Guest guest Posted September 30, 1999 Report Share Posted September 30, 1999 Dear ; I am getting tired of just reading what yu been through. As foor his site hurting. It took weeks before that stopped. Hpefully now that you found a place their is hope that things will settle down. God girl you need a big break. Beatrix > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 1999 Report Share Posted September 30, 1999 Thank you Bea, I appreciate your support! YOU NEED A NEW KEYBOARD!!! Love ya, Re: [eosinophilic gastroenteritis] Update on Spencer > > > Dear ; > I am getting tired of just reading what yu been through. As foor his site > hurting. It took weeks before that stopped. Hpefully now that you > found a place their is hope that things will settle down. God girl you need > a big break. > Beatrix > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 1999 Report Share Posted September 30, 1999 , Boy, that sounds like alot to handle. I'm glad he is feeling better. It must be hard with hubby so far away., will you have help with moving and unpacking? Good luck on Nov. 14th, the time will fly by till then. Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 1999 Report Share Posted October 1, 1999 I am hoping that the local church will offer us some help.....hubby will be doing a lot of the moving stuff here. I will be pack.......once he gets the boxes. Boy, I sure hope that times fly by fast. I can't wait much longer than this. Love, Re: [eosinophilic gastroenteritis] Update on Spencer > From: Dcjatben@... > > > , > Boy, that sounds like alot to handle. I'm glad he is feeling better. It must > be hard with hubby so far away., will you have help with moving and > unpacking? Good luck on Nov. 14th, the time will fly by till then. > > Cathy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2000 Report Share Posted March 12, 2000 , Wow! I had no idea you were pregnant, congrats! And I must say I love the name you have picked out! ;*) I teach 3rd and 4th grade Sunday school here at LSU now, so I hardly get back to my home church, but someone asked me last week how all the kids I was always praying for on my " tummy troubles " list were doing. I'm glad I now have some type of report to give out. Good luck with everything and I hope Spencer's surgery is far enough away so the poor guy can get well enough! Kelsey ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2000 Report Share Posted March 12, 2000 , Wow! I had no idea you were pregnant, congrats! And I must say I love the name you have picked out! ;*) I teach 3rd and 4th grade Sunday school here at LSU now, so I hardly get back to my home church, but someone asked me last week how all the kids I was always praying for on my " tummy troubles " list were doing. I'm glad I now have some type of report to give out. Good luck with everything and I hope Spencer's surgery is far enough away so the poor guy can get well enough! Kelsey ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2000 Report Share Posted March 12, 2000 , Wow! I had no idea you were pregnant, congrats! And I must say I love the name you have picked out! ;*) I teach 3rd and 4th grade Sunday school here at LSU now, so I hardly get back to my home church, but someone asked me last week how all the kids I was always praying for on my " tummy troubles " list were doing. I'm glad I now have some type of report to give out. Good luck with everything and I hope Spencer's surgery is far enough away so the poor guy can get well enough! Kelsey ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2000 Report Share Posted March 12, 2000 Kelsey and Dawn, Thank you......and yes I am so excited about PINK and so is my hubby. He says he is not too sure if he is prepared to keep the boys away from his daughter! LOL! Trying to think very positive.....what do you all think? Should I go for what Dr. Putnam wants us to do with the new one? I really wanted to breastfeed. [eosinophilic gastroenteritis] Update on Spencer > > > > > > > > Well Hello everyone, > > > > We are back home for less than 24 hours for an appointment for me. It's > > been really crazy to say the least. > > > > Since it has been so long I will just give you all the update from the > last > > couple of weeks. Spencer just got out of the hospital from being there > for > > a couple of weeks. I took him into his surgeons office to look at his CVL > > site b/c it looked like it was infected. It has some puss that came out > of > > it. Well right there they admitted him and pulled his CVL the same day. > > They put him on Vanco and to prepare him for surgery. They did decide to > > move his G-tube and put in a J-tube and put in a new central line (We did > a > > MRI/MRV/MRA and found two veins left in his chest yeah!). Well he decided > > to get really sick and ended up on 4 times the amount of steroids, a picc > > line, and breathing treatment of two different drugs for about 5 days. We > > tried about three times to take him to surgery and all three times they > said > > he was too sick. So we are home now and surgery is scheduled for the 21st > > of this month. > > > > Dr. Putnam was acting a little quiet and distant this last hospital stay > and > > my husband finally found out why........he has been thinking pretty hard > > about Spencer and our new baby. > > > > First he wants us to seriously think about putting the new one directly on > > Elecare (as he believes this disease is genetic) so that we can by pass > some > > terrible times with ng tube and G-tubes and so forth. He told us what > ever > > we do, do not do the D*** Nissan on the new baby, it's for reflux only! > His > > words. > > > > He also has a theory about Spencer. Although Spencer seems to have > > Gastroparisis, CIP and so forth he thinks he has something called > " Visceral > > Hyperalagesis " (sp) in addition to the Eos's disease. He explained it > like > > this.....that Spencer experiences an extreme amount of pain when the gut > has > > to do something. In other words, when Spencer gets fed a bolus of Elecare > > it will make his stomach bigger (which is normal) but for him it causes an > > extreme amount of pain and because the brain has an impulse for pain in > the > > gut it tells the gut where ever it hurts to shut down. So, in essence, he > > mimic's a lot of disorders. How we will ever treat this, I have no idea. > > > > I have not looked this up yet on the web, but I think it is kinda > rare...but > > now sure. > > > > I will keep you posted though on how Spencer does with the surgery on the > > 21st. > > > > As for me........well, I am due on the 8th of August. I have seen the > doc's > > 3 times in Cinci and will deliver there at a hospital called Bethesda > North. > > I have had two ultrasounds so far. IT'S A GIRL!!!!! > > I am so excited and so is both Mike and Spencer. We are going to name her > > Kelsey Marie (Not sure on the spelling though). I am going to the high > risk > > clinic every two weeks and also am doing ultrasounds frequently. On the > > last ultrasound they found something called bright bowel. > > Interesting......it can signify Cystic Fibrosis, obviously bowel > disorders, > > blocks and so forth so we are keeping close eye on it. Please pray that > she > > will be okay. Other than that, physically, she looks very normal. > (Sharon, > > didn't Clayton have bright bowel???) > > > > I decided to do a C-section again.........on the 1st of August, unless she > > decides to come early of course. My tummy is getting big and I am > starting > > to really feel pregnant. > > > > In 7 weeks our lease is up in Michigan so we are going to pack everything > up > > and put it in storage. Mike is going to try to work out with his work to > > work three days in Michigan and two days in Ohio so we can keep the same > > insurance and also be with a company that is so understanding of Spencer's > > condition. I sure hope that this works out. We really want to get a > house > > by May, so hopefully that will work out too. I told Mike, if I have to > come > > back from the hospital to the RMD I will scream bloody murder! LOL! > > > > Well, that is about it in the Allred household......I will keep you > updated > > as things progress. > > > > > > > > > > > > ------------------------------------------------------------------------ > > PERFORM CPR ON YOUR APR! > > Get a NextCard Visa, in 30 seconds! Get rates as low as > > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > > Apply NOW! > > http://click.egroups.com/1/2121/4/_/474479/_/952918363/ > > ------------------------------------------------------------------------ > > > > > > > > > ------------------------------------------------------------------------ > PERFORM CPR ON YOUR APR! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click.egroups.com/1/2121/4/_/474479/_/952923242/ > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2000 Report Share Posted March 12, 2000 Hi , I have to agree with Dawn. I know that breastfeeding is the best thing for most babies. At least you would be able to pass on the natural immunities even if there is reason to stop later. You just give them a much better start. My first child was born with a total Hursprungs. It is worse I guess in girls and hers involved the whole colon. I was discouraged from breastfeeding because she developed Jaundice. She was allergic to everything. Milk , Soy, Meatbase, Nutramagen. If I had known then what I know now I would have insisted that they let me breastfeed. She would have had a much better chance of survival. As it was she died at 3 months after three surgeries and many complications. She would be 31 now so you know that was a long time ago and there have been so many advances. With all those allergies and other symptoms, I even wonder if she didn't have EG. My point here is that I have 4 more children. None of them have Hursprungs or Eg that I know of. My youngest is now 19. Who knows what causes one child to have problems and another one to be healthy. I can understand the Doctors concerns. My second child had full Barium studies before we left the hospital. I had some scary days too. When you have one child with a problem I think it is only natural to worry, but I got 4 healthy ones and I bet you will too. Maybe not 4. LOL. Stay positive. By the way congratulations on this new one..... I hope Spencer gets better soon and that his surgery goes well. Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2000 Report Share Posted March 12, 2000 Hope everything goes well for Spencer and the new baby. Some of us do have healthy children other than our children with EG or EE. Try to think positive. Plus, we were told that if we had a boy that our chances would be higher and maybe there is some truth to that since Mackenzie and Dakota are healthy. Congrats on a girl. Are you excited about all the pink and frilly things? Dawn Mommy to Dakota BJ-EG, Asthma, Reflux Mackenzie [eosinophilic gastroenteritis] Update on Spencer > > > Well Hello everyone, > > We are back home for less than 24 hours for an appointment for me. It's > been really crazy to say the least. > > Since it has been so long I will just give you all the update from the last > couple of weeks. Spencer just got out of the hospital from being there for > a couple of weeks. I took him into his surgeons office to look at his CVL > site b/c it looked like it was infected. It has some puss that came out of > it. Well right there they admitted him and pulled his CVL the same day. > They put him on Vanco and to prepare him for surgery. They did decide to > move his G-tube and put in a J-tube and put in a new central line (We did a > MRI/MRV/MRA and found two veins left in his chest yeah!). Well he decided > to get really sick and ended up on 4 times the amount of steroids, a picc > line, and breathing treatment of two different drugs for about 5 days. We > tried about three times to take him to surgery and all three times they said > he was too sick. So we are home now and surgery is scheduled for the 21st > of this month. > > Dr. Putnam was acting a little quiet and distant this last hospital stay and > my husband finally found out why........he has been thinking pretty hard > about Spencer and our new baby. > > First he wants us to seriously think about putting the new one directly on > Elecare (as he believes this disease is genetic) so that we can by pass some > terrible times with ng tube and G-tubes and so forth. He told us what ever > we do, do not do the D*** Nissan on the new baby, it's for reflux only! His > words. > > He also has a theory about Spencer. Although Spencer seems to have > Gastroparisis, CIP and so forth he thinks he has something called " Visceral > Hyperalagesis " (sp) in addition to the Eos's disease. He explained it like > this.....that Spencer experiences an extreme amount of pain when the gut has > to do something. In other words, when Spencer gets fed a bolus of Elecare > it will make his stomach bigger (which is normal) but for him it causes an > extreme amount of pain and because the brain has an impulse for pain in the > gut it tells the gut where ever it hurts to shut down. So, in essence, he > mimic's a lot of disorders. How we will ever treat this, I have no idea. > > I have not looked this up yet on the web, but I think it is kinda rare...but > now sure. > > I will keep you posted though on how Spencer does with the surgery on the > 21st. > > As for me........well, I am due on the 8th of August. I have seen the doc's > 3 times in Cinci and will deliver there at a hospital called Bethesda North. > I have had two ultrasounds so far. IT'S A GIRL!!!!! > I am so excited and so is both Mike and Spencer. We are going to name her > Kelsey Marie (Not sure on the spelling though). I am going to the high risk > clinic every two weeks and also am doing ultrasounds frequently. On the > last ultrasound they found something called bright bowel. > Interesting......it can signify Cystic Fibrosis, obviously bowel disorders, > blocks and so forth so we are keeping close eye on it. Please pray that she > will be okay. Other than that, physically, she looks very normal. (Sharon, > didn't Clayton have bright bowel???) > > I decided to do a C-section again.........on the 1st of August, unless she > decides to come early of course. My tummy is getting big and I am starting > to really feel pregnant. > > In 7 weeks our lease is up in Michigan so we are going to pack everything up > and put it in storage. Mike is going to try to work out with his work to > work three days in Michigan and two days in Ohio so we can keep the same > insurance and also be with a company that is so understanding of Spencer's > condition. I sure hope that this works out. We really want to get a house > by May, so hopefully that will work out too. I told Mike, if I have to come > back from the hospital to the RMD I will scream bloody murder! LOL! > > Well, that is about it in the Allred household......I will keep you updated > as things progress. > > > > > > ------------------------------------------------------------------------ > PERFORM CPR ON YOUR APR! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click.egroups.com/1/2121/4/_/474479/_/952918363/ > ------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2000 Report Share Posted March 12, 2000 Hope everything goes well for Spencer and the new baby. Some of us do have healthy children other than our children with EG or EE. Try to think positive. Plus, we were told that if we had a boy that our chances would be higher and maybe there is some truth to that since Mackenzie and Dakota are healthy. Congrats on a girl. Are you excited about all the pink and frilly things? Dawn Mommy to Dakota BJ-EG, Asthma, Reflux Mackenzie [eosinophilic gastroenteritis] Update on Spencer > > > Well Hello everyone, > > We are back home for less than 24 hours for an appointment for me. It's > been really crazy to say the least. > > Since it has been so long I will just give you all the update from the last > couple of weeks. Spencer just got out of the hospital from being there for > a couple of weeks. I took him into his surgeons office to look at his CVL > site b/c it looked like it was infected. It has some puss that came out of > it. Well right there they admitted him and pulled his CVL the same day. > They put him on Vanco and to prepare him for surgery. They did decide to > move his G-tube and put in a J-tube and put in a new central line (We did a > MRI/MRV/MRA and found two veins left in his chest yeah!). Well he decided > to get really sick and ended up on 4 times the amount of steroids, a picc > line, and breathing treatment of two different drugs for about 5 days. We > tried about three times to take him to surgery and all three times they said > he was too sick. So we are home now and surgery is scheduled for the 21st > of this month. > > Dr. Putnam was acting a little quiet and distant this last hospital stay and > my husband finally found out why........he has been thinking pretty hard > about Spencer and our new baby. > > First he wants us to seriously think about putting the new one directly on > Elecare (as he believes this disease is genetic) so that we can by pass some > terrible times with ng tube and G-tubes and so forth. He told us what ever > we do, do not do the D*** Nissan on the new baby, it's for reflux only! His > words. > > He also has a theory about Spencer. Although Spencer seems to have > Gastroparisis, CIP and so forth he thinks he has something called " Visceral > Hyperalagesis " (sp) in addition to the Eos's disease. He explained it like > this.....that Spencer experiences an extreme amount of pain when the gut has > to do something. In other words, when Spencer gets fed a bolus of Elecare > it will make his stomach bigger (which is normal) but for him it causes an > extreme amount of pain and because the brain has an impulse for pain in the > gut it tells the gut where ever it hurts to shut down. So, in essence, he > mimic's a lot of disorders. How we will ever treat this, I have no idea. > > I have not looked this up yet on the web, but I think it is kinda rare...but > now sure. > > I will keep you posted though on how Spencer does with the surgery on the > 21st. > > As for me........well, I am due on the 8th of August. I have seen the doc's > 3 times in Cinci and will deliver there at a hospital called Bethesda North. > I have had two ultrasounds so far. IT'S A GIRL!!!!! > I am so excited and so is both Mike and Spencer. We are going to name her > Kelsey Marie (Not sure on the spelling though). I am going to the high risk > clinic every two weeks and also am doing ultrasounds frequently. On the > last ultrasound they found something called bright bowel. > Interesting......it can signify Cystic Fibrosis, obviously bowel disorders, > blocks and so forth so we are keeping close eye on it. Please pray that she > will be okay. Other than that, physically, she looks very normal. (Sharon, > didn't Clayton have bright bowel???) > > I decided to do a C-section again.........on the 1st of August, unless she > decides to come early of course. My tummy is getting big and I am starting > to really feel pregnant. > > In 7 weeks our lease is up in Michigan so we are going to pack everything up > and put it in storage. Mike is going to try to work out with his work to > work three days in Michigan and two days in Ohio so we can keep the same > insurance and also be with a company that is so understanding of Spencer's > condition. I sure hope that this works out. We really want to get a house > by May, so hopefully that will work out too. I told Mike, if I have to come > back from the hospital to the RMD I will scream bloody murder! LOL! > > Well, that is about it in the Allred household......I will keep you updated > as things progress. > > > > > > ------------------------------------------------------------------------ > PERFORM CPR ON YOUR APR! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click.egroups.com/1/2121/4/_/474479/_/952918363/ > ------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2000 Report Share Posted March 12, 2000 Hope everything goes well for Spencer and the new baby. Some of us do have healthy children other than our children with EG or EE. Try to think positive. Plus, we were told that if we had a boy that our chances would be higher and maybe there is some truth to that since Mackenzie and Dakota are healthy. Congrats on a girl. Are you excited about all the pink and frilly things? Dawn Mommy to Dakota BJ-EG, Asthma, Reflux Mackenzie [eosinophilic gastroenteritis] Update on Spencer > > > Well Hello everyone, > > We are back home for less than 24 hours for an appointment for me. It's > been really crazy to say the least. > > Since it has been so long I will just give you all the update from the last > couple of weeks. Spencer just got out of the hospital from being there for > a couple of weeks. I took him into his surgeons office to look at his CVL > site b/c it looked like it was infected. It has some puss that came out of > it. Well right there they admitted him and pulled his CVL the same day. > They put him on Vanco and to prepare him for surgery. They did decide to > move his G-tube and put in a J-tube and put in a new central line (We did a > MRI/MRV/MRA and found two veins left in his chest yeah!). Well he decided > to get really sick and ended up on 4 times the amount of steroids, a picc > line, and breathing treatment of two different drugs for about 5 days. We > tried about three times to take him to surgery and all three times they said > he was too sick. So we are home now and surgery is scheduled for the 21st > of this month. > > Dr. Putnam was acting a little quiet and distant this last hospital stay and > my husband finally found out why........he has been thinking pretty hard > about Spencer and our new baby. > > First he wants us to seriously think about putting the new one directly on > Elecare (as he believes this disease is genetic) so that we can by pass some > terrible times with ng tube and G-tubes and so forth. He told us what ever > we do, do not do the D*** Nissan on the new baby, it's for reflux only! His > words. > > He also has a theory about Spencer. Although Spencer seems to have > Gastroparisis, CIP and so forth he thinks he has something called " Visceral > Hyperalagesis " (sp) in addition to the Eos's disease. He explained it like > this.....that Spencer experiences an extreme amount of pain when the gut has > to do something. In other words, when Spencer gets fed a bolus of Elecare > it will make his stomach bigger (which is normal) but for him it causes an > extreme amount of pain and because the brain has an impulse for pain in the > gut it tells the gut where ever it hurts to shut down. So, in essence, he > mimic's a lot of disorders. How we will ever treat this, I have no idea. > > I have not looked this up yet on the web, but I think it is kinda rare...but > now sure. > > I will keep you posted though on how Spencer does with the surgery on the > 21st. > > As for me........well, I am due on the 8th of August. I have seen the doc's > 3 times in Cinci and will deliver there at a hospital called Bethesda North. > I have had two ultrasounds so far. IT'S A GIRL!!!!! > I am so excited and so is both Mike and Spencer. We are going to name her > Kelsey Marie (Not sure on the spelling though). I am going to the high risk > clinic every two weeks and also am doing ultrasounds frequently. On the > last ultrasound they found something called bright bowel. > Interesting......it can signify Cystic Fibrosis, obviously bowel disorders, > blocks and so forth so we are keeping close eye on it. Please pray that she > will be okay. Other than that, physically, she looks very normal. (Sharon, > didn't Clayton have bright bowel???) > > I decided to do a C-section again.........on the 1st of August, unless she > decides to come early of course. My tummy is getting big and I am starting > to really feel pregnant. > > In 7 weeks our lease is up in Michigan so we are going to pack everything up > and put it in storage. Mike is going to try to work out with his work to > work three days in Michigan and two days in Ohio so we can keep the same > insurance and also be with a company that is so understanding of Spencer's > condition. I sure hope that this works out. We really want to get a house > by May, so hopefully that will work out too. I told Mike, if I have to come > back from the hospital to the RMD I will scream bloody murder! LOL! > > Well, that is about it in the Allred household......I will keep you updated > as things progress. > > > > > > ------------------------------------------------------------------------ > PERFORM CPR ON YOUR APR! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click.egroups.com/1/2121/4/_/474479/_/952918363/ > ------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2000 Report Share Posted March 12, 2000 I would give breastfeeding a chance. If she starts having problems then you can change to the Elecare soon. Even at Mackenzie's age (almost 4 months), I think she would be very easy to change her formula. I know it is very hard to think positive when you have been through so much with Spencer. Dawn [eosinophilic gastroenteritis] Update on Spencer > > > > > > > > > > > > > Well Hello everyone, > > > > > > We are back home for less than 24 hours for an appointment for me. It's > > > been really crazy to say the least. > > > > > > Since it has been so long I will just give you all the update from the > > last > > > couple of weeks. Spencer just got out of the hospital from being there > > for > > > a couple of weeks. I took him into his surgeons office to look at his > CVL > > > site b/c it looked like it was infected. It has some puss that came out > > of > > > it. Well right there they admitted him and pulled his CVL the same day. > > > They put him on Vanco and to prepare him for surgery. They did decide > to > > > move his G-tube and put in a J-tube and put in a new central line (We > did > > a > > > MRI/MRV/MRA and found two veins left in his chest yeah!). Well he > decided > > > to get really sick and ended up on 4 times the amount of steroids, a > picc > > > line, and breathing treatment of two different drugs for about 5 days. > We > > > tried about three times to take him to surgery and all three times they > > said > > > he was too sick. So we are home now and surgery is scheduled for the > 21st > > > of this month. > > > > > > Dr. Putnam was acting a little quiet and distant this last hospital stay > > and > > > my husband finally found out why........he has been thinking pretty hard > > > about Spencer and our new baby. > > > > > > First he wants us to seriously think about putting the new one directly > on > > > Elecare (as he believes this disease is genetic) so that we can by pass > > some > > > terrible times with ng tube and G-tubes and so forth. He told us what > > ever > > > we do, do not do the D*** Nissan on the new baby, it's for reflux only! > > His > > > words. > > > > > > He also has a theory about Spencer. Although Spencer seems to have > > > Gastroparisis, CIP and so forth he thinks he has something called > > " Visceral > > > Hyperalagesis " (sp) in addition to the Eos's disease. He explained it > > like > > > this.....that Spencer experiences an extreme amount of pain when the gut > > has > > > to do something. In other words, when Spencer gets fed a bolus of > Elecare > > > it will make his stomach bigger (which is normal) but for him it causes > an > > > extreme amount of pain and because the brain has an impulse for pain in > > the > > > gut it tells the gut where ever it hurts to shut down. So, in essence, > he > > > mimic's a lot of disorders. How we will ever treat this, I have no > idea. > > > > > > I have not looked this up yet on the web, but I think it is kinda > > rare...but > > > now sure. > > > > > > I will keep you posted though on how Spencer does with the surgery on > the > > > 21st. > > > > > > As for me........well, I am due on the 8th of August. I have seen the > > doc's > > > 3 times in Cinci and will deliver there at a hospital called Bethesda > > North. > > > I have had two ultrasounds so far. IT'S A GIRL!!!!! > > > I am so excited and so is both Mike and Spencer. We are going to name > her > > > Kelsey Marie (Not sure on the spelling though). I am going to the high > > risk > > > clinic every two weeks and also am doing ultrasounds frequently. On the > > > last ultrasound they found something called bright bowel. > > > Interesting......it can signify Cystic Fibrosis, obviously bowel > > disorders, > > > blocks and so forth so we are keeping close eye on it. Please pray that > > she > > > will be okay. Other than that, physically, she looks very normal. > > (Sharon, > > > didn't Clayton have bright bowel???) > > > > > > I decided to do a C-section again.........on the 1st of August, unless > she > > > decides to come early of course. My tummy is getting big and I am > > starting > > > to really feel pregnant. > > > > > > In 7 weeks our lease is up in Michigan so we are going to pack > everything > > up > > > and put it in storage. Mike is going to try to work out with his work > to > > > work three days in Michigan and two days in Ohio so we can keep the same > > > insurance and also be with a company that is so understanding of > Spencer's > > > condition. I sure hope that this works out. We really want to get a > > house > > > by May, so hopefully that will work out too. I told Mike, if I have to > > come > > > back from the hospital to the RMD I will scream bloody murder! LOL! > > > > > > Well, that is about it in the Allred household......I will keep you > > updated > > > as things progress. > > > > > > > > > > > > > > > > > > ------------------------------------------------------------------------ > > > PERFORM CPR ON YOUR APR! > > > Get a NextCard Visa, in 30 seconds! Get rates as low as > > > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > > > Apply NOW! > > > http://click.egroups.com/1/2121/4/_/474479/_/952918363/ > > > ------------------------------------------------------------------------ > > > > > > > > > > > > > > > ------------------------------------------------------------------------ > > PERFORM CPR ON YOUR APR! > > Get a NextCard Visa, in 30 seconds! Get rates as low as > > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > > Apply NOW! > > http://click.egroups.com/1/2121/4/_/474479/_/952923242/ > > ------------------------------------------------------------------------ > > > > > ------------------------------------------------------------------------ > DON'T HATE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click.egroups.com/1/2120/4/_/474479/_/952923963/ > ------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2000 Report Share Posted March 12, 2000 I definitely follow everyone else in saying that you should give breastfeeding a chance. I mean, isn't that what all the LLL people say? That breastmilk is one of the least allergenic items there is? It's funny this topic came up... we have been trying to get pregnant again. I didn't bf for many reasons. Of course, the c-section and the nightmare pyloric stenosis stuff didn't help much! But I would like to try this time, just in case the next child shares some of 's GI problems. I think it would be a good topic to discuss! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2000 Report Share Posted March 12, 2000 I definitely follow everyone else in saying that you should give breastfeeding a chance. I mean, isn't that what all the LLL people say? That breastmilk is one of the least allergenic items there is? It's funny this topic came up... we have been trying to get pregnant again. I didn't bf for many reasons. Of course, the c-section and the nightmare pyloric stenosis stuff didn't help much! But I would like to try this time, just in case the next child shares some of 's GI problems. I think it would be a good topic to discuss! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2000 Report Share Posted March 12, 2000 I definitely follow everyone else in saying that you should give breastfeeding a chance. I mean, isn't that what all the LLL people say? That breastmilk is one of the least allergenic items there is? It's funny this topic came up... we have been trying to get pregnant again. I didn't bf for many reasons. Of course, the c-section and the nightmare pyloric stenosis stuff didn't help much! But I would like to try this time, just in case the next child shares some of 's GI problems. I think it would be a good topic to discuss! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 Okay , did I miss something again. What about CBS? Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 That is really terrific. Boy you will have seen all sides of the news media won't you. When is the Movie coming out ? LOL..... I hope we will have enough notice on this one to let our families know and to be sure we have tapes for the VCR. Won't be able to bookmark this one.... I bookmarked the newspaper articles, but apparently they have taken down the first one. I should have copied it. I think it is in the archives here though. I have sent the links to several people with Eg that I have found on line recently. Thank you for letting your family be put in the spotlight. I am sure it will help a lot of people. Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 WOW ANDREA. The " hyperalgesia syndrome " is EXACTLY what I've been told about Kody too -- but I've been told it is probably a RESULT of the eos disease and not an additional independent problem. Did you point out to Dr. Putnam that the large majority of kids with this disease are MALE? I would have a little hope that your daughter may escape it just by being FEMALE. And by the way CONGRATULATIONS on that part. Producing a daughter was something I was never able to do! I expect we'll be in Cinci within the next couple of months. I'll be interested to see how the J-tube goes with Spencer; particularly as our surgeon decided not to do it for now with Kody. You know, Kody had another bleed right after the G-tube was moved so keep your eyes open with Spencer. ALSO ARE THEY GOING TO SURGICALLY CLOSE THE OLD SITE? Remember the problems we had with Kody's old site? I'd suggest they DO close it. We are getting about 100cc a day in Kody now, but it does hurt him every single time and he complains of nausea... but no vomiting (yet). They put Kody on Periactin first to try and calm the " hypersensitivity " that goes along with hyperalgesia. Dr. DiLorenzo recommended this and then another drug usually used for hypertension if the Periactin doesnt work. Please Email me your address again.. I still have a copule of article to send your way -- I'll let you know which day our story comes out on CBS okay? Steph. [eosinophilic gastroenteritis] Update on Spencer > > >Well Hello everyone, > >We are back home for less than 24 hours for an appointment for me. It's >been really crazy to say the least. > >Since it has been so long I will just give you all the update from the last >couple of weeks. Spencer just got out of the hospital from being there for >a couple of weeks. I took him into his surgeons office to look at his CVL >site b/c it looked like it was infected. It has some puss that came out of >it. Well right there they admitted him and pulled his CVL the same day. >They put him on Vanco and to prepare him for surgery. They did decide to >move his G-tube and put in a J-tube and put in a new central line (We did a >MRI/MRV/MRA and found two veins left in his chest yeah!). Well he decided >to get really sick and ended up on 4 times the amount of steroids, a picc >line, and breathing treatment of two different drugs for about 5 days. We >tried about three times to take him to surgery and all three times they said >he was too sick. So we are home now and surgery is scheduled for the 21st >of this month. > >Dr. Putnam was acting a little quiet and distant this last hospital stay and >my husband finally found out why........he has been thinking pretty hard >about Spencer and our new baby. > >First he wants us to seriously think about putting the new one directly on >Elecare (as he believes this disease is genetic) so that we can by pass some >terrible times with ng tube and G-tubes and so forth. He told us what ever >we do, do not do the D*** Nissan on the new baby, it's for reflux only! His >words. > >He also has a theory about Spencer. Although Spencer seems to have >Gastroparisis, CIP and so forth he thinks he has something called " Visceral >Hyperalagesis " (sp) in addition to the Eos's disease. He explained it like >this.....that Spencer experiences an extreme amount of pain when the gut has >to do something. In other words, when Spencer gets fed a bolus of Elecare >it will make his stomach bigger (which is normal) but for him it causes an >extreme amount of pain and because the brain has an impulse for pain in the >gut it tells the gut where ever it hurts to shut down. So, in essence, he >mimic's a lot of disorders. How we will ever treat this, I have no idea. > >I have not looked this up yet on the web, but I think it is kinda rare...but >now sure. > >I will keep you posted though on how Spencer does with the surgery on the >21st. > >As for me........well, I am due on the 8th of August. I have seen the doc's >3 times in Cinci and will deliver there at a hospital called Bethesda North. >I have had two ultrasounds so far. IT'S A GIRL!!!!! >I am so excited and so is both Mike and Spencer. We are going to name her >Kelsey Marie (Not sure on the spelling though). I am going to the high risk >clinic every two weeks and also am doing ultrasounds frequently. On the >last ultrasound they found something called bright bowel. >Interesting......it can signify Cystic Fibrosis, obviously bowel disorders, >blocks and so forth so we are keeping close eye on it. Please pray that she >will be okay. Other than that, physically, she looks very normal. (Sharon, >didn't Clayton have bright bowel???) > >I decided to do a C-section again.........on the 1st of August, unless she >decides to come early of course. My tummy is getting big and I am starting >to really feel pregnant. > >In 7 weeks our lease is up in Michigan so we are going to pack everything up >and put it in storage. Mike is going to try to work out with his work to >work three days in Michigan and two days in Ohio so we can keep the same >insurance and also be with a company that is so understanding of Spencer's >condition. I sure hope that this works out. We really want to get a house >by May, so hopefully that will work out too. I told Mike, if I have to come >back from the hospital to the RMD I will scream bloody murder! LOL! > >Well, that is about it in the Allred household......I will keep you updated >as things progress. > > > > > >------------------------------------------------------------------------ >PERFORM CPR ON YOUR APR! >Get a NextCard Visa, in 30 seconds! Get rates as low as >0.0% Intro or 9.9% Fixed APR and no hidden fees. >Apply NOW! >http://click.egroups.com/1/2121/4/_/474479/_/952918363/ >------------------------------------------------------------------------ > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 , I also agree with breastfeeding first, and then when you begin to use formula, just use Elecare instead of the 'normal' formulas. You can always use that to fall back on and keep things stable. If she is able to go on foods without problems, then you just stop using it. If she isnt able to go to foods, then you have a child who will DRINK the formula --- this would not shut any doors for her at all and would just be a safety net. I'm holding out hope that she will be " healthy " and normal and not have the Kody-Spencer Syndrome - STeph. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 LOL sorry, Judy. CBS news is doing a story on us, originally will air on " The Early Show " with Gumbel. I'll post the date when they tell me. Steph. Re: [eosinophilic gastroenteritis] Update on Spencer > > >Okay , did I miss something again. What about CBS? >Judy > > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0% >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! >http://click.egroups.com/1/937/4/_/474479/_/952947935/ >------------------------------------------------------------------------ > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 Judy, I'll put the first article on our webpage and send you the link. Yes, I'll give as much warning as they give me... most of us don't watch t.v. in the mornings and hte VCRs will have to be set. Gotta run -- Kody has a site infection (he doesnt get these often, but the central line exit site is bright red and pus is oozing- YUK). I'm going to fight to NOT admit him this time. Steph. Re: [eosinophilic gastroenteritis] Update on Spencer > > >That is really terrific. Boy you will have seen all sides of the news media >won't you. When is the Movie coming out ? LOL..... > >I hope we will have enough notice on this one to let our families know and >to be sure we have tapes for the VCR. Won't be able to bookmark this >one.... > >I bookmarked the newspaper articles, but apparently they have taken down the >first one. I should have copied it. I think it is in the archives here >though. I have sent the links to several people with Eg that I have found >on line recently. > >Thank you for letting your family be put in the spotlight. I am sure it >will help a lot of people. >Judy > > > >------------------------------------------------------------------------ >PERFORM CPR ON YOUR APR! >Get a NextCard Visa, in 30 seconds! Get rates as low as >0.0% Intro or 9.9% Fixed APR and no hidden fees. >Apply NOW! >http://click.egroups.com/1/2121/4/_/474479/_/952949198/ >------------------------------------------------------------------------ > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 Steph, Dr. Putnam thinks that Spencer has Hyperalgesia from the vegas nerve getting damaged. He said that the vegas nerve has a lot to do with pain response. [eosinophilic gastroenteritis] Update on Spencer > > > > > > > >Well Hello everyone, > > > >We are back home for less than 24 hours for an appointment for me. It's > >been really crazy to say the least. > > > >Since it has been so long I will just give you all the update from the last > >couple of weeks. Spencer just got out of the hospital from being there for > >a couple of weeks. I took him into his surgeons office to look at his CVL > >site b/c it looked like it was infected. It has some puss that came out of > >it. Well right there they admitted him and pulled his CVL the same day. > >They put him on Vanco and to prepare him for surgery. They did decide to > >move his G-tube and put in a J-tube and put in a new central line (We did a > >MRI/MRV/MRA and found two veins left in his chest yeah!). Well he decided > >to get really sick and ended up on 4 times the amount of steroids, a picc > >line, and breathing treatment of two different drugs for about 5 days. We > >tried about three times to take him to surgery and all three times they > said > >he was too sick. So we are home now and surgery is scheduled for the 21st > >of this month. > > > >Dr. Putnam was acting a little quiet and distant this last hospital stay > and > >my husband finally found out why........he has been thinking pretty hard > >about Spencer and our new baby. > > > >First he wants us to seriously think about putting the new one directly on > >Elecare (as he believes this disease is genetic) so that we can by pass > some > >terrible times with ng tube and G-tubes and so forth. He told us what ever > >we do, do not do the D*** Nissan on the new baby, it's for reflux only! > His > >words. > > > >He also has a theory about Spencer. Although Spencer seems to have > >Gastroparisis, CIP and so forth he thinks he has something called " Visceral > >Hyperalagesis " (sp) in addition to the Eos's disease. He explained it > like > >this.....that Spencer experiences an extreme amount of pain when the gut > has > >to do something. In other words, when Spencer gets fed a bolus of Elecare > >it will make his stomach bigger (which is normal) but for him it causes an > >extreme amount of pain and because the brain has an impulse for pain in the > >gut it tells the gut where ever it hurts to shut down. So, in essence, he > >mimic's a lot of disorders. How we will ever treat this, I have no idea. > > > >I have not looked this up yet on the web, but I think it is kinda > rare...but > >now sure. > > > >I will keep you posted though on how Spencer does with the surgery on the > >21st. > > > >As for me........well, I am due on the 8th of August. I have seen the > doc's > >3 times in Cinci and will deliver there at a hospital called Bethesda > North. > >I have had two ultrasounds so far. IT'S A GIRL!!!!! > >I am so excited and so is both Mike and Spencer. We are going to name her > >Kelsey Marie (Not sure on the spelling though). I am going to the high > risk > >clinic every two weeks and also am doing ultrasounds frequently. On the > >last ultrasound they found something called bright bowel. > >Interesting......it can signify Cystic Fibrosis, obviously bowel disorders, > >blocks and so forth so we are keeping close eye on it. Please pray that > she > >will be okay. Other than that, physically, she looks very normal. (Sharon, > >didn't Clayton have bright bowel???) > > > >I decided to do a C-section again.........on the 1st of August, unless she > >decides to come early of course. My tummy is getting big and I am starting > >to really feel pregnant. > > > >In 7 weeks our lease is up in Michigan so we are going to pack everything > up > >and put it in storage. Mike is going to try to work out with his work to > >work three days in Michigan and two days in Ohio so we can keep the same > >insurance and also be with a company that is so understanding of Spencer's > >condition. I sure hope that this works out. We really want to get a house > >by May, so hopefully that will work out too. I told Mike, if I have to > come > >back from the hospital to the RMD I will scream bloody murder! LOL! > > > >Well, that is about it in the Allred household......I will keep you updated > >as things progress. > > > > > > > > > > > >------------------------------------------------------------------------ > >PERFORM CPR ON YOUR APR! > >Get a NextCard Visa, in 30 seconds! Get rates as low as > >0.0% Intro or 9.9% Fixed APR and no hidden fees. > >Apply NOW! > >http://click.egroups.com/1/2121/4/_/474479/_/952918363/ > >------------------------------------------------------------------------ > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 , What is Hyperalgesia? Dawn [eosinophilic gastroenteritis] Update on Spencer > > > > > > > > > > > > >Well Hello everyone, > > > > > >We are back home for less than 24 hours for an appointment for me. It's > > >been really crazy to say the least. > > > > > >Since it has been so long I will just give you all the update from the > last > > >couple of weeks. Spencer just got out of the hospital from being there > for > > >a couple of weeks. I took him into his surgeons office to look at his > CVL > > >site b/c it looked like it was infected. It has some puss that came out > of > > >it. Well right there they admitted him and pulled his CVL the same day. > > >They put him on Vanco and to prepare him for surgery. They did decide to > > >move his G-tube and put in a J-tube and put in a new central line (We did > a > > >MRI/MRV/MRA and found two veins left in his chest yeah!). Well he > decided > > >to get really sick and ended up on 4 times the amount of steroids, a picc > > >line, and breathing treatment of two different drugs for about 5 days. > We > > >tried about three times to take him to surgery and all three times they > > said > > >he was too sick. So we are home now and surgery is scheduled for the > 21st > > >of this month. > > > > > >Dr. Putnam was acting a little quiet and distant this last hospital stay > > and > > >my husband finally found out why........he has been thinking pretty hard > > >about Spencer and our new baby. > > > > > >First he wants us to seriously think about putting the new one directly > on > > >Elecare (as he believes this disease is genetic) so that we can by pass > > some > > >terrible times with ng tube and G-tubes and so forth. He told us what > ever > > >we do, do not do the D*** Nissan on the new baby, it's for reflux only! > > His > > >words. > > > > > >He also has a theory about Spencer. Although Spencer seems to have > > >Gastroparisis, CIP and so forth he thinks he has something called > " Visceral > > >Hyperalagesis " (sp) in addition to the Eos's disease. He explained it > > like > > >this.....that Spencer experiences an extreme amount of pain when the gut > > has > > >to do something. In other words, when Spencer gets fed a bolus of > Elecare > > >it will make his stomach bigger (which is normal) but for him it causes > an > > >extreme amount of pain and because the brain has an impulse for pain in > the > > >gut it tells the gut where ever it hurts to shut down. So, in essence, > he > > >mimic's a lot of disorders. How we will ever treat this, I have no idea. > > > > > >I have not looked this up yet on the web, but I think it is kinda > > rare...but > > >now sure. > > > > > >I will keep you posted though on how Spencer does with the surgery on the > > >21st. > > > > > >As for me........well, I am due on the 8th of August. I have seen the > > doc's > > >3 times in Cinci and will deliver there at a hospital called Bethesda > > North. > > >I have had two ultrasounds so far. IT'S A GIRL!!!!! > > >I am so excited and so is both Mike and Spencer. We are going to name > her > > >Kelsey Marie (Not sure on the spelling though). I am going to the high > > risk > > >clinic every two weeks and also am doing ultrasounds frequently. On the > > >last ultrasound they found something called bright bowel. > > >Interesting......it can signify Cystic Fibrosis, obviously bowel > disorders, > > >blocks and so forth so we are keeping close eye on it. Please pray that > > she > > >will be okay. Other than that, physically, she looks very normal. > (Sharon, > > >didn't Clayton have bright bowel???) > > > > > >I decided to do a C-section again.........on the 1st of August, unless > she > > >decides to come early of course. My tummy is getting big and I am > starting > > >to really feel pregnant. > > > > > >In 7 weeks our lease is up in Michigan so we are going to pack everything > > up > > >and put it in storage. Mike is going to try to work out with his work to > > >work three days in Michigan and two days in Ohio so we can keep the same > > > >insurance and also be with a company that is so understanding of > Spencer's > > >condition. I sure hope that this works out. We really want to get a > house > > >by May, so hopefully that will work out too. I told Mike, if I have to > > come > > >back from the hospital to the RMD I will scream bloody murder! LOL! > > > > > >Well, that is about it in the Allred household......I will keep you > updated > > >as things progress. > > > > > > > > > > > > > > > > > >------------------------------------------------------------------------ > > >PERFORM CPR ON YOUR APR! > > >Get a NextCard Visa, in 30 seconds! Get rates as low as > > >0.0% Intro or 9.9% Fixed APR and no hidden fees. > > >Apply NOW! > > >http://click.egroups.com/1/2121/4/_/474479/_/952918363/ > > >------------------------------------------------------------------------ > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
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