Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 In a message dated 11/29/00 2:10:20 PM Eastern Standard Time, sldavis@... writes: << Once, it came back negative but you know how a mom has that instinct that maybe it didn't get done right. It came back negative but he was also on 4cc of a vary strong steroid. The allergy test he took at the same time also came back negative and since we found he has a very serious allergy to milk. SO, I don't know what to believe. >> Based on my understanding (and we have certainly read up on it a bit, b/c of Mallory's initial neg. sweat test), steriods do NOT effect the sweat test, though they do affect allergy testing. That is b/c they suppress the inflammatory response. My understanding is that the only thing that may effect the sweat test, is not getting enough sweat, or edema if it is severe enough...... there are some mutations, however, of the CF gene that are associated with neg. sweat tests. How about asking for the genzyme 90+ allele test for cf mutations? Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 Dear , I would push as far as needed to get the test done. My little guy, had the projectile vomitting when he was an infant, and around 3 months of age he started with a cough, that just got progressively worse. The first ped said to start him on jar food, because he wasnt growing, then he was diagnosed with failure to thrive, this was after we changed peds. When he was 4 1/2 months old, he was finally sweat tested, and although the test was positive, and heartbreaking to hear, we finally had an answer to all the things going on with him, is now 16 months old, and very healthy, he weighs about 26 pounds, and gets his treatments 2-3 times a day, but he is doing wonderful now that he is diagnosed and we have something to work with. Hope all works out with your little boy, and hope all is well soon. , mommy of 4, , 15 with a much older mind, Caleb, 6 and a kindergarten pro, finally, , 4 1/2 and the next famous artist, and , 15months with CF and reflux and a beautiful smile and bright blue eyes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 Dear , I would push as far as needed to get the test done. My little guy, had the projectile vomitting when he was an infant, and around 3 months of age he started with a cough, that just got progressively worse. The first ped said to start him on jar food, because he wasnt growing, then he was diagnosed with failure to thrive, this was after we changed peds. When he was 4 1/2 months old, he was finally sweat tested, and although the test was positive, and heartbreaking to hear, we finally had an answer to all the things going on with him, is now 16 months old, and very healthy, he weighs about 26 pounds, and gets his treatments 2-3 times a day, but he is doing wonderful now that he is diagnosed and we have something to work with. Hope all works out with your little boy, and hope all is well soon. , mommy of 4, , 15 with a much older mind, Caleb, 6 and a kindergarten pro, finally, , 4 1/2 and the next famous artist, and , 15months with CF and reflux and a beautiful smile and bright blue eyes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 Hello , A very good friend of mine lives in the Houston area, he is 37 with cf. He subscribes to Cystic-L, would you mind if I gave him your email address, maybe he can be of help as to who you could contact at the Texas Childrens Hospital. , mommy of 4, , 15 with a much older mind, Caleb, 6 and a kindergarten pro, finally, , 4 1/2 and the next famous artist, and , 15months with CF and reflux and a beautiful smile and bright blue eyes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 Has your son ha a sweat test? Mandy > >Reply-To: cfparentsegroups >To: cfparentsegroups >Subject: Worried about CF >Date: Wed, 29 Nov 2000 17:20:23 -0000 > >Hello, I am a new parent that is constantly being asked to have her >child for CF. However, no one thinks he has it. He is two years old >and has a lot of lung problems and digestive problems. He has GERD and >a lot of allergies. He is constantly getting this nagging cough but >has not cold or drainage. He just coughs until he throws up. SOmetimes >he throws up phelgm and sometimes it is just clear liquid. He has a >lot of rattling in his chest. SOmetimes you can hear it from the >other side to the room. He has only actually been tested once but was >on a steroid. THe steroid keeps his intestines from being inflammed >and controls the vomiting. Can a person have CF and not taste or smell >salty? My doctor questioned me again yesterday about having him >tested. I have previously typed out a letter explaining his problems. >I am sorry to bore yall, but could you please read it and give any >suggestions or advice or opinions. Thanks ahead of time. > ><Hello! I am a mother of two children. Corley is four and >Caleb will be 2 in March 2001. Corley was a very sick child when he >was >born. He had refleux but outgrew it when he turned a year old. He has >been >pretty well since he was 18 months old. ( I took out of daycare and >put >him in home daycare) Now, when caleb came along, he has been sick >since >the first time they put him in my arms. I thought the first year that >he >had what my first child had and he would outgrow it after he was a >year >old. Boy, was I ever wrong. It got ten times worse. My peditrician at >the >time basically told me she did not know what was wrong. He had a >constant >rattle in his chest and uncontrolable vomiting-projectile!. We then >started >taking him to a pulmoniologist (excuse my spelling) to check him out. >She >ran all kinds of test. We started out with allergy testing and moved >all >the way to cystic fiborsis (he does not have). The first allergy >testing >was through the skin. Everything came back negative. & nbsp; & nbsp; The >doctor >had already put him on a steroid, prelone. It started working. However >every time we tried to ween him off of it, the rattleing and throwing >up >started up again. They could not figure out why the steroid was >stopping >the vomiting. She also had several test ran to check out his insides. >There >was no indication of hernias, blockage or anything. The only thing >they >found was that he had delayed gastric emptying. His food was taking >three >times as long to digest than normal. Then, the doctor did an allergy >test >by drawing blood. They discovered he was highly allergic to Milk, and >slightly >allergic to wheat, soy and peanuts. Remember, the whole time he was >still >on the steroid. They are assuming this is why it did not show up the >first >time. We then moved on to a gasterologist. I was not satisfied with >the >first so I got a second opinion. Both doctors had tried to move him >off >the steroid. Again-everytime, the vomiting started again. They ran the >test again on his digestive problem. It was still happening. They also >did a biopsy of his intestins. Both times, his intestines were severly >inflammed. & nbsp; All they wanted was him to stay on the steroid. The >steroid >does help. However, what is it doing to him? There are a lot of >side-effects. >It scares me.</font> ><br><font size=-2>My current doctor, from Houston, Texas, has him >still >on the steroid. He is diagnosed with the delayed gastric emptying and >severe >refleux along with all of the allergies I had mentioned before. He has >stated that he cannot do the refleux surgery because once that is >done, >he can no longer throw up again. Well, if the food is not digesting, >then >it sits there and can cause toxins to build up and could eventually be >very fatal. he also wants us to stay off the food allergies totally. >When >I did, the eceezma totally cleared up.</font> ><br><font size=-2> & nbsp; & nbsp; & nbsp; So now, we are on the steroid and >I am keeping him off the allergic foods. He has also put caleb on a >VERY >expensive formula-Neocate 1. This is to help him get the nutrients he >needs >since he throws up so much. & nbsp; His ecezma is also so much better. >My >concern is now what to do. I am concerned about celiac disease. He has >all the noticiable symptoms. There are some which he cant' tell me if >he >has or not, like painful joints and such. I can just tell by those I >see >by dealing with him everyday. I also got on the internet and looked up >delayed gastric emptying and found out that the number one cause of it >is diabetes. My doctor says don't worry about if he throws-up a little >each day, he's growing (very little, a pound every couple of months). >Yeah-but >no one or daycare wants to keep a child who throws up 2-3 times a >day. & nbsp; >He wants to keep him on the steroid for six more months, he's been on >it >since March 2000, an wait and see what happens. This scares me to >death. >Plus, he is very moody, irritable, urinates constantly, I can never >get >his thirst quenched, he sleeps ALL THE TIME (YES! this can get old) >and >he screams at times and puts our hands on his legs to massage, and I >don't >know the reasons for any of this. I want him tested, don't I? How far >should >I push?</font> ><br><font size=-2>If & nbsp; anyone has any suggestions, answers, PLEASE >let me know! If you think I am overreacting,,please tell me. At this >pint, >I am desperate and I want my child to feel better. Thanks for your >help >ahead of time.</font> ><br><font size=-2> </font> ><br><font size=-2>sldavis@...</font></html> > > > ________________________________________________________________________________\ _____ Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 yes! And thirsty and urniates all the time becasue of all of the fluid. Banks wrote: > STACY, > does he always seem to be hungry..... meaning... never satisfied? my son bryan ate ALL the time... he would have 2 to 3 bowls of cereal in the mornings... before we knew he had CF. we did not find out he had CF until he was almost 3. you need to check very soon to make sure he doesnt have it or does have it. it is a very serious disease and the quicker you know what is wrong, the better your son will be. i do not want to scare you but i have been where you are. for 3 years no doctors thought bryan, our son had CF... they didnt even mention it! what is your sons poop like? if it is oily or discolored, that is a side effect of CF. i hope i am helping you some. we all want to help you in this group. please keep us updated! > > charlotte banks > mother of bryan 3yrswcf > Worried about CF > > Hello, I am a new parent that is constantly being asked to have her > child for CF. However, no one thinks he has it. He is two years old > and has a lot of lung problems and digestive problems. He has GERD and > a lot of allergies. He is constantly getting this nagging cough but > has not cold or drainage. He just coughs until he throws up. SOmetimes > he throws up phelgm and sometimes it is just clear liquid. He has a > lot of rattling in his chest. SOmetimes you can hear it from the > other side to the room. He has only actually been tested once but was > on a steroid. THe steroid keeps his intestines from being inflammed > and controls the vomiting. Can a person have CF and not taste or smell > salty? My doctor questioned me again yesterday about having him > tested. I have previously typed out a letter explaining his problems. > I am sorry to bore yall, but could you please read it and give any > suggestions or advice or opinions. Thanks ahead of time. > > <Hello! I am a mother of two children. Corley is four and > Caleb will be 2 in March 2001. Corley was a very sick child when he > was > born. He had refleux but outgrew it when he turned a year old. He has > been > pretty well since he was 18 months old. ( I took out of daycare and > put > him in home daycare) Now, when caleb came along, he has been sick > since > the first time they put him in my arms. I thought the first year that > he > had what my first child had and he would outgrow it after he was a > year > old. Boy, was I ever wrong. It got ten times worse. My peditrician at > the > time basically told me she did not know what was wrong. He had a > constant > rattle in his chest and uncontrolable vomiting-projectile!. We then > started > taking him to a pulmoniologist (excuse my spelling) to check him out. > She > ran all kinds of test. We started out with allergy testing and moved > all > the way to cystic fiborsis (he does not have). The first allergy > testing > was through the skin. Everything came back negative. & nbsp; & nbsp; The > doctor > had already put him on a steroid, prelone. It started working. However > every time we tried to ween him off of it, the rattleing and throwing > up > started up again. They could not figure out why the steroid was > stopping > the vomiting. She also had several test ran to check out his insides. > There > was no indication of hernias, blockage or anything. The only thing > they > found was that he had delayed gastric emptying. His food was taking > three > times as long to digest than normal. Then, the doctor did an allergy > test > by drawing blood. They discovered he was highly allergic to Milk, and > slightly > allergic to wheat, soy and peanuts. Remember, the whole time he was > still > on the steroid. They are assuming this is why it did not show up the > first > time. We then moved on to a gasterologist. I was not satisfied with > the > first so I got a second opinion. Both doctors had tried to move him > off > the steroid. Again-everytime, the vomiting started again. They ran the > test again on his digestive problem. It was still happening. They also > did a biopsy of his intestins. Both times, his intestines were severly > inflammed. & nbsp; All they wanted was him to stay on the steroid. The > steroid > does help. However, what is it doing to him? There are a lot of > side-effects. > It scares me.</font> > <br><font size=-2>My current doctor, from Houston, Texas, has him > still > on the steroid. He is diagnosed with the delayed gastric emptying and > severe > refleux along with all of the allergies I had mentioned before. He has > stated that he cannot do the refleux surgery because once that is > done, > he can no longer throw up again. Well, if the food is not digesting, > then > it sits there and can cause toxins to build up and could eventually be > very fatal. he also wants us to stay off the food allergies totally. > When > I did, the eceezma totally cleared up.</font> > <br><font size=-2> & nbsp; & nbsp; & nbsp; So now, we are on the steroid and > I am keeping him off the allergic foods. He has also put caleb on a > VERY > expensive formula-Neocate 1. This is to help him get the nutrients he > needs > since he throws up so much. & nbsp; His ecezma is also so much better. > My > concern is now what to do. I am concerned about celiac disease. He has > all the noticiable symptoms. There are some which he cant' tell me if > he > has or not, like painful joints and such. I can just tell by those I > see > by dealing with him everyday. I also got on the internet and looked up > delayed gastric emptying and found out that the number one cause of it > is diabetes. My doctor says don't worry about if he throws-up a little > each day, he's growing (very little, a pound every couple of months). > Yeah-but > no one or daycare wants to keep a child who throws up 2-3 times a > day. & nbsp; > He wants to keep him on the steroid for six more months, he's been on > it > since March 2000, an wait and see what happens. This scares me to > death. > Plus, he is very moody, irritable, urinates constantly, I can never > get > his thirst quenched, he sleeps ALL THE TIME (YES! this can get old) > and > he screams at times and puts our hands on his legs to massage, and I > don't > know the reasons for any of this. I want him tested, don't I? How far > should > I push?</font> > <br><font size=-2>If & nbsp; anyone has any suggestions, answers, PLEASE > let me know! If you think I am overreacting,,please tell me. At this > pint, > I am desperate and I want my child to feel better. Thanks for your > help > ahead of time.</font> > <br><font size=-2> </font> > <br><font size=-2>sldavis@...</font></html> > > *********************** > This is a secular list. > *********************** > > PLEASE do not post religious emails to the list. > > -------------------------------------------------- > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 STACY, does he always seem to be hungry..... meaning... never satisfied? my son bryan ate ALL the time... he would have 2 to 3 bowls of cereal in the mornings... before we knew he had CF. we did not find out he had CF until he was almost 3. you need to check very soon to make sure he doesnt have it or does have it. it is a very serious disease and the quicker you know what is wrong, the better your son will be. i do not want to scare you but i have been where you are. for 3 years no doctors thought bryan, our son had CF... they didnt even mention it! what is your sons poop like? if it is oily or discolored, that is a side effect of CF. i hope i am helping you some. we all want to help you in this group. please keep us updated! charlotte banks mother of bryan 3yrswcf Worried about CF Hello, I am a new parent that is constantly being asked to have her child for CF. However, no one thinks he has it. He is two years old and has a lot of lung problems and digestive problems. He has GERD and a lot of allergies. He is constantly getting this nagging cough but has not cold or drainage. He just coughs until he throws up. SOmetimes he throws up phelgm and sometimes it is just clear liquid. He has a lot of rattling in his chest. SOmetimes you can hear it from the other side to the room. He has only actually been tested once but was on a steroid. THe steroid keeps his intestines from being inflammed and controls the vomiting. Can a person have CF and not taste or smell salty? My doctor questioned me again yesterday about having him tested. I have previously typed out a letter explaining his problems. I am sorry to bore yall, but could you please read it and give any suggestions or advice or opinions. Thanks ahead of time. <Hello! I am a mother of two children. Corley is four and Caleb will be 2 in March 2001. Corley was a very sick child when he was born. He had refleux but outgrew it when he turned a year old. He has been pretty well since he was 18 months old. ( I took out of daycare and put him in home daycare) Now, when caleb came along, he has been sick since the first time they put him in my arms. I thought the first year that he had what my first child had and he would outgrow it after he was a year old. Boy, was I ever wrong. It got ten times worse. My peditrician at the time basically told me she did not know what was wrong. He had a constant rattle in his chest and uncontrolable vomiting-projectile!. We then started taking him to a pulmoniologist (excuse my spelling) to check him out. She ran all kinds of test. We started out with allergy testing and moved all the way to cystic fiborsis (he does not have). The first allergy testing was through the skin. Everything came back negative. & nbsp; & nbsp; The doctor had already put him on a steroid, prelone. It started working. However every time we tried to ween him off of it, the rattleing and throwing up started up again. They could not figure out why the steroid was stopping the vomiting. She also had several test ran to check out his insides. There was no indication of hernias, blockage or anything. The only thing they found was that he had delayed gastric emptying. His food was taking three times as long to digest than normal. Then, the doctor did an allergy test by drawing blood. They discovered he was highly allergic to Milk, and slightly allergic to wheat, soy and peanuts. Remember, the whole time he was still on the steroid. They are assuming this is why it did not show up the first time. We then moved on to a gasterologist. I was not satisfied with the first so I got a second opinion. Both doctors had tried to move him off the steroid. Again-everytime, the vomiting started again. They ran the test again on his digestive problem. It was still happening. They also did a biopsy of his intestins. Both times, his intestines were severly inflammed. & nbsp; All they wanted was him to stay on the steroid. The steroid does help. However, what is it doing to him? There are a lot of side-effects. It scares me.</font> <br><font size=-2>My current doctor, from Houston, Texas, has him still on the steroid. He is diagnosed with the delayed gastric emptying and severe refleux along with all of the allergies I had mentioned before. He has stated that he cannot do the refleux surgery because once that is done, he can no longer throw up again. Well, if the food is not digesting, then it sits there and can cause toxins to build up and could eventually be very fatal. he also wants us to stay off the food allergies totally. When I did, the eceezma totally cleared up.</font> <br><font size=-2> & nbsp; & nbsp; & nbsp; So now, we are on the steroid and I am keeping him off the allergic foods. He has also put caleb on a VERY expensive formula-Neocate 1. This is to help him get the nutrients he needs since he throws up so much. & nbsp; His ecezma is also so much better. My concern is now what to do. I am concerned about celiac disease. He has all the noticiable symptoms. There are some which he cant' tell me if he has or not, like painful joints and such. I can just tell by those I see by dealing with him everyday. I also got on the internet and looked up delayed gastric emptying and found out that the number one cause of it is diabetes. My doctor says don't worry about if he throws-up a little each day, he's growing (very little, a pound every couple of months). Yeah-but no one or daycare wants to keep a child who throws up 2-3 times a day. & nbsp; He wants to keep him on the steroid for six more months, he's been on it since March 2000, an wait and see what happens. This scares me to death. Plus, he is very moody, irritable, urinates constantly, I can never get his thirst quenched, he sleeps ALL THE TIME (YES! this can get old) and he screams at times and puts our hands on his legs to massage, and I don't know the reasons for any of this. I want him tested, don't I? How far should I push?</font> <br><font size=-2>If & nbsp; anyone has any suggestions, answers, PLEASE let me know! If you think I am overreacting,,please tell me. At this pint, I am desperate and I want my child to feel better. Thanks for your help ahead of time.</font> <br><font size=-2> </font> <br><font size=-2>sldavis@...</font></html> *********************** This is a secular list. *********************** PLEASE do not post religious emails to the list. -------------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. -------------------------------------------------- Our webpage is at http://www.eohio.net/malbright/cfparents.htm _________________________________________________ Post message: cfparentsegroups Subscribe: cfparents-subscribeegroups Unsubscribe: cfparents-unsubscribeegroups List owner: cfparents-owneregroups _________________________________________________ WE HAVE A CHAT PAGE!!! /chat/cfparents _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 oh dear.. please go get him checked.... soon that worried me very bad charlotte Worried about CF > > Hello, I am a new parent that is constantly being asked to have her > child for CF. However, no one thinks he has it. He is two years old > and has a lot of lung problems and digestive problems. He has GERD and > a lot of allergies. He is constantly getting this nagging cough but > has not cold or drainage. He just coughs until he throws up. SOmetimes > he throws up phelgm and sometimes it is just clear liquid. He has a > lot of rattling in his chest. SOmetimes you can hear it from the > other side to the room. He has only actually been tested once but was > on a steroid. THe steroid keeps his intestines from being inflammed > and controls the vomiting. Can a person have CF and not taste or smell > salty? My doctor questioned me again yesterday about having him > tested. I have previously typed out a letter explaining his problems. > I am sorry to bore yall, but could you please read it and give any > suggestions or advice or opinions. Thanks ahead of time. > > <Hello! I am a mother of two children. Corley is four and > Caleb will be 2 in March 2001. Corley was a very sick child when he > was > born. He had refleux but outgrew it when he turned a year old. He has > been > pretty well since he was 18 months old. ( I took out of daycare and > put > him in home daycare) Now, when caleb came along, he has been sick > since > the first time they put him in my arms. I thought the first year that > he > had what my first child had and he would outgrow it after he was a > year > old. Boy, was I ever wrong. It got ten times worse. My peditrician at > the > time basically told me she did not know what was wrong. He had a > constant > rattle in his chest and uncontrolable vomiting-projectile!. We then > started > taking him to a pulmoniologist (excuse my spelling) to check him out. > She > ran all kinds of test. We started out with allergy testing and moved > all > the way to cystic fiborsis (he does not have). The first allergy > testing > was through the skin. Everything came back negative. & nbsp; & nbsp; The > doctor > had already put him on a steroid, prelone. It started working. However > every time we tried to ween him off of it, the rattleing and throwing > up > started up again. They could not figure out why the steroid was > stopping > the vomiting. She also had several test ran to check out his insides. > There > was no indication of hernias, blockage or anything. The only thing > they > found was that he had delayed gastric emptying. His food was taking > three > times as long to digest than normal. Then, the doctor did an allergy > test > by drawing blood. They discovered he was highly allergic to Milk, and > slightly > allergic to wheat, soy and peanuts. Remember, the whole time he was > still > on the steroid. They are assuming this is why it did not show up the > first > time. We then moved on to a gasterologist. I was not satisfied with > the > first so I got a second opinion. Both doctors had tried to move him > off > the steroid. Again-everytime, the vomiting started again. They ran the > test again on his digestive problem. It was still happening. They also > did a biopsy of his intestins. Both times, his intestines were severly > inflammed. & nbsp; All they wanted was him to stay on the steroid. The > steroid > does help. However, what is it doing to him? There are a lot of > side-effects. > It scares me.</font> > <br><font size=-2>My current doctor, from Houston, Texas, has him > still > on the steroid. He is diagnosed with the delayed gastric emptying and > severe > refleux along with all of the allergies I had mentioned before. He has > stated that he cannot do the refleux surgery because once that is > done, > he can no longer throw up again. Well, if the food is not digesting, > then > it sits there and can cause toxins to build up and could eventually be > very fatal. he also wants us to stay off the food allergies totally. > When > I did, the eceezma totally cleared up.</font> > <br><font size=-2> & nbsp; & nbsp; & nbsp; So now, we are on the steroid and > I am keeping him off the allergic foods. He has also put caleb on a > VERY > expensive formula-Neocate 1. This is to help him get the nutrients he > needs > since he throws up so much. & nbsp; His ecezma is also so much better. > My > concern is now what to do. I am concerned about celiac disease. He has > all the noticiable symptoms. There are some which he cant' tell me if > he > has or not, like painful joints and such. I can just tell by those I > see > by dealing with him everyday. I also got on the internet and looked up > delayed gastric emptying and found out that the number one cause of it > is diabetes. My doctor says don't worry about if he throws-up a little > each day, he's growing (very little, a pound every couple of months). > Yeah-but > no one or daycare wants to keep a child who throws up 2-3 times a > day. & nbsp; > He wants to keep him on the steroid for six more months, he's been on > it > since March 2000, an wait and see what happens. This scares me to > death. > Plus, he is very moody, irritable, urinates constantly, I can never > get > his thirst quenched, he sleeps ALL THE TIME (YES! this can get old) > and > he screams at times and puts our hands on his legs to massage, and I > don't > know the reasons for any of this. I want him tested, don't I? How far > should > I push?</font> > <br><font size=-2>If & nbsp; anyone has any suggestions, answers, PLEASE > let me know! If you think I am overreacting,,please tell me. At this > pint, > I am desperate and I want my child to feel better. Thanks for your > help > ahead of time.</font> > <br><font size=-2> </font> > <br><font size=-2>sldavis@...</font></html> > > *********************** > This is a secular list. > *********************** > > PLEASE do not post religious emails to the list. > > -------------------------------------------------- > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 Once, it came back negative but you know how a mom has that instinct that maybe it didn't get done right. It came back negative but he was also on 4cc of a vary strong steroid. The allergy test he took at the same time also came back negative and since we found he has a very serious allergy to milk. SO, I don't know what to believe. Mandy wrote: > Has your son ha a sweat test? > Mandy > > > > >Reply-To: cfparentsegroups > >To: cfparentsegroups > >Subject: Worried about CF > >Date: Wed, 29 Nov 2000 17:20:23 -0000 > > > >Hello, I am a new parent that is constantly being asked to have her > >child for CF. However, no one thinks he has it. He is two years old > >and has a lot of lung problems and digestive problems. He has GERD and > >a lot of allergies. He is constantly getting this nagging cough but > >has not cold or drainage. He just coughs until he throws up. SOmetimes > >he throws up phelgm and sometimes it is just clear liquid. He has a > >lot of rattling in his chest. SOmetimes you can hear it from the > >other side to the room. He has only actually been tested once but was > >on a steroid. THe steroid keeps his intestines from being inflammed > >and controls the vomiting. Can a person have CF and not taste or smell > >salty? My doctor questioned me again yesterday about having him > >tested. I have previously typed out a letter explaining his problems. > >I am sorry to bore yall, but could you please read it and give any > >suggestions or advice or opinions. Thanks ahead of time. > > > ><Hello! I am a mother of two children. Corley is four and > >Caleb will be 2 in March 2001. Corley was a very sick child when he > >was > >born. He had refleux but outgrew it when he turned a year old. He has > >been > >pretty well since he was 18 months old. ( I took out of daycare and > >put > >him in home daycare) Now, when caleb came along, he has been sick > >since > >the first time they put him in my arms. I thought the first year that > >he > >had what my first child had and he would outgrow it after he was a > >year > >old. Boy, was I ever wrong. It got ten times worse. My peditrician at > >the > >time basically told me she did not know what was wrong. He had a > >constant > >rattle in his chest and uncontrolable vomiting-projectile!. We then > >started > >taking him to a pulmoniologist (excuse my spelling) to check him out. > >She > >ran all kinds of test. We started out with allergy testing and moved > >all > >the way to cystic fiborsis (he does not have). The first allergy > >testing > >was through the skin. Everything came back negative. & nbsp; & nbsp; The > >doctor > >had already put him on a steroid, prelone. It started working. However > >every time we tried to ween him off of it, the rattleing and throwing > >up > >started up again. They could not figure out why the steroid was > >stopping > >the vomiting. She also had several test ran to check out his insides. > >There > >was no indication of hernias, blockage or anything. The only thing > >they > >found was that he had delayed gastric emptying. His food was taking > >three > >times as long to digest than normal. Then, the doctor did an allergy > >test > >by drawing blood. They discovered he was highly allergic to Milk, and > >slightly > >allergic to wheat, soy and peanuts. Remember, the whole time he was > >still > >on the steroid. They are assuming this is why it did not show up the > >first > >time. We then moved on to a gasterologist. I was not satisfied with > >the > >first so I got a second opinion. Both doctors had tried to move him > >off > >the steroid. Again-everytime, the vomiting started again. They ran the > >test again on his digestive problem. It was still happening. They also > >did a biopsy of his intestins. Both times, his intestines were severly > >inflammed. & nbsp; All they wanted was him to stay on the steroid. The > >steroid > >does help. However, what is it doing to him? There are a lot of > >side-effects. > >It scares me.</font> > ><br><font size=-2>My current doctor, from Houston, Texas, has him > >still > >on the steroid. He is diagnosed with the delayed gastric emptying and > >severe > >refleux along with all of the allergies I had mentioned before. He has > >stated that he cannot do the refleux surgery because once that is > >done, > >he can no longer throw up again. Well, if the food is not digesting, > >then > >it sits there and can cause toxins to build up and could eventually be > >very fatal. he also wants us to stay off the food allergies totally. > >When > >I did, the eceezma totally cleared up.</font> > ><br><font size=-2> & nbsp; & nbsp; & nbsp; So now, we are on the steroid and > >I am keeping him off the allergic foods. He has also put caleb on a > >VERY > >expensive formula-Neocate 1. This is to help him get the nutrients he > >needs > >since he throws up so much. & nbsp; His ecezma is also so much better. > >My > >concern is now what to do. I am concerned about celiac disease. He has > >all the noticiable symptoms. There are some which he cant' tell me if > >he > >has or not, like painful joints and such. I can just tell by those I > >see > >by dealing with him everyday. I also got on the internet and looked up > >delayed gastric emptying and found out that the number one cause of it > >is diabetes. My doctor says don't worry about if he throws-up a little > >each day, he's growing (very little, a pound every couple of months). > >Yeah-but > >no one or daycare wants to keep a child who throws up 2-3 times a > >day. & nbsp; > >He wants to keep him on the steroid for six more months, he's been on > >it > >since March 2000, an wait and see what happens. This scares me to > >death. > >Plus, he is very moody, irritable, urinates constantly, I can never > >get > >his thirst quenched, he sleeps ALL THE TIME (YES! this can get old) > >and > >he screams at times and puts our hands on his legs to massage, and I > >don't > >know the reasons for any of this. I want him tested, don't I? How far > >should > >I push?</font> > ><br><font size=-2>If & nbsp; anyone has any suggestions, answers, PLEASE > >let me know! If you think I am overreacting,,please tell me. At this > >pint, > >I am desperate and I want my child to feel better. Thanks for your > >help > >ahead of time.</font> > ><br><font size=-2> </font> > ><br><font size=-2>sldavis@...</font></html> > > > > > > > > ________________________________________________________________________________\ _____ > Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com > > > *********************** > This is a secular list. > *********************** > > PLEASE do not post religious emails to the list. > > -------------------------------------------------- > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 why? Banks wrote: > oh dear.. please go get him checked.... soon > > that worried me very bad > > charlotte > Worried about CF > > > > Hello, I am a new parent that is constantly being asked to have her > > child for CF. However, no one thinks he has it. He is two years old > > and has a lot of lung problems and digestive problems. He has GERD and > > a lot of allergies. He is constantly getting this nagging cough but > > has not cold or drainage. He just coughs until he throws up. SOmetimes > > he throws up phelgm and sometimes it is just clear liquid. He has a > > lot of rattling in his chest. SOmetimes you can hear it from the > > other side to the room. He has only actually been tested once but was > > on a steroid. THe steroid keeps his intestines from being inflammed > > and controls the vomiting. Can a person have CF and not taste or smell > > salty? My doctor questioned me again yesterday about having him > > tested. I have previously typed out a letter explaining his problems. > > I am sorry to bore yall, but could you please read it and give any > > suggestions or advice or opinions. Thanks ahead of time. > > > > <Hello! I am a mother of two children. Corley is four and > > Caleb will be 2 in March 2001. Corley was a very sick child when he > > was > > born. He had refleux but outgrew it when he turned a year old. He has > > been > > pretty well since he was 18 months old. ( I took out of daycare and > > put > > him in home daycare) Now, when caleb came along, he has been sick > > since > > the first time they put him in my arms. I thought the first year that > > he > > had what my first child had and he would outgrow it after he was a > > year > > old. Boy, was I ever wrong. It got ten times worse. My peditrician at > > the > > time basically told me she did not know what was wrong. He had a > > constant > > rattle in his chest and uncontrolable vomiting-projectile!. We then > > started > > taking him to a pulmoniologist (excuse my spelling) to check him out. > > She > > ran all kinds of test. We started out with allergy testing and moved > > all > > the way to cystic fiborsis (he does not have). The first allergy > > testing > > was through the skin. Everything came back negative. & nbsp; & nbsp; The > > doctor > > had already put him on a steroid, prelone. It started working. However > > every time we tried to ween him off of it, the rattleing and throwing > > up > > started up again. They could not figure out why the steroid was > > stopping > > the vomiting. She also had several test ran to check out his insides. > > There > > was no indication of hernias, blockage or anything. The only thing > > they > > found was that he had delayed gastric emptying. His food was taking > > three > > times as long to digest than normal. Then, the doctor did an allergy > > test > > by drawing blood. They discovered he was highly allergic to Milk, and > > slightly > > allergic to wheat, soy and peanuts. Remember, the whole time he was > > still > > on the steroid. They are assuming this is why it did not show up the > > first > > time. We then moved on to a gasterologist. I was not satisfied with > > the > > first so I got a second opinion. Both doctors had tried to move him > > off > > the steroid. Again-everytime, the vomiting started again. They ran the > > test again on his digestive problem. It was still happening. They also > > did a biopsy of his intestins. Both times, his intestines were severly > > inflammed. & nbsp; All they wanted was him to stay on the steroid. The > > steroid > > does help. However, what is it doing to him? There are a lot of > > side-effects. > > It scares me.</font> > > <br><font size=-2>My current doctor, from Houston, Texas, has him > > still > > on the steroid. He is diagnosed with the delayed gastric emptying and > > severe > > refleux along with all of the allergies I had mentioned before. He has > > stated that he cannot do the refleux surgery because once that is > > done, > > he can no longer throw up again. Well, if the food is not digesting, > > then > > it sits there and can cause toxins to build up and could eventually be > > very fatal. he also wants us to stay off the food allergies totally. > > When > > I did, the eceezma totally cleared up.</font> > > <br><font size=-2> & nbsp; & nbsp; & nbsp; So now, we are on the steroid and > > I am keeping him off the allergic foods. He has also put caleb on a > > VERY > > expensive formula-Neocate 1. This is to help him get the nutrients he > > needs > > since he throws up so much. & nbsp; His ecezma is also so much better. > > My > > concern is now what to do. I am concerned about celiac disease. He has > > all the noticiable symptoms. There are some which he cant' tell me if > > he > > has or not, like painful joints and such. I can just tell by those I > > see > > by dealing with him everyday. I also got on the internet and looked up > > delayed gastric emptying and found out that the number one cause of it > > is diabetes. My doctor says don't worry about if he throws-up a little > > each day, he's growing (very little, a pound every couple of months). > > Yeah-but > > no one or daycare wants to keep a child who throws up 2-3 times a > > day. & nbsp; > > He wants to keep him on the steroid for six more months, he's been on > > it > > since March 2000, an wait and see what happens. This scares me to > > death. > > Plus, he is very moody, irritable, urinates constantly, I can never > > get > > his thirst quenched, he sleeps ALL THE TIME (YES! this can get old) > > and > > he screams at times and puts our hands on his legs to massage, and I > > don't > > know the reasons for any of this. I want him tested, don't I? How far > > should > > I push?</font> > > <br><font size=-2>If & nbsp; anyone has any suggestions, answers, PLEASE > > let me know! If you think I am overreacting,,please tell me. At this > > pint, > > I am desperate and I want my child to feel better. Thanks for your > > help > > ahead of time.</font> > > <br><font size=-2> </font> > > <br><font size=-2>sldavis@...</font></html> > > > > *********************** > > This is a secular list. > > *********************** > > > > PLEASE do not post religious emails to the list. > > > > -------------------------------------------------- > > > > The opinions and information exchanged on this list should > > IN NO WAY > > be construed as medical advice. > > > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > > > -------------------------------------------------- > > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > > > _________________________________________________ > > Post message: cfparentsegroups > > Subscribe: cfparents-subscribeegroups > > Unsubscribe: cfparents-unsubscribeegroups > > List owner: cfparents-owneregroups > > _________________________________________________ > > > > WE HAVE A CHAT PAGE!!! > > /chat/cfparents > > _________________________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 Ill ask! ron88jen@... wrote: > In a message dated 11/29/00 2:10:20 PM Eastern Standard Time, > sldavis@... writes: > > << Once, it came back negative but you know how a mom has that instinct that > maybe it didn't > get done right. It came back negative but he was also on 4cc of a vary > strong steroid. > The allergy test he took at the same time also came back negative and since > we found he > has a very serious allergy to milk. SO, I don't know what to believe. > >> > Based on my understanding (and we have certainly read up on it a bit, b/c of > Mallory's initial neg. sweat test), steriods do NOT effect the sweat test, > though they do affect allergy testing. That is b/c they suppress the > inflammatory response. My understanding is that the only thing that may > effect the sweat test, is not getting enough sweat, or edema if it is severe > enough...... > there are some mutations, however, of the CF gene that are associated with > neg. sweat tests. How about asking for the genzyme 90+ allele test for cf > mutations? > Jen > > > *********************** > This is a secular list. > *********************** > > PLEASE do not post religious emails to the list. > > -------------------------------------------------- > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 I just got a call from my pedi and and she called the GI in Houston and he is going to test for celiac, diabetes and is going to get an endoscopy and take biopoises to test for a number of things. Its amazing! wrote: > why? > > Banks wrote: > > > oh dear.. please go get him checked.... soon > > > > that worried me very bad > > > > charlotte > > Worried about CF > > > > > > Hello, I am a new parent that is constantly being asked to have her > > > child for CF. However, no one thinks he has it. He is two years old > > > and has a lot of lung problems and digestive problems. He has GERD and > > > a lot of allergies. He is constantly getting this nagging cough but > > > has not cold or drainage. He just coughs until he throws up. SOmetimes > > > he throws up phelgm and sometimes it is just clear liquid. He has a > > > lot of rattling in his chest. SOmetimes you can hear it from the > > > other side to the room. He has only actually been tested once but was > > > on a steroid. THe steroid keeps his intestines from being inflammed > > > and controls the vomiting. Can a person have CF and not taste or smell > > > salty? My doctor questioned me again yesterday about having him > > > tested. I have previously typed out a letter explaining his problems. > > > I am sorry to bore yall, but could you please read it and give any > > > suggestions or advice or opinions. Thanks ahead of time. > > > > > > <Hello! I am a mother of two children. Corley is four and > > > Caleb will be 2 in March 2001. Corley was a very sick child when he > > > was > > > born. He had refleux but outgrew it when he turned a year old. He has > > > been > > > pretty well since he was 18 months old. ( I took out of daycare and > > > put > > > him in home daycare) Now, when caleb came along, he has been sick > > > since > > > the first time they put him in my arms. I thought the first year that > > > he > > > had what my first child had and he would outgrow it after he was a > > > year > > > old. Boy, was I ever wrong. It got ten times worse. My peditrician at > > > the > > > time basically told me she did not know what was wrong. He had a > > > constant > > > rattle in his chest and uncontrolable vomiting-projectile!. We then > > > started > > > taking him to a pulmoniologist (excuse my spelling) to check him out. > > > She > > > ran all kinds of test. We started out with allergy testing and moved > > > all > > > the way to cystic fiborsis (he does not have). The first allergy > > > testing > > > was through the skin. Everything came back negative. & nbsp; & nbsp; The > > > doctor > > > had already put him on a steroid, prelone. It started working. However > > > every time we tried to ween him off of it, the rattleing and throwing > > > up > > > started up again. They could not figure out why the steroid was > > > stopping > > > the vomiting. She also had several test ran to check out his insides. > > > There > > > was no indication of hernias, blockage or anything. The only thing > > > they > > > found was that he had delayed gastric emptying. His food was taking > > > three > > > times as long to digest than normal. Then, the doctor did an allergy > > > test > > > by drawing blood. They discovered he was highly allergic to Milk, and > > > slightly > > > allergic to wheat, soy and peanuts. Remember, the whole time he was > > > still > > > on the steroid. They are assuming this is why it did not show up the > > > first > > > time. We then moved on to a gasterologist. I was not satisfied with > > > the > > > first so I got a second opinion. Both doctors had tried to move him > > > off > > > the steroid. Again-everytime, the vomiting started again. They ran the > > > test again on his digestive problem. It was still happening. They also > > > did a biopsy of his intestins. Both times, his intestines were severly > > > inflammed. & nbsp; All they wanted was him to stay on the steroid. The > > > steroid > > > does help. However, what is it doing to him? There are a lot of > > > side-effects. > > > It scares me.</font> > > > <br><font size=-2>My current doctor, from Houston, Texas, has him > > > still > > > on the steroid. He is diagnosed with the delayed gastric emptying and > > > severe > > > refleux along with all of the allergies I had mentioned before. He has > > > stated that he cannot do the refleux surgery because once that is > > > done, > > > he can no longer throw up again. Well, if the food is not digesting, > > > then > > > it sits there and can cause toxins to build up and could eventually be > > > very fatal. he also wants us to stay off the food allergies totally. > > > When > > > I did, the eceezma totally cleared up.</font> > > > <br><font size=-2> & nbsp; & nbsp; & nbsp; So now, we are on the steroid and > > > I am keeping him off the allergic foods. He has also put caleb on a > > > VERY > > > expensive formula-Neocate 1. This is to help him get the nutrients he > > > needs > > > since he throws up so much. & nbsp; His ecezma is also so much better. > > > My > > > concern is now what to do. I am concerned about celiac disease. He has > > > all the noticiable symptoms. There are some which he cant' tell me if > > > he > > > has or not, like painful joints and such. I can just tell by those I > > > see > > > by dealing with him everyday. I also got on the internet and looked up > > > delayed gastric emptying and found out that the number one cause of it > > > is diabetes. My doctor says don't worry about if he throws-up a little > > > each day, he's growing (very little, a pound every couple of months). > > > Yeah-but > > > no one or daycare wants to keep a child who throws up 2-3 times a > > > day. & nbsp; > > > He wants to keep him on the steroid for six more months, he's been on > > > it > > > since March 2000, an wait and see what happens. This scares me to > > > death. > > > Plus, he is very moody, irritable, urinates constantly, I can never > > > get > > > his thirst quenched, he sleeps ALL THE TIME (YES! this can get old) > > > and > > > he screams at times and puts our hands on his legs to massage, and I > > > don't > > > know the reasons for any of this. I want him tested, don't I? How far > > > should > > > I push?</font> > > > <br><font size=-2>If & nbsp; anyone has any suggestions, answers, PLEASE > > > let me know! If you think I am overreacting,,please tell me. At this > > > pint, > > > I am desperate and I want my child to feel better. Thanks for your > > > help > > > ahead of time.</font> > > > <br><font size=-2> </font> > > > <br><font size=-2>sldavis@...</font></html> > > > > > > *********************** > > > This is a secular list. > > > *********************** > > > > > > PLEASE do not post religious emails to the list. > > > > > > -------------------------------------------------- > > > > > > The opinions and information exchanged on this list should > > > IN NO WAY > > > be construed as medical advice. > > > > > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > > > > > -------------------------------------------------- > > > > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > > > > > _________________________________________________ > > > Post message: cfparentsegroups > > > Subscribe: cfparents-subscribeegroups > > > Unsubscribe: cfparents-unsubscribeegroups > > > List owner: cfparents-owneregroups > > > _________________________________________________ > > > > > > WE HAVE A CHAT PAGE!!! > > > /chat/cfparents > > > _________________________________________________ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 because all his symptons sound like he has CF Worried about CF > > > > Hello, I am a new parent that is constantly being asked to have her > > child for CF. However, no one thinks he has it. He is two years old > > and has a lot of lung problems and digestive problems. He has GERD and > > a lot of allergies. He is constantly getting this nagging cough but > > has not cold or drainage. He just coughs until he throws up. SOmetimes > > he throws up phelgm and sometimes it is just clear liquid. He has a > > lot of rattling in his chest. SOmetimes you can hear it from the > > other side to the room. He has only actually been tested once but was > > on a steroid. THe steroid keeps his intestines from being inflammed > > and controls the vomiting. Can a person have CF and not taste or smell > > salty? My doctor questioned me again yesterday about having him > > tested. I have previously typed out a letter explaining his problems. > > I am sorry to bore yall, but could you please read it and give any > > suggestions or advice or opinions. Thanks ahead of time. > > > > <Hello! I am a mother of two children. Corley is four and > > Caleb will be 2 in March 2001. Corley was a very sick child when he > > was > > born. He had refleux but outgrew it when he turned a year old. He has > > been > > pretty well since he was 18 months old. ( I took out of daycare and > > put > > him in home daycare) Now, when caleb came along, he has been sick > > since > > the first time they put him in my arms. I thought the first year that > > he > > had what my first child had and he would outgrow it after he was a > > year > > old. Boy, was I ever wrong. It got ten times worse. My peditrician at > > the > > time basically told me she did not know what was wrong. He had a > > constant > > rattle in his chest and uncontrolable vomiting-projectile!. We then > > started > > taking him to a pulmoniologist (excuse my spelling) to check him out. > > She > > ran all kinds of test. We started out with allergy testing and moved > > all > > the way to cystic fiborsis (he does not have). The first allergy > > testing > > was through the skin. Everything came back negative. & nbsp; & nbsp; The > > doctor > > had already put him on a steroid, prelone. It started working. However > > every time we tried to ween him off of it, the rattleing and throwing > > up > > started up again. They could not figure out why the steroid was > > stopping > > the vomiting. She also had several test ran to check out his insides. > > There > > was no indication of hernias, blockage or anything. The only thing > > they > > found was that he had delayed gastric emptying. His food was taking > > three > > times as long to digest than normal. Then, the doctor did an allergy > > test > > by drawing blood. They discovered he was highly allergic to Milk, and > > slightly > > allergic to wheat, soy and peanuts. Remember, the whole time he was > > still > > on the steroid. They are assuming this is why it did not show up the > > first > > time. We then moved on to a gasterologist. I was not satisfied with > > the > > first so I got a second opinion. Both doctors had tried to move him > > off > > the steroid. Again-everytime, the vomiting started again. They ran the > > test again on his digestive problem. It was still happening. They also > > did a biopsy of his intestins. Both times, his intestines were severly > > inflammed. & nbsp; All they wanted was him to stay on the steroid. The > > steroid > > does help. However, what is it doing to him? There are a lot of > > side-effects. > > It scares me.</font> > > <br><font size=-2>My current doctor, from Houston, Texas, has him > > still > > on the steroid. He is diagnosed with the delayed gastric emptying and > > severe > > refleux along with all of the allergies I had mentioned before. He has > > stated that he cannot do the refleux surgery because once that is > > done, > > he can no longer throw up again. Well, if the food is not digesting, > > then > > it sits there and can cause toxins to build up and could eventually be > > very fatal. he also wants us to stay off the food allergies totally. > > When > > I did, the eceezma totally cleared up.</font> > > <br><font size=-2> & nbsp; & nbsp; & nbsp; So now, we are on the steroid and > > I am keeping him off the allergic foods. He has also put caleb on a > > VERY > > expensive formula-Neocate 1. This is to help him get the nutrients he > > needs > > since he throws up so much. & nbsp; His ecezma is also so much better. > > My > > concern is now what to do. I am concerned about celiac disease. He has > > all the noticiable symptoms. There are some which he cant' tell me if > > he > > has or not, like painful joints and such. I can just tell by those I > > see > > by dealing with him everyday. I also got on the internet and looked up > > delayed gastric emptying and found out that the number one cause of it > > is diabetes. My doctor says don't worry about if he throws-up a little > > each day, he's growing (very little, a pound every couple of months). > > Yeah-but > > no one or daycare wants to keep a child who throws up 2-3 times a > > day. & nbsp; > > He wants to keep him on the steroid for six more months, he's been on > > it > > since March 2000, an wait and see what happens. This scares me to > > death. > > Plus, he is very moody, irritable, urinates constantly, I can never > > get > > his thirst quenched, he sleeps ALL THE TIME (YES! this can get old) > > and > > he screams at times and puts our hands on his legs to massage, and I > > don't > > know the reasons for any of this. I want him tested, don't I? How far > > should > > I push?</font> > > <br><font size=-2>If & nbsp; anyone has any suggestions, answers, PLEASE > > let me know! If you think I am overreacting,,please tell me. At this > > pint, > > I am desperate and I want my child to feel better. Thanks for your > > help > > ahead of time.</font> > > <br><font size=-2> </font> > > <br><font size=-2>sldavis@...</font></html> > > > > *********************** > > This is a secular list. > > *********************** > > > > PLEASE do not post religious emails to the list. > > > > -------------------------------------------------- > > > > The opinions and information exchanged on this list should > > IN NO WAY > > be construed as medical advice. > > > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > > > -------------------------------------------------- > > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > > > _________________________________________________ > > Post message: cfparentsegroups > > Subscribe: cfparents-subscribeegroups > > Unsubscribe: cfparents-unsubscribeegroups > > List owner: cfparents-owneregroups > > _________________________________________________ > > > > WE HAVE A CHAT PAGE!!! > > /chat/cfparents > > _________________________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 I am also new to this list but my 9yr old has bronchi asthma and he also sounds like your son. just before he has a asthma attack he throws up all day then it goes into the rattling. he is very lethargic and wants just to lay down. he does not have asthma in the traditional sense but the steroids do work. what we did do is put him on coffee (take him off all forms of caffeine this makes it work better) when he felt sick or threw up we gave him just coffee he usually doesn't want to eat. we even got so we could look at his eyes as they would get glassy looking and give him coffee. we did live in city up until he was 7 and sense moving to a rural area he has not had a attack for 2yr years except when virus come around and that will trigger it still. hope this helps. Cherie deep in the woods of Maine. Worried about CF > Hello, I am a new parent that is constantly being asked to have her > child for CF. However, no one thinks he has it. He is two years old > and has a lot of lung problems and digestive problems. He has GERD and > a lot of allergies. He is constantly getting this nagging cough but > has not cold or drainage. He just coughs until he throws up. SOmetimes > he throws up phelgm and sometimes it is just clear liquid. He has a > lot of rattling in his chest. SOmetimes you can hear it from the > other side to the room. He has only actually been tested once but was > on a steroid. THe steroid keeps his intestines from being inflammed > and controls the vomiting. Can a person have CF and not taste or smell > salty? My doctor questioned me again yesterday about having him > tested. I have previously typed out a letter explaining his problems. > I am sorry to bore yall, but could you please read it and give any > suggestions or advice or opinions. Thanks ahead of time. > > <Hello! I am a mother of two children. Corley is four and > Caleb will be 2 in March 2001. Corley was a very sick child when he > was > born. He had refleux but outgrew it when he turned a year old. He has > been > pretty well since he was 18 months old. ( I took out of daycare and > put > him in home daycare) Now, when caleb came along, he has been sick > since > the first time they put him in my arms. I thought the first year that > he > had what my first child had and he would outgrow it after he was a > year > old. Boy, was I ever wrong. It got ten times worse. My peditrician at > the > time basically told me she did not know what was wrong. He had a > constant > rattle in his chest and uncontrolable vomiting-projectile!. We then > started > taking him to a pulmoniologist (excuse my spelling) to check him out. > She > ran all kinds of test. We started out with allergy testing and moved > all > the way to cystic fiborsis (he does not have). The first allergy > testing > was through the skin. Everything came back negative. & nbsp; & nbsp; The > doctor > had already put him on a steroid, prelone. It started working. However > every time we tried to ween him off of it, the rattleing and throwing > up > started up again. They could not figure out why the steroid was > stopping > the vomiting. She also had several test ran to check out his insides. > There > was no indication of hernias, blockage or anything. The only thing > they > found was that he had delayed gastric emptying. His food was taking > three > times as long to digest than normal. Then, the doctor did an allergy > test > by drawing blood. They discovered he was highly allergic to Milk, and > slightly > allergic to wheat, soy and peanuts. Remember, the whole time he was > still > on the steroid. They are assuming this is why it did not show up the > first > time. We then moved on to a gasterologist. I was not satisfied with > the > first so I got a second opinion. Both doctors had tried to move him > off > the steroid. Again-everytime, the vomiting started again. They ran the > test again on his digestive problem. It was still happening. They also > did a biopsy of his intestins. Both times, his intestines were severly > inflammed. & nbsp; All they wanted was him to stay on the steroid. The > steroid > does help. However, what is it doing to him? There are a lot of > side-effects. > It scares me.</font> > <br><font size=-2>My current doctor, from Houston, Texas, has him > still > on the steroid. He is diagnosed with the delayed gastric emptying and > severe > refleux along with all of the allergies I had mentioned before. He has > stated that he cannot do the refleux surgery because once that is > done, > he can no longer throw up again. Well, if the food is not digesting, > then > it sits there and can cause toxins to build up and could eventually be > very fatal. he also wants us to stay off the food allergies totally. > When > I did, the eceezma totally cleared up.</font> > <br><font size=-2> & nbsp; & nbsp; & nbsp; So now, we are on the steroid and > I am keeping him off the allergic foods. He has also put caleb on a > VERY > expensive formula-Neocate 1. This is to help him get the nutrients he > needs > since he throws up so much. & nbsp; His ecezma is also so much better. > My > concern is now what to do. I am concerned about celiac disease. He has > all the noticiable symptoms. There are some which he cant' tell me if > he > has or not, like painful joints and such. I can just tell by those I > see > by dealing with him everyday. I also got on the internet and looked up > delayed gastric emptying and found out that the number one cause of it > is diabetes. My doctor says don't worry about if he throws-up a little > each day, he's growing (very little, a pound every couple of months). > Yeah-but > no one or daycare wants to keep a child who throws up 2-3 times a > day. & nbsp; > He wants to keep him on the steroid for six more months, he's been on > it > since March 2000, an wait and see what happens. This scares me to > death. > Plus, he is very moody, irritable, urinates constantly, I can never > get > his thirst quenched, he sleeps ALL THE TIME (YES! this can get old) > and > he screams at times and puts our hands on his legs to massage, and I > don't > know the reasons for any of this. I want him tested, don't I? How far > should > I push?</font> > <br><font size=-2>If & nbsp; anyone has any suggestions, answers, PLEASE > let me know! If you think I am overreacting,,please tell me. At this > pint, > I am desperate and I want my child to feel better. Thanks for your > help > ahead of time.</font> > <br><font size=-2> </font> > <br><font size=-2>sldavis@...</font></html> > > > > > > *********************** > This is a secular list. > *********************** > > > PLEASE do not post religious emails to the list. > > > -------------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 I am also new to this list but my 9yr old has bronchi asthma and he also sounds like your son. just before he has a asthma attack he throws up all day then it goes into the rattling. he is very lethargic and wants just to lay down. he does not have asthma in the traditional sense but the steroids do work. what we did do is put him on coffee (take him off all forms of caffeine this makes it work better) when he felt sick or threw up we gave him just coffee he usually doesn't want to eat. we even got so we could look at his eyes as they would get glassy looking and give him coffee. we did live in city up until he was 7 and sense moving to a rural area he has not had a attack for 2yr years except when virus come around and that will trigger it still. hope this helps. Cherie deep in the woods of Maine. Worried about CF > Hello, I am a new parent that is constantly being asked to have her > child for CF. However, no one thinks he has it. He is two years old > and has a lot of lung problems and digestive problems. He has GERD and > a lot of allergies. He is constantly getting this nagging cough but > has not cold or drainage. He just coughs until he throws up. SOmetimes > he throws up phelgm and sometimes it is just clear liquid. He has a > lot of rattling in his chest. SOmetimes you can hear it from the > other side to the room. He has only actually been tested once but was > on a steroid. THe steroid keeps his intestines from being inflammed > and controls the vomiting. Can a person have CF and not taste or smell > salty? My doctor questioned me again yesterday about having him > tested. I have previously typed out a letter explaining his problems. > I am sorry to bore yall, but could you please read it and give any > suggestions or advice or opinions. Thanks ahead of time. > > <Hello! I am a mother of two children. Corley is four and > Caleb will be 2 in March 2001. Corley was a very sick child when he > was > born. He had refleux but outgrew it when he turned a year old. He has > been > pretty well since he was 18 months old. ( I took out of daycare and > put > him in home daycare) Now, when caleb came along, he has been sick > since > the first time they put him in my arms. I thought the first year that > he > had what my first child had and he would outgrow it after he was a > year > old. Boy, was I ever wrong. It got ten times worse. My peditrician at > the > time basically told me she did not know what was wrong. He had a > constant > rattle in his chest and uncontrolable vomiting-projectile!. We then > started > taking him to a pulmoniologist (excuse my spelling) to check him out. > She > ran all kinds of test. We started out with allergy testing and moved > all > the way to cystic fiborsis (he does not have). The first allergy > testing > was through the skin. Everything came back negative. & nbsp; & nbsp; The > doctor > had already put him on a steroid, prelone. It started working. However > every time we tried to ween him off of it, the rattleing and throwing > up > started up again. They could not figure out why the steroid was > stopping > the vomiting. She also had several test ran to check out his insides. > There > was no indication of hernias, blockage or anything. The only thing > they > found was that he had delayed gastric emptying. His food was taking > three > times as long to digest than normal. Then, the doctor did an allergy > test > by drawing blood. They discovered he was highly allergic to Milk, and > slightly > allergic to wheat, soy and peanuts. Remember, the whole time he was > still > on the steroid. They are assuming this is why it did not show up the > first > time. We then moved on to a gasterologist. I was not satisfied with > the > first so I got a second opinion. Both doctors had tried to move him > off > the steroid. Again-everytime, the vomiting started again. They ran the > test again on his digestive problem. It was still happening. They also > did a biopsy of his intestins. Both times, his intestines were severly > inflammed. & nbsp; All they wanted was him to stay on the steroid. The > steroid > does help. However, what is it doing to him? There are a lot of > side-effects. > It scares me.</font> > <br><font size=-2>My current doctor, from Houston, Texas, has him > still > on the steroid. He is diagnosed with the delayed gastric emptying and > severe > refleux along with all of the allergies I had mentioned before. He has > stated that he cannot do the refleux surgery because once that is > done, > he can no longer throw up again. Well, if the food is not digesting, > then > it sits there and can cause toxins to build up and could eventually be > very fatal. he also wants us to stay off the food allergies totally. > When > I did, the eceezma totally cleared up.</font> > <br><font size=-2> & nbsp; & nbsp; & nbsp; So now, we are on the steroid and > I am keeping him off the allergic foods. He has also put caleb on a > VERY > expensive formula-Neocate 1. This is to help him get the nutrients he > needs > since he throws up so much. & nbsp; His ecezma is also so much better. > My > concern is now what to do. I am concerned about celiac disease. He has > all the noticiable symptoms. There are some which he cant' tell me if > he > has or not, like painful joints and such. I can just tell by those I > see > by dealing with him everyday. I also got on the internet and looked up > delayed gastric emptying and found out that the number one cause of it > is diabetes. My doctor says don't worry about if he throws-up a little > each day, he's growing (very little, a pound every couple of months). > Yeah-but > no one or daycare wants to keep a child who throws up 2-3 times a > day. & nbsp; > He wants to keep him on the steroid for six more months, he's been on > it > since March 2000, an wait and see what happens. This scares me to > death. > Plus, he is very moody, irritable, urinates constantly, I can never > get > his thirst quenched, he sleeps ALL THE TIME (YES! this can get old) > and > he screams at times and puts our hands on his legs to massage, and I > don't > know the reasons for any of this. I want him tested, don't I? How far > should > I push?</font> > <br><font size=-2>If & nbsp; anyone has any suggestions, answers, PLEASE > let me know! If you think I am overreacting,,please tell me. At this > pint, > I am desperate and I want my child to feel better. Thanks for your > help > ahead of time.</font> > <br><font size=-2> </font> > <br><font size=-2>sldavis@...</font></html> > > > > > > *********************** > This is a secular list. > *********************** > > > PLEASE do not post religious emails to the list. > > > -------------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 I am definetly at that point. I don't care what it is, I just want to know so I can treat it. Thanks for the encouragement! jacesjoggers@... wrote: > Dear , > > I would push as far as needed to get the test done. My little guy, had > the projectile vomitting when he was an infant, and around 3 months of age he > started with a cough, that just got progressively worse. The first ped said > to start him on jar food, because he wasnt growing, then he was diagnosed > with failure to thrive, this was after we changed peds. When he was 4 1/2 > months old, he was finally sweat tested, and although the test was positive, > and heartbreaking to hear, we finally had an answer to all the things going > on with him, is now 16 months old, and very healthy, he weighs about 26 > pounds, and gets his treatments 2-3 times a day, but he is doing wonderful > now that he is diagnosed and we have something to work with. > Hope all works out with your little boy, and hope all is well soon. > > , mommy of 4, , 15 with a much older mind, Caleb, 6 and a > kindergarten pro, finally, , 4 1/2 and the next famous artist, and > , 15months with CF and reflux and a beautiful smile and bright blue eyes > > *********************** > This is a secular list. > *********************** > > PLEASE do not post religious emails to the list. > > -------------------------------------------------- > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 That would be great! jacesjoggers@... wrote: > Hello , > > A very good friend of mine lives in the Houston area, he is 37 with cf. He > subscribes to Cystic-L, would you mind if I gave him your email address, > maybe he can be of help as to who you could contact at the Texas Childrens > Hospital. > > , mommy of 4, , 15 with a much older mind, Caleb, 6 and a > kindergarten pro, finally, , 4 1/2 and the next famous artist, and > , 15months with CF and reflux and a beautiful smile and bright blue eyes > > *********************** > This is a secular list. > *********************** > > PLEASE do not post religious emails to the list. > > -------------------------------------------------- > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 , does he taste salty to you?????? Re: Worried about CF I am definetly at that point. I don't care what it is, I just want to know so I can treat it. Thanks for the encouragement! jacesjoggers@... wrote: > Dear , > > I would push as far as needed to get the test done. My little guy, had > the projectile vomitting when he was an infant, and around 3 months of age he > started with a cough, that just got progressively worse. The first ped said > to start him on jar food, because he wasnt growing, then he was diagnosed > with failure to thrive, this was after we changed peds. When he was 4 1/2 > months old, he was finally sweat tested, and although the test was positive, > and heartbreaking to hear, we finally had an answer to all the things going > on with him, is now 16 months old, and very healthy, he weighs about 26 > pounds, and gets his treatments 2-3 times a day, but he is doing wonderful > now that he is diagnosed and we have something to work with. > Hope all works out with your little boy, and hope all is well soon. > > , mommy of 4, , 15 with a much older mind, Caleb, 6 and a > kindergarten pro, finally, , 4 1/2 and the next famous artist, and > , 15months with CF and reflux and a beautiful smile and bright blue eyes > > *********************** > This is a secular list. > *********************** > > PLEASE do not post religious emails to the list. > > -------------------------------------------------- > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ *********************** This is a secular list. *********************** PLEASE do not post religious emails to the list. -------------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. -------------------------------------------------- Our webpage is at http://www.eohio.net/malbright/cfparents.htm _________________________________________________ Post message: cfparentsegroups Subscribe: cfparents-subscribeegroups Unsubscribe: cfparents-unsubscribeegroups List owner: cfparents-owneregroups _________________________________________________ WE HAVE A CHAT PAGE!!! /chat/cfparents _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 Not at all!!!! Banks wrote: > , does he taste salty to you?????? > Re: Worried about CF > > I am definetly at that point. I don't care what it is, I just want to know so I > can treat it. Thanks for the encouragement! > > jacesjoggers@... wrote: > > > Dear , > > > > I would push as far as needed to get the test done. My little guy, had > > the projectile vomitting when he was an infant, and around 3 months of age he > > started with a cough, that just got progressively worse. The first ped said > > to start him on jar food, because he wasnt growing, then he was diagnosed > > with failure to thrive, this was after we changed peds. When he was 4 1/2 > > months old, he was finally sweat tested, and although the test was positive, > > and heartbreaking to hear, we finally had an answer to all the things going > > on with him, is now 16 months old, and very healthy, he weighs about 26 > > pounds, and gets his treatments 2-3 times a day, but he is doing wonderful > > now that he is diagnosed and we have something to work with. > > Hope all works out with your little boy, and hope all is well soon. > > > > , mommy of 4, , 15 with a much older mind, Caleb, 6 and a > > kindergarten pro, finally, , 4 1/2 and the next famous artist, and > > , 15months with CF and reflux and a beautiful smile and bright blue eyes > > > > *********************** > > This is a secular list. > > *********************** > > > > PLEASE do not post religious emails to the list. > > > > -------------------------------------------------- > > > > The opinions and information exchanged on this list should > > IN NO WAY > > be construed as medical advice. > > > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > > > -------------------------------------------------- > > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > > > _________________________________________________ > > Post message: cfparentsegroups > > Subscribe: cfparents-subscribeegroups > > Unsubscribe: cfparents-unsubscribeegroups > > List owner: cfparents-owneregroups > > _________________________________________________ > > > > WE HAVE A CHAT PAGE!!! > > /chat/cfparents > > _________________________________________________ > > *********************** > This is a secular list. > *********************** > > PLEASE do not post religious emails to the list. > > -------------------------------------------------- > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 > he does not have asthma in the traditional sense but the steroids > do work. what we did do is put him on coffee (take him off all forms of > caffeine this makes it work better) when he felt sick or threw up we gave > him just coffee he usually doesn't want to eat. > > *********************** > >Why coffee? What in the world does that do? So has he been on steroids very > much? > > > > PLEASE do not post religious emails to the list. > > > > > > -------------------------------------------------- > > > > > > The opinions and information exchanged on this list should > > IN NO WAY > > be construed as medical advice. > > > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > TREATMENTS. > > > > -------------------------------------------------- > > > > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > > > _________________________________________________ > > Post message: cfparentsegroups > > Subscribe: cfparents-subscribeegroups > > Unsubscribe: cfparents-unsubscribeegroups > > List owner: cfparents-owneregroups > > _________________________________________________ > > > > WE HAVE A CHAT PAGE!!! > > /chat/cfparents > > _________________________________________________ > > > > > > > > > *********************** > This is a secular list. > *********************** > > PLEASE do not post religious emails to the list. > > -------------------------------------------------- > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 then he probably doesnt have CF... what does everyone else think?? Re: Worried about CF > > I am definetly at that point. I don't care what it is, I just want to know so I > can treat it. Thanks for the encouragement! > > jacesjoggers@... wrote: > > > Dear , > > > > I would push as far as needed to get the test done. My little guy, had > > the projectile vomitting when he was an infant, and around 3 months of age he > > started with a cough, that just got progressively worse. The first ped said > > to start him on jar food, because he wasnt growing, then he was diagnosed > > with failure to thrive, this was after we changed peds. When he was 4 1/2 > > months old, he was finally sweat tested, and although the test was positive, > > and heartbreaking to hear, we finally had an answer to all the things going > > on with him, is now 16 months old, and very healthy, he weighs about 26 > > pounds, and gets his treatments 2-3 times a day, but he is doing wonderful > > now that he is diagnosed and we have something to work with. > > Hope all works out with your little boy, and hope all is well soon. > > > > , mommy of 4, , 15 with a much older mind, Caleb, 6 and a > > kindergarten pro, finally, , 4 1/2 and the next famous artist, and > > , 15months with CF and reflux and a beautiful smile and bright blue eyes > > > > *********************** > > This is a secular list. > > *********************** > > > > PLEASE do not post religious emails to the list. > > > > -------------------------------------------------- > > > > The opinions and information exchanged on this list should > > IN NO WAY > > be construed as medical advice. > > > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > > > -------------------------------------------------- > > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > > > _________________________________________________ > > Post message: cfparentsegroups > > Subscribe: cfparents-subscribeegroups > > Unsubscribe: cfparents-unsubscribeegroups > > List owner: cfparents-owneregroups > > _________________________________________________ > > > > WE HAVE A CHAT PAGE!!! > > /chat/cfparents > > _________________________________________________ > > *********************** > This is a secular list. > *********************** > > PLEASE do not post religious emails to the list. > > -------------------------------------------------- > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 The caretakers think he doesn't tast salty either. Do you have to in order to be CF? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 that is difently a huge part of CF... the saltly skin. if you would like me to tell you all about CF, i can.. just ask! Re: Worried about CF The caretakers think he doesn't tast salty either. Do you have to in order to be CF? *********************** This is a secular list. *********************** PLEASE do not post religious emails to the list. -------------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. -------------------------------------------------- Our webpage is at http://www.eohio.net/malbright/cfparents.htm _________________________________________________ Post message: cfparentsegroups Subscribe: cfparents-subscribeegroups Unsubscribe: cfparents-unsubscribeegroups List owner: cfparents-owneregroups _________________________________________________ WE HAVE A CHAT PAGE!!! /chat/cfparents _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 Go for it. I need all the help I can get Banks wrote: > that is difently a huge part of CF... the saltly skin. if you would like me to tell you all about CF, i can.. just ask! > Re: Worried about CF > > The caretakers think he doesn't tast salty either. Do you have to in order to be CF? > > > > *********************** > This is a secular list. > *********************** > > PLEASE do not post religious emails to the list. > > -------------------------------------------------- > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 He has not been on steroids sense we started the coffee,as far as using coffee we heard from a friend that it works just like the steroids, its a stimulant that is all the steroids are doing. I would not have tried but as he is an bronchi asthma my Dr. said he could never die during a attack. its just uncomfortable. Cherie deep in woods of Maine. > > > *********************** > > >Why coffee? What in the world does that do? So has he been on steroids very > > much? > > > > > > PLEASE do not post religious emails to the list. > > > > > > > > > -------------------------------------------------- > > > > > > Quote Link to comment Share on other sites More sharing options...
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