Guest guest Posted April 10, 2002 Report Share Posted April 10, 2002 Hi Debbie, Most doctors consider a consult as only giving an opinion. Treatment means if you return to him for regular visits for injections, exams, rx., etc. I'm sorry that you are having a rough time. I hope that you can hang on until you can get some relief. I guess that's what we're all trying to do though. Stacey in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 Hi and hope you are feeling better. If it helps at all, I have found Dr. at Lucille Packard to be extremely kind and knowledgeable. However, after all I went thru (and perhaps you?) re: diagnosis, if your child is positive, perhaps just going GF is enough. Did the blood work include a TTG and IgA tests? If these were positive and your child exhibits anything unusual like belly aches, changes in appetite, cravings, mood swings, etc., then perhaps you can get away with just a consultation with Stanford and go GF without the biopsy. The only thing is the endoscope can reveal other abnormalities like ulcer or gastritis assoc. commonly with CD> Also, the extent of damage would be revealed. Its a tough call, we are in the same boat with one of our kids whose tests were high normal. So we are goingto retest in 6 mos and challenge her for 2 weeks prior to blood work. She is not totally gf but our household is more gf than not. Good luck, >From: " pelmo " <pelmo@...> >Reply- > " Celiacbayareagroups (DOT) Com " < > >Subject: [ ] HI there! >Date: Wed, 20 Nov 2002 22:31:57 -0800 > >HI There > >I just came back from having the surgery, so hopefully I will start >feeling better. > >My kids pediatrician called and she said that one of my kids tests came >back as celiac too. > >How many of you have celiac kids? > >They want me to take her to Stanford, but I don't want to put her thru >all the agony I've been thru. > >Any suggestions? > >My pediatrician is Doctor Volpe and it seems that there is a specialist >who comes once a month and knows al lot. > >Love] > > > >www.gepeling.org > >Here to benefit others! > >VIRUS FREE! > >Outgoing mail scanned by Norton Antivirus! > > > _________________________________________________________________ Help STOP SPAM with the new MSN 8 and get 2 months FREE* http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 Hello , There is a test, called the rectal gluten challenge, that is used on children. For reference for your pediatrician, there is a study published on this test in Gastroenterology 1996 Aug. The study showed that the rectal gluten challenge identified 100% of patients with CD. Another test that may be helpful is from Great Plains Laboratory, is the urinarypeptide for gliadorphin/caseomorphin test. By the way, what kind of surgery did you had? Be well, France Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 Hi , It is difficult to answer, because it seems to be a lot of surgical interventions on a celiac patient. Have you tried to obtain some second advice from a different physician or health practitionner more holistically oriented, and above all well educated in nutrition? Surgery, unfortunately the quick fix answer of too many allopathic physicians, is very traumatic and should always considered as the last solution, after everything else has been tried. May be it was necessary in your case, I do not have all the data and cannot prononce myself without knowing more. But what I can affirm, because I have been involved in post abdominal surgery care for a long time, is that after the kind of surgery you described, it is not surprising that you are in pain. Hope you can get plenty of rest, support and high quality GF nutrition. Good luck, and take care, France Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 HI France This year I have been 3 times in the hospital and one of them almost dying They did gallbladder, then they found out I had ulcer and they gave me antibiotics and I lost a lot of weight (90 lbs) so they put me back in, they did endoscopy and found out I was celiac in July, and now they did and ERCP and they cut the sphincter, they cut a muscle that goes to the liver and they also removes stones (gravel) from the liver. I woke up in the middle so they couldn’t do the biopsies. Next Monday on the 2ns they will do another colonoscopy because I am still in pain. My house is 100% gluten free. I don’t go out because I get sick from smells, so I don’t what else is creating the pain. Today I will know the results about my kids. Love www.gepeling.org Here to benefit others! VIRUS FREE! Outgoing mail scanned by Norton Antivirus! -----Original Message----- From: FranceLV@... [mailto:FranceLV@...] Sent: Friday, November 22, 2002 3:14 PM Subject: Re: [ ] HI there! Hello , There is a test, called the rectal gluten challenge, that is used on children. For reference for your pediatrician, there is a study published on this test in Gastroenterology 1996 Aug. The study showed that the rectal gluten challenge identified 100% of patients with CD. Another test that may be helpful is from Great Plains Laboratory, is the urinarypeptide for gliadorphin/caseomorphin test. By the way, what kind of surgery did you had? Be well, France To unsubscribe from this group, send an email to: -unsubscribe Your use of is subject to the Terms of Service. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 Thanks My husband just went to see the pediatrician and one of the kids is not celiac, we are still waiting for the other one. Love www.gepeling.org Here to benefit others! VIRUS FREE! Outgoing mail scanned by Norton Antivirus! -----Original Message----- From: FranceLV@... [mailto:FranceLV@...] Sent: Friday, November 22, 2002 4:42 PM Subject: Re: [ ] HI there! Hi , It is difficult to answer, because it seems to be a lot of surgical interventions on a celiac patient. Have you tried to obtain some second advice from a different physician or health practitionner more holistically oriented, and above all well educated in nutrition? Surgery, unfortunately the quick fix answer of too many allopathic physicians, is very traumatic and should always considered as the last solution, after everything else has been tried. May be it was necessary in your case, I do not have all the data and cannot prononce myself without knowing more. But what I can affirm, because I have been involved in post abdominal surgery care for a long time, is that after the kind of surgery you described, it is not surprising that you are in pain. Hope you can get plenty of rest, support and high quality GF nutrition. Good luck, and take care, France To unsubscribe from this group, send an email to: -unsubscribe Your use of is subject to the Terms of Service. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2007 Report Share Posted March 9, 2007 Hi Machaela Welcome to the group! My name is Lucy and my husband Garry and I have a two year old daughter called Holly (photos under Holly Ellen) who is the first in the family with BPES. Holly was finally diagnosed aged approx 5 months and had her first eye lift September 2006. Everything went very well and she is like a different little girl, her head posture being so different after the operation. If you want to find out any more information please e-mail me. Thanks Lucy (Hampshire, UK)macster74 <macster74@...> wrote: My name is Machaela. I am a new member.I have a two year old daughter, Jessie who was diagnosed with BPES when she was approx 8mths old. We are in Australia and Jessie is having her first surgery in December this year. We have never met or seen another child with BPES until we found this group. We are overjoyed to have found it!! Now you can scan emails quickly with a reading pane. Get the new . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2007 Report Share Posted March 9, 2007 Hi, I'm and have a 3 1/2 year old daughter with bpes. we live in melbourne. were are you? we are in sydney quite a bit too. hope all is well. this site is fantastic blepharophimosis Hi there! My name is Machaela. I am a new member.I have a two year old daughter, Jessie who was diagnosed with BPES when she was approx 8mths old. We are in Australia and Jessie is having her first surgery in December this year. We have never met or seen another child with BPES until we found this group. We are overjoyed to have found it!! Send instant messages to your online friends http://au.messenger. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 Hi I'm new too. My son Donovan was just diagnosed a week ago. Finding this group was very helpful. I had never heard of BPES so now I find myself looking at everyone's eyes trying to find someone else that has it. It's reasurring to see other happy, healthy children that look so much like him. Best wishes for surgery, we'll be going through it this year as well. -- In blepharophimosis , " macster74 " <macster74@...> wrote: > > My name is Machaela. I am a new member.I have a two year old daughter, > Jessie who was diagnosed with BPES when she was approx 8mths old. We > are in Australia and Jessie is having her first surgery in December > this year. We have never met or seen another child with BPES until we > found this group. We are overjoyed to have found it!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 Hi there.We are in Ballarat,. Jessie is under a specialist in Melbourne.My partner Kenny and I have an 8yr old son, Jordan who does not have BPES, so Jessie is the first in our family. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2007 Report Share Posted March 11, 2007 --- In blepharophimosis , " macster74 " <macster74@...> wrote: > > Hi there.We are in Ballarat,. Jessie is under a specialist in > Melbourne.My partner Kenny and I have an 8yr old son, Jordan who does > not have BPES, so Jessie is the first in our family. > Hi,My name is Ally and Im the 1st in my family to have BPES.2 of my 4 children have BPES they are both boys one is 17 and the other one 9. Ive been living on the Gold Coast for 2 years now,Most of my family live in Ballarat,Vic.My specialist is Cleeland she has offices at the Royal Childrens Hospital in Melbourne.Im visiting family in Ballarat around April/May,and if you would like to catch up for a coffee and chat that would be great.I look forward to hearing from you All the best to your family,Ally. Quote Link to comment Share on other sites More sharing options...
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