Guest guest Posted August 5, 1998 Report Share Posted August 5, 1998 In a message dated 98-08-05 22:01:58 EDT, you write: << Saulumedral (sp sounds like it)was the name of it. >> Solumedrol. Lynda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 1998 Report Share Posted August 5, 1998 Are you taking to a military hospital or do you use CHAMPUS/TRICARE and seek civilian care? Any chance of getting out of town to see a different specialist? Sorry to hear little is having such a tough time of it. Lynda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 1998 Report Share Posted August 5, 1998 How much of the steroids does he take. For my son it took a long period of IV steroids to get him on the upward swing. Saulumedral (sp sounds like it)was the name of it. ---------- > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Update on > Date: Wednesday, August 05, 1998 10:01 PM > > > > Hi, I am sad to report is on a bad downhill slope. Despite the > Prednisone, he is in constant pain and stooling constantly (11 times > today). He is also getting back to that point at which he doesn't care to > eat for the pain it causes afterward. He has also lost 3 lbs. We are SO > dis-satisfied with the care he is receiving. takes 7 different meds > now and he just seems to keep wanting to add more and more. The steroids > seem to help for a week or two then they don't seem to make a difference. > It seems now that everything he eats irritates him, even things that used > to be ok, like hamburger and potatoes. We go back to see the GI doc on > Monday the 10th but I put a call in to him today but he was already gone. > Today was in such pain that he was in tears and I know with his pain > tolerance it has to be really bad. Tomorrow when he calls, I am not quite > sure what to say but something has to be done. He keeps wanting us to > believe this magic miracle is going to happen in the next few months but > the truth is nothing is getting better. He keeps telling us that it has to > get really bad before it gets better but I just can't see how he can keep a > 2-1/2 year old in daily pain. > Dawn > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 1998 Report Share Posted August 5, 1998 takes Prednisone, 5cc a day, 15 mg ---------- To: eosinophilic gastroenteritis (AT) onelist (DOT) com Subject: [eosinophilic gastroenteritis] Re: Update on Date: Wednesday, August 05, 1998 8:55 PM How much of the steroids does he take. For my son it took a long period of IV steroids to get him on the upward swing. Saulumedral (sp sounds like it)was the name of it. ---------- > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Update on > Date: Wednesday, August 05, 1998 10:01 PM > > > > Hi, I am sad to report is on a bad downhill slope. Despite the > Prednisone, he is in constant pain and stooling constantly (11 times > today). He is also getting back to that point at which he doesn't care to > eat for the pain it causes afterward. He has also lost 3 lbs. We are SO > dis-satisfied with the care he is receiving. takes 7 different meds > now and he just seems to keep wanting to add more and more. The steroids > seem to help for a week or two then they don't seem to make a difference. > It seems now that everything he eats irritates him, even things that used > to be ok, like hamburger and potatoes. We go back to see the GI doc on > Monday the 10th but I put a call in to him today but he was already gone. > Today was in such pain that he was in tears and I know with his pain > tolerance it has to be really bad. Tomorrow when he calls, I am not quite > sure what to say but something has to be done. He keeps wanting us to > believe this magic miracle is going to happen in the next few months but > the truth is nothing is getting better. He keeps telling us that it has to > get really bad before it gets better but I just can't see how he can keep a > 2-1/2 year old in daily pain. > Dawn > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1998 Report Share Posted August 6, 1998 We had Tricare but hated it so we have Champus now and see civilians all except for 's pediatrician who is wonderful. We would LOVE to see someone else but there is really no one around. I guess our only option is to travel far. The closest is St. Louis or Denver, both about 6 hours away and my only reserve about that is that even if we see them, we can't follow up with them every 2 weeks like we have to with our GI. We applied for a compassionate reassignment because even right now, we travel 2-1/2 hours to Kansas City to see the GI and Pulmonologist but it was denied. So much for the Army taking care of its families. It has made me a bitter person toward the Army. Dawn ---------- > From: RRA4U@... > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: Update on > Date: Wednesday, August 05, 1998 10:14 PM > > > > Are you taking to a military hospital or do you use CHAMPUS/TRICARE and > seek civilian care? Any chance of getting out of town to see a different > specialist? > > Sorry to hear little is having such a tough time of it. > > Lynda > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1998 Report Share Posted August 6, 1998 thanks ---------- > From: RRA4U@... > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: Update on > Date: Wednesday, August 05, 1998 11:10 PM > > > > In a message dated 98-08-05 22:01:58 EDT, you write: > > << Saulumedral (sp sounds like > it)was the name of it. >> > > > Solumedrol. > > Lynda > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1998 Report Share Posted August 6, 1998 I have to respond to this because it kinda applies to what we were going through 1.5 months ago. We were getting terrible care for Spencer in Utah and here we are at the Mc house at CHP in Pittsburgh PA for 6 months to get him under control. You may just have to go somewhere far to find a really good doctor. I defnatley did. I almost went as far as I could across the U.S. Back East there are a lot of great doc's. Where are you from? ---------- > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: Update on > Date: Thursday, August 06, 1998 7:47 AM > > > > We had Tricare but hated it so we have Champus now and see civilians all > except for 's pediatrician who is wonderful. We would LOVE to see > someone else but there is really no one around. I guess our only option is > to travel far. The closest is St. Louis or Denver, both about 6 hours away > and my only reserve about that is that even if we see them, we can't follow > up with them every 2 weeks like we have to with our GI. We applied for a > compassionate reassignment because even right now, we travel 2-1/2 hours to > Kansas City to see the GI and Pulmonologist but it was denied. So much for > the Army taking care of its families. It has made me a bitter person > toward the Army. > Dawn > > m > > ---------- > > From: RRA4U@... > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > > Subject: [eosinophilic gastroenteritis] Re: Update on > > Date: Wednesday, August 05, 1998 10:14 PM > > > > > > > > Are you taking to a military hospital or do you use CHAMPUS/TRICARE > and > > seek civilian care? Any chance of getting out of town to see a different > > specialist? > > > > Sorry to hear little is having such a tough time of it. > > > > Lynda > > > > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1998 Report Share Posted August 6, 1998 Come out to Pittsburgh PA and see Dr. Putnam. He is wonderful. I guarentee he will get your childs condition under control. Do you want more info? ---------- > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: Update on > Date: Thursday, August 06, 1998 12:47 PM > > > > We are in Kansas. > > ---------- > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: Update on > Date: Thursday, August 06, 1998 10:37 AM > > I have to respond to this because it kinda applies to what we were going > through 1.5 months ago. We were getting terrible care for Spencer in Utah > and here we are at the Mc house at CHP in Pittsburgh PA for 6 > months to get him under control. You may just have to go somewhere far to > find a really good doctor. I defnatley did. I almost went as far as I > could across the U.S. Back East there are a lot of great doc's. Where are > you from? > > > ---------- > > > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > > Subject: [eosinophilic gastroenteritis] Re: Update on > > Date: Thursday, August 06, 1998 7:47 AM > > > > > > > > We had Tricare but hated it so we have Champus now and see civilians all > > except for 's pediatrician who is wonderful. We would LOVE to see > > someone else but there is really no one around. I guess our only option > is > > to travel far. The closest is St. Louis or Denver, both about 6 hours > away > > and my only reserve about that is that even if we see them, we can't > follow > > up with them every 2 weeks like we have to with our GI. We applied for a > > compassionate reassignment because even right now, we travel 2-1/2 hours > to > > Kansas City to see the GI and Pulmonologist but it was denied. So much > for > > the Army taking care of its families. It has made me a bitter person > > toward the Army. > > Dawn > > > > m > > > > ---------- > > > From: RRA4U@... > > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > > > Subject: [eosinophilic gastroenteritis] Re: Update on > > > Date: Wednesday, August 05, 1998 10:14 PM > > > > > > > > > > > > Are you taking to a military hospital or do you use > CHAMPUS/TRICARE > > and > > > seek civilian care? Any chance of getting out of town to see a > different > > > specialist? > > > > > > Sorry to hear little is having such a tough time of it. > > > > > > Lynda > > > > > > > ------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1998 Report Share Posted August 6, 1998 We are in Kansas. ---------- To: eosinophilic gastroenteritis (AT) onelist (DOT) com Subject: [eosinophilic gastroenteritis] Re: Update on Date: Thursday, August 06, 1998 10:37 AM I have to respond to this because it kinda applies to what we were going through 1.5 months ago. We were getting terrible care for Spencer in Utah and here we are at the Mc house at CHP in Pittsburgh PA for 6 months to get him under control. You may just have to go somewhere far to find a really good doctor. I defnatley did. I almost went as far as I could across the U.S. Back East there are a lot of great doc's. Where are you from? ---------- > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: Update on > Date: Thursday, August 06, 1998 7:47 AM > > > > We had Tricare but hated it so we have Champus now and see civilians all > except for 's pediatrician who is wonderful. We would LOVE to see > someone else but there is really no one around. I guess our only option is > to travel far. The closest is St. Louis or Denver, both about 6 hours away > and my only reserve about that is that even if we see them, we can't follow > up with them every 2 weeks like we have to with our GI. We applied for a > compassionate reassignment because even right now, we travel 2-1/2 hours to > Kansas City to see the GI and Pulmonologist but it was denied. So much for > the Army taking care of its families. It has made me a bitter person > toward the Army. > Dawn > > m > > ---------- > > From: RRA4U@... > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > > Subject: [eosinophilic gastroenteritis] Re: Update on > > Date: Wednesday, August 05, 1998 10:14 PM > > > > > > > > Are you taking to a military hospital or do you use CHAMPUS/TRICARE > and > > seek civilian care? Any chance of getting out of town to see a different > > specialist? > > > > Sorry to hear little is having such a tough time of it. > > > > Lynda > > > > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1998 Report Share Posted August 6, 1998 PLEASE! Also, did anyone help with the expense of going out of state? ---------- To: eosinophilic gastroenteritis (AT) onelist (DOT) com Subject: [eosinophilic gastroenteritis] Re: Update on Date: Thursday, August 06, 1998 11:36 AM Come out to Pittsburgh PA and see Dr. Putnam. He is wonderful. I guarentee he will get your childs condition under control. Do you want more info? ---------- > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: Update on > Date: Thursday, August 06, 1998 12:47 PM > > > > We are in Kansas. > > ---------- > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: Update on > Date: Thursday, August 06, 1998 10:37 AM > > I have to respond to this because it kinda applies to what we were going > through 1.5 months ago. We were getting terrible care for Spencer in Utah > and here we are at the Mc house at CHP in Pittsburgh PA for 6 > months to get him under control. You may just have to go somewhere far to > find a really good doctor. I defnatley did. I almost went as far as I > could across the U.S. Back East there are a lot of great doc's. Where are > you from? > > > ---------- > > > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > > Subject: [eosinophilic gastroenteritis] Re: Update on > > Date: Thursday, August 06, 1998 7:47 AM > > > > > > > > We had Tricare but hated it so we have Champus now and see civilians all > > except for 's pediatrician who is wonderful. We would LOVE to see > > someone else but there is really no one around. I guess our only option > is > > to travel far. The closest is St. Louis or Denver, both about 6 hours > away > > and my only reserve about that is that even if we see them, we can't > follow > > up with them every 2 weeks like we have to with our GI. We applied for a > > compassionate reassignment because even right now, we travel 2-1/2 hours > to > > Kansas City to see the GI and Pulmonologist but it was denied. So much > for > > the Army taking care of its families. It has made me a bitter person > > toward the Army. > > Dawn > > > > m > > > > ---------- > > > From: RRA4U@... > > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > > > Subject: [eosinophilic gastroenteritis] Re: Update on > > > Date: Wednesday, August 05, 1998 10:14 PM > > > > > > > > > > > > Are you taking to a military hospital or do you use > CHAMPUS/TRICARE > > and > > > seek civilian care? Any chance of getting out of town to see a > different > > > specialist? > > > > > > Sorry to hear little is having such a tough time of it. > > > > > > Lynda > > > > > > > ------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1998 Report Share Posted August 6, 1998 Hi Dawn, What GI doc do you see in Kansas City? Glenda ---------- > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: Update on > Date: Thursday, August 06, 1998 6:47 AM > > > > We had Tricare but hated it so we have Champus now and see civilians all > except for 's pediatrician who is wonderful. We would LOVE to see > someone else but there is really no one around. I guess our only option is > to travel far. The closest is St. Louis or Denver, both about 6 hours away > and my only reserve about that is that even if we see them, we can't follow > up with them every 2 weeks like we have to with our GI. We applied for a > compassionate reassignment because even right now, we travel 2-1/2 hours to > Kansas City to see the GI and Pulmonologist but it was denied. So much for > the Army taking care of its families. It has made me a bitter person > toward the Army. > Dawn > > > > ---------- > > From: RRA4U@... > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > > Subject: [eosinophilic gastroenteritis] Re: Update on > > Date: Wednesday, August 05, 1998 10:14 PM > > > > > > > > Are you taking to a military hospital or do you use CHAMPUS/TRICARE > and > > seek civilian care? Any chance of getting out of town to see a different > > specialist? > > > > Sorry to hear little is having such a tough time of it. > > > > Lynda > > > > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1998 Report Share Posted August 6, 1998 Dr Friesen, it was you, not Lynda(sorry Lynda) that I wanted to ask who you saw? Dawn ---------- > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: Update on > Date: Thursday, August 06, 1998 12:51 PM > > > > Hi Dawn, > > What GI doc do you see in Kansas City? > > Glenda > > ---------- > > > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > > Subject: [eosinophilic gastroenteritis] Re: Update on > > Date: Thursday, August 06, 1998 6:47 AM > > > > > > > > We had Tricare but hated it so we have Champus now and see civilians all > > except for 's pediatrician who is wonderful. We would LOVE to see > > someone else but there is really no one around. I guess our only option > is > > to travel far. The closest is St. Louis or Denver, both about 6 hours > away > > and my only reserve about that is that even if we see them, we can't > follow > > up with them every 2 weeks like we have to with our GI. We applied for a > > compassionate reassignment because even right now, we travel 2-1/2 hours > to > > Kansas City to see the GI and Pulmonologist but it was denied. So much > for > > the Army taking care of its families. It has made me a bitter person > > toward the Army. > > Dawn > > > > > > > > ---------- > > > From: RRA4U@... > > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > > > Subject: [eosinophilic gastroenteritis] Re: Update on > > > Date: Wednesday, August 05, 1998 10:14 PM > > > > > > > > > > > > Are you taking to a military hospital or do you use > CHAMPUS/TRICARE > > and > > > seek civilian care? Any chance of getting out of town to see a > different > > > specialist? > > > > > > Sorry to hear little is having such a tough time of it. > > > > > > Lynda > > > > > > > ------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1998 Report Share Posted August 6, 1998 In a message dated 98-08-06 07:34:47 EDT, you write: << So much for the Army taking care of its families. It has made me a bitter person toward the Army. >> I also opted out of military health care and into CHAMPUS just so I could have more choices--since we weren't near a one of the big military medical centers. Now that my husband recently retired he has health insurance from his new employer so we have even better coverage (read: access to care!) My husband still doesn't understand why I insist on having him opt for the extra coverage (which he does have to pay for) -but then again, he hasn't been the one to have to get the non-availability statements, the delayed payment of claims, the aggravations of dealing with CHAMPUS fiscal intermediaries, etc. etc. etc. All of that nonsense had been my job! Something tells me you should try to the army docs to support your being transported to Walter for a consultation. Or, would it be possible for the post hospital (if there is one) to try to set some kind of phone consult up. I can't believe they will not give you a compassionate duty assignment. Do you have enrolled in the military's exceptional family member program? And as far as transportation costs and whatever, there are groups called Angel Wings or something like that which is composed of volunteer pilots who are willing to transport sick kids and others for care they can't access easily or can't afford. I know you have your hands full, but something tells me that with your assertiveness you will be able to get a consult from out of state. I wish I knew more about this stuff but I can tell you that one time I talked with Dr. Liacouras at CHOP about doing a phone consult with someone I knew who was dissatisfied with the care her child was getting at a hospital in KC and he said he would do it if the Mom called. Maybe that would be a starting point....and then you can go from there. With Dr. at St. 's being as compassionate man as I suspect he is, I would bet he would do the same. Lynda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1998 Report Share Posted August 6, 1998 One other thing that comes to mind: I know a military family here who have a son with spina bifida. They have been able to stay here in this area because of an ongoing compassionate duty assignment (the Dad is in the Navy). Anyway, when I talked with the Mom she told me that even though they have CHAMPUS coverage for all of the specialty care her son needs, her son is eligible for Medicaid because of his catastrophic bills. The family itself doesn't have Medicaid; there is some program that allows her son to be enrolled because of all of the bills. I don't know if this is of any pertinence to you with but I thought I would mention it. Also, this could be a Penna. State thing since Medicaid programs are administered by state governments. Lynda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1998 Report Share Posted August 6, 1998 In a message dated 98-08-06 22:38:33 EDT, you write: << does have Medicaid plus our Army insurance so we never have to worry about medical bills or anything like that, just our travel expenses. >> I'm glad to hear that. Lynda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1998 Report Share Posted August 6, 1998 In a message dated 98-08-05 21:50:11 EDT, you write: << He keeps telling us that it has to get really bad before it gets better but I just can't see how he can keep a 2-1/2 year old in daily pain. >> Dawn: I am sorry to hear about - I cant believe that a doctor would say that - You should not have to watch your child suffer. CAN YOU GET A SECOND OPINION or at least have someone review the records. I know flew across the country to get Spenser help. I am sure there are docs out there who will review your sons records - I can give you Dr. kellys number and address in Philadelphia if you want. he is wonderful. I am sorry to hear about and will kepp him in my thoughts and prayers. love, sharon mommy to Jake (5)-nda, and fraternal 34.5 week twins Cole (3/30/97) - nda (reformed refluxer) and Clayton(3/30/97) (eosinophil gastroenteritis, mild developmental delays, food allergies (milk, soy, egg, wheat) Nissen and g-tube scheduled 8/14/97) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1998 Report Share Posted August 6, 1998 does have Medicaid plus our Army insurance so we never have to worry about medical bills or anything like that, just our travel expenses. ---------- > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Update on > Date: Thursday, August 06, 1998 10:57 PM > > > > < family itself doesn't have Medicaid; there is some program that allows her > son to be enrolled because of all of the bills. > > I don't know if this is of any pertinence to you with but I thought I > would mention it. Also, this could be a Penna. State thing since Medicaid > programs are administered by state governments. >> > > My daughter has Spina Bifida and the SB chapter we belong to is based in > Philly. I know for a fact that Pennsylvania has a great SB program to help > families. And only the child is enrolled in Medicaid not the family. But I > would check into it because there could be other programs available. > > Phyllis-mom to > Arissa (12/22/95) EG, multiple food allergies, occasional asthma > Remi 6, Spina Bifida, developmental delays, allergies-nuts, shellfish and > latex > > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1998 Report Share Posted August 6, 1998 > I can't believe they will not give you a compassionate duty assignment. Do > you have enrolled in the military's exceptional family member program? > has been enrolled in EFMP since his premature birth. The lady at EFMP gave me a lot of great tips and ideas today and wants us to resubmit for compassionate reassignment with a supporting letter from her. . With Dr. at St. 's > being as compassionate man as I suspect he is, I would bet he would do the > same. > Anyone have his number? Dawn, mom to Dakota and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 1998 Report Share Posted August 7, 1998 Tyler had an endoscopy done by Dr. Friesen about 3 yrs. ago, & I really liked him, but when we were going to have the g-tube placed, we somehow got Dr. Ross. I would like to switch back to Friesen...what do you think of him? Glenda ---------- > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: Update on > Date: Thursday, August 06, 1998 1:36 PM > > > > Dr Friesen, it was you, not Lynda(sorry Lynda) that I wanted to ask who you > saw? > Dawn > > > ---------- > > > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > > Subject: [eosinophilic gastroenteritis] Re: Update on > > Date: Thursday, August 06, 1998 12:51 PM > > > > > > > > Hi Dawn, > > > > What GI doc do you see in Kansas City? > > > > Glenda > > > > ---------- > > > > > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > > > Subject: [eosinophilic gastroenteritis] Re: Update on > > > Date: Thursday, August 06, 1998 6:47 AM > > > > > > > > > > > > We had Tricare but hated it so we have Champus now and see civilians > all > > > except for 's pediatrician who is wonderful. We would LOVE to see > > > someone else but there is really no one around. I guess our only > option > > is > > > to travel far. The closest is St. Louis or Denver, both about 6 hours > > away > > > and my only reserve about that is that even if we see them, we can't > > follow > > > up with them every 2 weeks like we have to with our GI. We applied for > a > > > compassionate reassignment because even right now, we travel 2-1/2 > hours > > to > > > Kansas City to see the GI and Pulmonologist but it was denied. So much > > for > > > the Army taking care of its families. It has made me a bitter person > > > toward the Army. > > > Dawn > > > > > > > > > > > > ---------- > > > > From: RRA4U@... > > > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > > > > Subject: [eosinophilic gastroenteritis] Re: Update on > > > > Date: Wednesday, August 05, 1998 10:14 PM > > > > > > > > > > > > > > > > Are you taking to a military hospital or do you use > > CHAMPUS/TRICARE > > > and > > > > seek civilian care? Any chance of getting out of town to see a > > different > > > > specialist? > > > > > > > > Sorry to hear little is having such a tough time of it. > > > > > > > > Lynda > > > > > > > > > > ------------------------------------------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 1998 Report Share Posted August 8, 1998 I think he is a really nice doctor and very sensitive to our feelings and 's. I like him a lot and so does . We are just seeing this doc in Nebraska for a second opinion. I fully intend on returning to Dr. Friesen for follow up care. Dawn ---------- > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: Update on > Date: Friday, August 07, 1998 11:42 AM > > > > Tyler had an endoscopy done by Dr. Friesen about 3 yrs. ago, & I really > liked him, but when we were going to have the g-tube placed, we somehow got > Dr. Ross. I would like to switch back to Friesen...what do you think of > him? > Glenda > > ---------- > > > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > > Subject: [eosinophilic gastroenteritis] Re: Update on > > Date: Thursday, August 06, 1998 1:36 PM > > > > > > > > Dr Friesen, it was you, not Lynda(sorry Lynda) that I wanted to ask who > you > > saw? > > Dawn > > > > > > ---------- > > > > > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > > > Subject: [eosinophilic gastroenteritis] Re: Update on > > > Date: Thursday, August 06, 1998 12:51 PM > > > > > > > > > > > > Hi Dawn, > > > > > > What GI doc do you see in Kansas City? > > > > > > Glenda > > > > > > ---------- > > > > > > > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > > > > Subject: [eosinophilic gastroenteritis] Re: Update on > > > > Date: Thursday, August 06, 1998 6:47 AM > > > > > > > > > > > > > > > > We had Tricare but hated it so we have Champus now and see civilians > > all > > > > except for 's pediatrician who is wonderful. We would LOVE to > see > > > > someone else but there is really no one around. I guess our only > > option > > > is > > > > to travel far. The closest is St. Louis or Denver, both about 6 > hours > > > away > > > > and my only reserve about that is that even if we see them, we can't > > > follow > > > > up with them every 2 weeks like we have to with our GI. We applied > for > > a > > > > compassionate reassignment because even right now, we travel 2-1/2 > > hours > > > to > > > > Kansas City to see the GI and Pulmonologist but it was denied. So > much > > > for > > > > the Army taking care of its families. It has made me a bitter person > > > > toward the Army. > > > > Dawn > > > > > > > > > > > > > > > > ---------- > > > > > From: RRA4U@... > > > > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > > > > > Subject: [eosinophilic gastroenteritis] Re: Update on > > > > > Date: Wednesday, August 05, 1998 10:14 PM > > > > > > > > > > > > > > > > > > > > Are you taking to a military hospital or do you use > > > CHAMPUS/TRICARE > > > > and > > > > > seek civilian care? Any chance of getting out of town to see a > > > different > > > > > specialist? > > > > > > > > > > Sorry to hear little is having such a tough time of it. > > > > > > > > > > Lynda > > > > > > > > > > > > > > ------------------------------------------------------------------------ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 1998 Report Share Posted December 13, 1998 Hi Dawn, >Also, he said that since right now, his eosinophils are gone from his >biopsies, it should be okay to give him anything he wants to eat, >including dairy. Well we have tried a few times to give him milk and >all HELL breaks loose. He goes diarrhea that is everywhere!! Any ideas >on this?? His allergy tests says he is not allergic to the milk so go >figure!! Seems to me he is allergic! What kind of allergy tests did you have done? If you haven't had blood tests done, I would highly suggest the following blood tests: Test for reactions of the IgE AND IgG antibodies. IgG is a delayed food sensitivity, which could be causing the problem. Also might be worth testing for Lactose Intolerance. If you've had all those tests done, it could be that he tested false-negative, and he really is allergic to milk. I have identified a number of foods that I react to, yet continue to test negative in the 2 IgE and 2 IgG blood tests I've had done in the last year. I would be cautious about the " go ahead " that your doctor has given you about foods. Most GI doctors (actually almost all doctors) are ill-informed about the role of food. I am 100% convinced that my EG is food-allergy triggered, and ONLY food-allergy triggered. Yet my GI doctor says there is no clinical evidence in the field that food is an EG trigger. So far I have identified 2 foods that will start up my EG and reflux: soy and corn. I am in no rush to identify more foods that trigger my EG Even extremely small quantities (like a tiny-weenie test bite of chicken that happened to be marinated in soy..) will send my stomach into gyrations, and off I go to the doctor for a dose of prednisone to settle it back down. >Also wanted to mention, it seems that his eosinophils are gone from his >biopsy but his blood eosinophil count is still more than twice the >normal limit????? Been there, done that. My eosinophils were clear of my duodenum (I have EG), yet eosinophils continue to show up in my blood tests. It is a sign th ere is still an allergic reaction/condition going on. It may be that there are foods or airborne allergens that are kicking up the blood eosinophils, yet the allergen that was causing the EG has been eliminated. I've been on a food-allergen-free diet for a number of months now, and I think it's time to get my blood eosinophil count taken again. I bet it's way down, as I think I've found most of my food allergens (looooong list). Hope this helps. Happy holidays, Kenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 1998 Report Share Posted December 13, 1998 What kind of allergy tests did you have done? We did blood allergy tests but he has never had the skin allergy tests. > I am 100% convinced that my EG is food-allergy > triggered, and ONLY food-allergy triggered. Yet my GI doctor says there is > no clinical evidence in the field that food is an EG trigger. I think that the reason his eosinophils were gone were because we were completely avoiding dairy. Of course, I can't find a GI doc who will agree with me on this. But time will see, now that he is eating dairy, we will see if his eosinophils come back. Even extremely small quantities (like a tiny-weenie test bite of chicken that happened to be marinated in soy..) will send my stomach into gyrations, and off I go to the doctor for a dose of prednisone to settle it back down. did really well on Prednisone, he never had pain and his diarrhea slowed down a lot. He was on Prednisone for 1-1/2 years and the GI doc said he can't stay on it this long but I can't stand to see him hurt. > Been there, done that. My eosinophils were clear of my duodenum (I have > EG), yet eosinophils continue to show up in my blood tests. It is a sign th > ere is still an allergic reaction/condition going on. It may be that there > are foods or airborne allergens that are kicking up the blood eosinophils, > yet the allergen that was causing the EG has been eliminated. has EG too. His eosinophil count went to the count it is now when he was 1, when we started solids and hasn't come down any in the 2 years since then. If you don't mind me asking, what does your EOS count run? I just wonder what it is in an adult. Dawn, mommy to Dakota, 6 and , 3(eosinophil gastroenteritis, and reflux) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 1998 Report Share Posted December 14, 1998 In a message dated 12/13/98 11:28:09 PM Eastern Standard Time, j7160@... writes: << We did blood allergy tests but he has never had the skin allergy tests. >> Blood allergy tests (RAST tests) have false negatives and false positives. RAST testing is only a tool in the whole diagnosis of food allergy and is not conclusive for a diagnosis of food allergy (or a basis for declaring one non allergic to a food) in most instances. CAP-RAST testing is more helpful but not all docs perform CAP-RAST testing. Lynda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 1998 Report Share Posted December 14, 1998 In a message dated 12/14/98 5:51:11 PM Eastern Standard Time, SJHarlow@... writes: << THe only thing that matters are the symptoms >> I agree. Clayton skin tests negative - granted he is young - but he clearly has reactions to certain foods. Trust me you do not want to be around him when he eats one of those foods. Love, Sharon mommy to Jake (5) and fraternal twins (34.5 weeks) (3/30/97) - Cole -(nda) and Clayton (eosinophilic gastroenteritis, food allergies (milk, soy, eggs, wheat), g-tube, Nissen and possible latex allergy, some DD, undiagnosed neuro issues and sensory integration disorder and now tremors. WHEN WILL THIS END) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 1998 Report Share Posted December 14, 1998 Dawn, AT one point Kody was actually taking two 20mg tabs of Prilosec a day. SJHarlow@... http://www.c4isr.com/harlow Quote Link to comment Share on other sites More sharing options...
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