeeding, that must be hard. > Personally I don't know what I would do if in your situation, but my > instict says that your breastmilk has to be better than anything > manufactured. Have you tried contacting La Leche League and asking if > they have any info for you, or have any experts you could contact? > There is also a world-reknown breastfeeding expert in Toronto, Canada, > Dr. Jack Newman, who may have ideas for you. I have corresponded with > him via email several times and he is really wonderful - extremely > responsive and really, he is considered the world expert on > breastfeeding. If you do a web search, you will probably come up with a > site that has an email link for him. If you can't find it, let me know, > I can get his email address for you. > > The GI was pushing me to get Caton going on solids at a pretty early age > (a little less than 4 months old) and he flatly refused. In fact, he > really had no interest in solids at all, and wouldn't eat more than a > few spoonfuls at a time until he was past 7 months old. You know, these > kids are so smart, I think they instinctively know what's good and bad > for them and let us know in no uncertain terms! So I guess I'm not > surprised your Philip is rejecting the cereal. Have you also tried > other high-quality solids, like bananas, avocado, sweet potatoes, > squash? He may prefer things with a little more flavor. > > Just some thoughts for you, I know it's hard with little ones, don't you > wish they could tell you what's wrong? It's frustrating. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2000 Report Share Posted March 10, 2000 No, she didn't find any eos in the biopsies of his colon, but she is sticking to her diagnosis of EC. He has no signs of allergy other than the high blood eos, and the bloody, mucusy, green poop. So, could you have high blood eos, and have no symptoms at all? i thought that allergy is what causes the eosinophil level to be high. What is the difference between EC, allergic colitis, and crohnins? -Penny, bewildered and confused mom to philip 6.5 months, and andrew 4 yrs. Steph wrote: > > > penny- > > First of all, welcome. > > A copule of things come to mind. First, you don't say anything here about > eosinophils actually being found in the colon? or on biopsies? That is the > only definitive way to diagnose GI eosinophilic diseaes. Secondly, there is > no proven correlation between peripheral (blood) eosinophilic levels and > eosinophilic enteropathies. One can have huge elevations of eos in the > blood and have none in the GI tract and visa-versa. Another thought is that > if his weight is at 90%, something is obviously working REALLY WELL. does > anyone else on the list have a kid diagnosed with eos disease whose weight > was this good? > > if in fact, your son does have some form of eosinophilic enteropathy, the > docs are right in suggesting Neocate, or one of the amino-acid based > formulas. Your son is young enough that it would be worth trying to " force " > the issue a bit and see if you can get him to take it. If not, and he does > in fact have one of the forms of GI eos disease, he could end up having a > tube for the formula and you don't want that if you can avoid it. Most of > our kids were diagnosed later and the tubes became a necessity for them. > > I hope they come up with some answers for you. It sounds like there are a > LOT of questions still unanswered. ONe has to wonder if you are dealing > with some food sensitivities or allergies and not with eos disease at all. > Time will certainly tell as the biopsies will show eos eventually if he does > in fact have eos disease. > > Good luck and again, welcome. > > Steph. > > [eosinophilic gastroenteritis] intro > > > > > > >Hi, > >My name is Penny. I'm a mom to age 4, and Philip age 6.5 months. > > was born with a cleft palate. We had a terrible time feeding him, > but > >finally learned about the Haberman feeder. He had formula and breastmilk > via > >this bottle. I pumped for six months, but gave up when my " output " fell to > less > >that 4oz a day. He was fine on the formula, but developed lactose > intolerance. > >He also had a mystery food allergy for about a year which gave him hives. > He > >had surgery for the cleft at 11 months, and now is " only " allergic to cats > and > >mold. > >My baby, Philip, developed green poop at 5.5 wks of age. He was > exclusively > >breastfed. I looked it up in various baby books, but all said that it was > >normal, or didn't say anything at all. I even forgot to say something at > >Philip's 2 month checkup. After we got home that day, I noticed some > blood in > >his poop, so I called the doctor. He told me to go off milk. I did, but > after > >2 wks, there was no improvement. So the doctor ordered stool cultures and > blood > >tests. The stool tests revealed blood (duh!) and the blood tests showed > that > >he was slightly anemic and had an eosinophils level at 13. (13 percent?) > >anyway the doctor said that it was the highest that he had seen in a child > under > >2. He said to give it some more time. When he was three months, on my own > I > >went off soy, peanuts, fish, shellfish (never ate it anyway) and corn. > Then a > >week later I went off wheat, eggs, nuts, citrus, and tomato. For a while I > went > >off potato, but that left me with not much to eat when we are out and > about. > >After Christmas, when Philip was 4 months old, we went to see a pediatric > >gastroenterologist. Blood tests revealed that he had eosinophils at 9, and > was > >only borderline anemic. She put him on iron and did a colonoscopy the next > >day. He has a port wine stain around his ear, so she wanted to rule out > one in > >his colon. His colon looked pretty good. There were glands that looked > >swollen, but no eosinophils. She still felt that he has eosinophilic > colitis, > >but that it is " partially treated " . I should also note that Philip has > always > >been 90% in weight, so she doesn't think he has any problems with his small > >intestine. She also put me on pancreatic enzymes to help me digest > protein. No > >matter what I eliminate, he still seems to be the same. I do know how to > make > >it worse. Beans and chicken seem to be bad. I'm trying to eat less > protein, > >but it isn't helping much. I still see some blood in every diaper. > >The doctor's recommendation was for me to wean Philip and put him on > Neocate. > >We last saw the doctor 6 wks ago. His eosinophils were still 9, but he is > no > >longer anemic, but has low iron stores (I think that's normal for his age.) > At > >that time the doctor really really wanted me to wean him, but we were > leaving on > >a trip in mid February, so she said to do it when we returned. Well we've > been > >trying to get him to take a bottle. He doesn't have a clue and he is only > >slightly better with a sippy cup. The most that I've gotten into him is an > >ounce. I was so thrilled to be able to finally breastfed a baby, and it > was > >going so well. The doctor thinks the only thing to do is make him go cold > >turkey and starve him into accepting the Neocate. We have also started him > on > >rice cereal, as he was showing an interest in food. This may complicate > things, > >but I would think he would be a lot worse if he were reacting to rice. > Actually > >he doesn't seem to like the rice cereal much. It's pretty bad. > > > >-Penny > > > > > >------------------------------------------------------------------------ > >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0% > >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! > >http://click.egroups.com/1/937/4/_/474479/_/952629170/ > >------------------------------------------------------------------------ > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2000 Report Share Posted March 10, 2000 No, she didn't find any eos in the biopsies of his colon, but she is sticking to her diagnosis of EC. He has no signs of allergy other than the high blood eos, and the bloody, mucusy, green poop. So, could you have high blood eos, and have no symptoms at all? i thought that allergy is what causes the eosinophil level to be high. What is the difference between EC, allergic colitis, and crohnins? -Penny, bewildered and confused mom to philip 6.5 months, and andrew 4 yrs. Steph wrote: > > > penny- > > First of all, welcome. > > A copule of things come to mind. First, you don't say anything here about > eosinophils actually being found in the colon? or on biopsies? That is the > only definitive way to diagnose GI eosinophilic diseaes. Secondly, there is > no proven correlation between peripheral (blood) eosinophilic levels and > eosinophilic enteropathies. One can have huge elevations of eos in the > blood and have none in the GI tract and visa-versa. Another thought is that > if his weight is at 90%, something is obviously working REALLY WELL. does > anyone else on the list have a kid diagnosed with eos disease whose weight > was this good? > > if in fact, your son does have some form of eosinophilic enteropathy, the > docs are right in suggesting Neocate, or one of the amino-acid based > formulas. Your son is young enough that it would be worth trying to " force " > the issue a bit and see if you can get him to take it. If not, and he does > in fact have one of the forms of GI eos disease, he could end up having a > tube for the formula and you don't want that if you can avoid it. Most of > our kids were diagnosed later and the tubes became a necessity for them. > > I hope they come up with some answers for you. It sounds like there are a > LOT of questions still unanswered. ONe has to wonder if you are dealing > with some food sensitivities or allergies and not with eos disease at all. > Time will certainly tell as the biopsies will show eos eventually if he does > in fact have eos disease. > > Good luck and again, welcome. > > Steph. > > [eosinophilic gastroenteritis] intro > > > > > > >Hi, > >My name is Penny. I'm a mom to age 4, and Philip age 6.5 months. > > was born with a cleft palate. We had a terrible time feeding him, > but > >finally learned about the Haberman feeder. He had formula and breastmilk > via > >this bottle. I pumped for six months, but gave up when my " output " fell to > less > >that 4oz a day. He was fine on the formula, but developed lactose > intolerance. > >He also had a mystery food allergy for about a year which gave him hives. > He > >had surgery for the cleft at 11 months, and now is " only " allergic to cats > and > >mold. > >My baby, Philip, developed green poop at 5.5 wks of age. He was > exclusively > >breastfed. I looked it up in various baby books, but all said that it was > >normal, or didn't say anything at all. I even forgot to say something at > >Philip's 2 month checkup. After we got home that day, I noticed some > blood in > >his poop, so I called the doctor. He told me to go off milk. I did, but > after > >2 wks, there was no improvement. So the doctor ordered stool cultures and > blood > >tests. The stool tests revealed blood (duh!) and the blood tests showed > that > >he was slightly anemic and had an eosinophils level at 13. (13 percent?) > >anyway the doctor said that it was the highest that he had seen in a child > under > >2. He said to give it some more time. When he was three months, on my own > I > >went off soy, peanuts, fish, shellfish (never ate it anyway) and corn. > Then a > >week later I went off wheat, eggs, nuts, citrus, and tomato. For a while I > went > >off potato, but that left me with not much to eat when we are out and > about. > >After Christmas, when Philip was 4 months old, we went to see a pediatric > >gastroenterologist. Blood tests revealed that he had eosinophils at 9, and > was > >only borderline anemic. She put him on iron and did a colonoscopy the next > >day. He has a port wine stain around his ear, so she wanted to rule out > one in > >his colon. His colon looked pretty good. There were glands that looked > >swollen, but no eosinophils. She still felt that he has eosinophilic > colitis, > >but that it is " partially treated " . I should also note that Philip has > always > >been 90% in weight, so she doesn't think he has any problems with his small > >intestine. She also put me on pancreatic enzymes to help me digest > protein. No > >matter what I eliminate, he still seems to be the same. I do know how to > make > >it worse. Beans and chicken seem to be bad. I'm trying to eat less > protein, > >but it isn't helping much. I still see some blood in every diaper. > >The doctor's recommendation was for me to wean Philip and put him on > Neocate. > >We last saw the doctor 6 wks ago. His eosinophils were still 9, but he is > no > >longer anemic, but has low iron stores (I think that's normal for his age.) > At > >that time the doctor really really wanted me to wean him, but we were > leaving on > >a trip in mid February, so she said to do it when we returned. Well we've > been > >trying to get him to take a bottle. He doesn't have a clue and he is only > >slightly better with a sippy cup. The most that I've gotten into him is an > >ounce. I was so thrilled to be able to finally breastfed a baby, and it > was > >going so well. The doctor thinks the only thing to do is make him go cold > >turkey and starve him into accepting the Neocate. We have also started him > on > >rice cereal, as he was showing an interest in food. This may complicate > things, > >but I would think he would be a lot worse if he were reacting to rice. > Actually > >he doesn't seem to like the rice cereal much. It's pretty bad. > > > >-Penny > > > > > >------------------------------------------------------------------------ > >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0% > >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! > >http://click.egroups.com/1/937/4/_/474479/_/952629170/ > >------------------------------------------------------------------------ > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2000 Report Share Posted March 10, 2000 No, she didn't find any eos in the biopsies of his colon, but she is sticking to her diagnosis of EC. He has no signs of allergy other than the high blood eos, and the bloody, mucusy, green poop. So, could you have high blood eos, and have no symptoms at all? i thought that allergy is what causes the eosinophil level to be high. What is the difference between EC, allergic colitis, and crohnins? -Penny, bewildered and confused mom to philip 6.5 months, and andrew 4 yrs. Steph wrote: > > > penny- > > First of all, welcome. > > A copule of things come to mind. First, you don't say anything here about > eosinophils actually being found in the colon? or on biopsies? That is the > only definitive way to diagnose GI eosinophilic diseaes. Secondly, there is > no proven correlation between peripheral (blood) eosinophilic levels and > eosinophilic enteropathies. One can have huge elevations of eos in the > blood and have none in the GI tract and visa-versa. Another thought is that > if his weight is at 90%, something is obviously working REALLY WELL. does > anyone else on the list have a kid diagnosed with eos disease whose weight > was this good? > > if in fact, your son does have some form of eosinophilic enteropathy, the > docs are right in suggesting Neocate, or one of the amino-acid based > formulas. Your son is young enough that it would be worth trying to " force " > the issue a bit and see if you can get him to take it. If not, and he does > in fact have one of the forms of GI eos disease, he could end up having a > tube for the formula and you don't want that if you can avoid it. Most of > our kids were diagnosed later and the tubes became a necessity for them. > > I hope they come up with some answers for you. It sounds like there are a > LOT of questions still unanswered. ONe has to wonder if you are dealing > with some food sensitivities or allergies and not with eos disease at all. > Time will certainly tell as the biopsies will show eos eventually if he does > in fact have eos disease. > > Good luck and again, welcome. > > Steph. > > [eosinophilic gastroenteritis] intro > > > > > > >Hi, > >My name is Penny. I'm a mom to age 4, and Philip age 6.5 months. > > was born with a cleft palate. We had a terrible time feeding him, > but > >finally learned about the Haberman feeder. He had formula and breastmilk > via > >this bottle. I pumped for six months, but gave up when my " output " fell to > less > >that 4oz a day. He was fine on the formula, but developed lactose > intolerance. > >He also had a mystery food allergy for about a year which gave him hives. > He > >had surgery for the cleft at 11 months, and now is " only " allergic to cats > and > >mold. > >My baby, Philip, developed green poop at 5.5 wks of age. He was > exclusively > >breastfed. I looked it up in various baby books, but all said that it was > >normal, or didn't say anything at all. I even forgot to say something at > >Philip's 2 month checkup. After we got home that day, I noticed some > blood in > >his poop, so I called the doctor. He told me to go off milk. I did, but > after > >2 wks, there was no improvement. So the doctor ordered stool cultures and > blood > >tests. The stool tests revealed blood (duh!) and the blood tests showed > that > >he was slightly anemic and had an eosinophils level at 13. (13 percent?) > >anyway the doctor said that it was the highest that he had seen in a child > under > >2. He said to give it some more time. When he was three months, on my own > I > >went off soy, peanuts, fish, shellfish (never ate it anyway) and corn. > Then a > >week later I went off wheat, eggs, nuts, citrus, and tomato. For a while I > went > >off potato, but that left me with not much to eat when we are out and > about. > >After Christmas, when Philip was 4 months old, we went to see a pediatric > >gastroenterologist. Blood tests revealed that he had eosinophils at 9, and > was > >only borderline anemic. She put him on iron and did a colonoscopy the next > >day. He has a port wine stain around his ear, so she wanted to rule out > one in > >his colon. His colon looked pretty good. There were glands that looked > >swollen, but no eosinophils. She still felt that he has eosinophilic > colitis, > >but that it is " partially treated " . I should also note that Philip has > always > >been 90% in weight, so she doesn't think he has any problems with his small > >intestine. She also put me on pancreatic enzymes to help me digest > protein. No > >matter what I eliminate, he still seems to be the same. I do know how to > make > >it worse. Beans and chicken seem to be bad. I'm trying to eat less > protein, > >but it isn't helping much. I still see some blood in every diaper. > >The doctor's recommendation was for me to wean Philip and put him on > Neocate. > >We last saw the doctor 6 wks ago. His eosinophils were still 9, but he is > no > >longer anemic, but has low iron stores (I think that's normal for his age.) > At > >that time the doctor really really wanted me to wean him, but we were > leaving on > >a trip in mid February, so she said to do it when we returned. Well we've > been > >trying to get him to take a bottle. He doesn't have a clue and he is only > >slightly better with a sippy cup. The most that I've gotten into him is an > >ounce. I was so thrilled to be able to finally breastfed a baby, and it > was > >going so well. The doctor thinks the only thing to do is make him go cold > >turkey and starve him into accepting the Neocate. We have also started him > on > >rice cereal, as he was showing an interest in food. This may complicate > things, > >but I would think he would be a lot worse if he were reacting to rice. > Actually > >he doesn't seem to like the rice cereal much. It's pretty bad. > > > >-Penny > > > > > >------------------------------------------------------------------------ > >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0% > >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! > >http://click.egroups.com/1/937/4/_/474479/_/952629170/ > >------------------------------------------------------------------------ > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2000 Report Share Posted March 10, 2000 Penny- When AJ was 5 months old and I tried to start food, I THOUGHT AJ was begining to reject the breast. I thought it was something I was eating. I thought all kinds of things. I stressed myself out so much because here I am nursing and AJ was dropping ounces by the day. What guilt. It's the old-if I only knew then what I know now. I did nurse her for 11 months, but wished I never stopped. At least not until we had a diagnosis. AJ was super stubborn and NEVER took a bottle. She would drink from a sippy cup at 4 months of age. I would give her something other than breast milk in it. Neocate is one hard taste to get used to, so it might be a tough transition. When is fully on it though, he will be getting everything he needs. AJ's height and weight shot up after being on it. There is another mom on the list, Shana, who is still nursing her 2 1/2 year old. It is the only thing saving him. Some suggestions though-I would see if you could find a pediatric allergist who will test . It was quite a challange and couldn't find one until AJ was 9 months old. Eventually AJ tested postive to 44 food allergies. But you are playing such a wild guessing game right now. Also, some people don't even give their baby's food until 6 months. He isn't losing weight, so I wouldn't be as concerned with food. This is all my opinion of course and how looking back, I would have done things differently. Good luck. Phyllis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2000 Report Share Posted March 10, 2000 Hi Penny, The difference between Crohn's, Allergic Colitis and EC is indistinguishable based on symptoms alone, since all 3 can mimic one another. However, there are certain features typically identifiable by bowel biopsy that can help distinguish between them: Crohn's is what I'm most familiar with, since I have it myself. It is basically an inflammatory bowel disease that can affect any or all layers of the digestive system wall (mucosa through to serosa) and can occur anywhere from mouth to anus. White blood cell infiltrates (mostly polys, or neutrophils) are common. Areas of inflammation are patchy - often there are areas of diseased bowel inter-mixed with areas of healthy bowel. Most common locations for Crohn's inflammation are rectal, terminal ileum, and ascending colon. I'm not entirely certain about the difference between EC and Allergic Colitis, but if I had to take an educated guess, I'd say that Allergic Colitis was colitis caused by an allergen (or multiple allergens) in which the lesions and inflammation only affect the mucosa (and possibly sub-mucosa) layer of the large bowel (which does not necessarily imply eosinophilic infiltration). Colitis inflammation is typically continuous; eosinophilic inflammation is typically more patchy in nature. EC is eosinophilic infiltration of any one or more layers of the large bowel, and there is not necessarily an identifiable causative food allergen (i.e., skin tests may not corelate well with symptom observation on food challenge). For more information: http://home.beseen.com/community/razzle00/cdlinks.htm http://home.beseen.com/community/razzle00/eg.htm http://www.healingwell.com/ibd/ I hope this helps... Take care, -Joy ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2000 Report Share Posted March 10, 2000 Hi Penny, I don't have any Web sites about adding solid food for breast fed babies. I do have some experience. I nursed my oldest daughter for 20 months. I didn't give her solids until 11 months. I had planned to start at ten months, but my husband was in the military and we made a major move. When I did start solids, we did use the baby cereals, But for most everything else crushed table food. I think we started with bananas that we mashed up. We added pure foods first and eventually mixtures. I might add that she didn't get her first tooth until she was 13 months but could really gum things to death. Good luck Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2000 Report Share Posted March 11, 2000 > Wow, what a great idea. I contacted Dr. Newman, and guess what, an e-mail > was waiting for me this morning! What a terrific Dr. Doesn't it make you > wonder, when these experts are easier to contact than your own family > doctor! He gave me some things to try. Oh, I'm so glad, Penny! Yes, he is AMAZING, and that is an understatement, IMO. He has been a wonderful help to me and many other women I know. > Do you know of any good web links on introducing table food to breastfed > babies? Can you clarify - do you mean solids in general, as in pureed baby foods, or table foods - gently mushed stuff that you (the parent) are eating? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2002 Report Share Posted March 22, 2002 Noreen, I'm sure others on this list will tell you that depression is a part of the illness and that most MSA patients are on meds for depression. Is your mother being cared for by neurologist familiar with MSA? Jerry Cash intro Hello, I'm a new member to this site. My mom was diagnosed with shy- drager last Spring and she most likely has had it for 3 years. She is only 60 years old. She is just really starting to learn what her future may be like and she is very depressed. She had already suffered from depression throughout her life and this diagnosis has hit her very hard. As her adult daughter I am very concerned about her and want to be as supportive as I can. I live 2 hours away from her and am only able to visit once a month but we speak by phone regularly. Can anyone who has a parent with shy-drager share their experiences as an adult child? Any helpful suggestions would be appreciated. I am also trying to find out about support groups for my mother and father to attend in the Central Massachusetts area. I'd also like to find a support group for family members in Central Connecticut. Thank you much,Noreen 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 March 22, 2002 Report Share Posted March 22, 2002 Noreen, I'm sure others on this list will tell you that depression is a part of the illness and that most MSA patients are on meds for depression. Is your mother being cared for by neurologist familiar with MSA? Jerry Cash intro Hello, I'm a new member to this site. My mom was diagnosed with shy- drager last Spring and she most likely has had it for 3 years. She is only 60 years old. She is just really starting to learn what her future may be like and she is very depressed. She had already suffered from depression throughout her life and this diagnosis has hit her very hard. As her adult daughter I am very concerned about her and want to be as supportive as I can. I live 2 hours away from her and am only able to visit once a month but we speak by phone regularly. Can anyone who has a parent with shy-drager share their experiences as an adult child? Any helpful suggestions would be appreciated. I am also trying to find out about support groups for my mother and father to attend in the Central Massachusetts area. I'd also like to find a support group for family members in Central Connecticut. Thank you much,Noreen 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 March 22, 2002 Report Share Posted March 22, 2002 Hi, Noreen. Welcome, though I am sorry you are here. My mother Joyce Scaduto (71, died 11/5/00 of complications) had MSA. She lived in NY and I live in Mass. (my sister is in Conn.). My main role in my mother's disease was to gather information. I tried to attend doctor visits with her, but this became more and more difficult (my sister was often able to go, though). When she got bad--bed and wheelchair bound--the most important thing was just to be with her. This was not easy, but we tried (even if it meant staying only overnight). When I was unable to come for a stretch, I would make a video of my kids (the kind only a grandparent could love) and send that. I had two young kids at the time, and a dog (love of my life) dying of cancer. Heading for NY was not easy. I wish I had done it more. As for the depression, my mom, who was never depressed in her life, was on Zoloft and felt that it helped in some way. There is a group that meets in Lexington. Their meetings are posted on this list. Where are your parents in Central Mass? I am in W. Townsend. I know you don't know me, but perhaps I can help in some way. Staying with this list is important. You will learn a lot. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2002 Report Share Posted March 23, 2002 Dear Noreen, Welcome to the group. I am also the adult child of a parent with MSA. My dad has been afflicted for probably more than ten years at this point (although he received his diagnosis in 1998). You asked for suggestions on how to help. I have tried to give my parents information that I get from this group. Through this group we learned of a local support group that my mom attends. I try to pass on the emails that seem relevant to their situation, and I always pass on the jokes! I have learned to not nag too much, to investigate equipment options, and try to just be supportive. It is hard and frustrating to be away so I hope that my participation this way helps them. Most of the time it feels like way too little, but I don't know what else to do. Good luck to you and your mom. I know you will learn a lot here. Cindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2002 Report Share Posted March 23, 2002 Dear Noreen, Welcome to the group. I am also the adult child of a parent with MSA. My dad has been afflicted for probably more than ten years at this point (although he received his diagnosis in 1998). You asked for suggestions on how to help. I have tried to give my parents information that I get from this group. Through this group we learned of a local support group that my mom attends. I try to pass on the emails that seem relevant to their situation, and I always pass on the jokes! I have learned to not nag too much, to investigate equipment options, and try to just be supportive. It is hard and frustrating to be away so I hope that my participation this way helps them. Most of the time it feels like way too little, but I don't know what else to do. Good luck to you and your mom. I know you will learn a lot here. Cindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2002 Report Share Posted March 23, 2002 Dear Noreen, Welcome to the group. I am also the adult child of a parent with MSA. My dad has been afflicted for probably more than ten years at this point (although he received his diagnosis in 1998). You asked for suggestions on how to help. I have tried to give my parents information that I get from this group. Through this group we learned of a local support group that my mom attends. I try to pass on the emails that seem relevant to their situation, and I always pass on the jokes! I have learned to not nag too much, to investigate equipment options, and try to just be supportive. It is hard and frustrating to be away so I hope that my participation this way helps them. Most of the time it feels like way too little, but I don't know what else to do. Good luck to you and your mom. I know you will learn a lot here. Cindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2002 Report Share Posted March 23, 2002 Noreen, Hello and welcome to the group. My husband Rob (dx SDS/MSA 3/98) and I live in Lexington, MA. There is a support group that meets here in Lexington every couple of months. You can see the notes fro the last couple of meeting under the " files " section of the main Yahoo Shy- Drager page - look under US Support groups. If at all possible, I suggest that you and your mother attned tha national meeting that will be help May 3-5 in Boston. It will be very informative and a good chance to meet others with MSA. You can check out this site for more info: www.shy-drager.com . Carol & Rob > Hello, > I'm a new member to this site. My mom was diagnosed with shy- > drager last Spring and she most likely has had it for 3 years. She is > only 60 years old. She is just really starting to learn what her > future may be like and she is very depressed. She had already > suffered from depression throughout her life and this diagnosis has > hit her very hard. As her adult daughter I am very concerned about > her and want to be as supportive as I can. I live 2 hours away from > her and am only able to visit once a month but we speak by phone > regularly. > Can anyone who has a parent with shy-drager share their > experiences as an adult child? Any helpful suggestions would be > appreciated. I am also trying to find out about support groups for > my mother and father to attend in the Central Massachusetts area. > I'd also like to find a support group for family members in Central > Connecticut. > Thank you much,Noreen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2002 Report Share Posted March 23, 2002 Noreen, Hello and welcome to the group. My husband Rob (dx SDS/MSA 3/98) and I live in Lexington, MA. There is a support group that meets here in Lexington every couple of months. You can see the notes fro the last couple of meeting under the " files " section of the main Yahoo Shy- Drager page - look under US Support groups. If at all possible, I suggest that you and your mother attned tha national meeting that will be help May 3-5 in Boston. It will be very informative and a good chance to meet others with MSA. You can check out this site for more info: www.shy-drager.com . Carol & Rob > Hello, > I'm a new member to this site. My mom was diagnosed with shy- > drager last Spring and she most likely has had it for 3 years. She is > only 60 years old. She is just really starting to learn what her > future may be like and she is very depressed. She had already > suffered from depression throughout her life and this diagnosis has > hit her very hard. As her adult daughter I am very concerned about > her and want to be as supportive as I can. I live 2 hours away from > her and am only able to visit once a month but we speak by phone > regularly. > Can anyone who has a parent with shy-drager share their > experiences as an adult child? Any helpful suggestions would be > appreciated. I am also trying to find out about support groups for > my mother and father to attend in the Central Massachusetts area. > I'd also like to find a support group for family members in Central > Connecticut. > Thank you much,Noreen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2002 Report Share Posted March 23, 2002 Noreen, Hello and welcome to the group. My husband Rob (dx SDS/MSA 3/98) and I live in Lexington, MA. There is a support group that meets here in Lexington every couple of months. You can see the notes fro the last couple of meeting under the " files " section of the main Yahoo Shy- Drager page - look under US Support groups. If at all possible, I suggest that you and your mother attned tha national meeting that will be help May 3-5 in Boston. It will be very informative and a good chance to meet others with MSA. You can check out this site for more info: www.shy-drager.com . Carol & Rob > Hello, > I'm a new member to this site. My mom was diagnosed with shy- > drager last Spring and she most likely has had it for 3 years. She is > only 60 years old. She is just really starting to learn what her > future may be like and she is very depressed. She had already > suffered from depression throughout her life and this diagnosis has > hit her very hard. As her adult daughter I am very concerned about > her and want to be as supportive as I can. I live 2 hours away from > her and am only able to visit once a month but we speak by phone > regularly. > Can anyone who has a parent with shy-drager share their > experiences as an adult child? Any helpful suggestions would be > appreciated. I am also trying to find out about support groups for > my mother and father to attend in the Central Massachusetts area. > I'd also like to find a support group for family members in Central > Connecticut. > Thank you much,Noreen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2002 Report Share Posted April 29, 2002 Hi , there are several moms with half a dozen kids on the list, so you won't feel alone :-)) The timing for the dx is really bad (if there is a good time for the dx at all), so I keep my fingers crossed that your baby to be won't have CF too. As for anything else, you've said it already, it's a lot to get used too. Feel free to ask any questions as they arise. I have two questions, how old is your child with CF and how is the weather on Hawaii? Peace Torsten, dad of Fiona 5wcf > Hi, My name is I have 5 children and one on the way and > recently found out my youngest has CF. We just started all the > ultrase, and adek, Alot to get use too. At first I was very upset > that my daughter has cf now I'm trying to move on and get things > started so she gains weight and gets healthier. Thanks Quote Link to comment Share on other sites More sharing options...
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