Guest guest Posted June 1, 1998 Report Share Posted June 1, 1998 In a message dated 98-05-31 11:53:38 EDT, you write: << I am a new member and very interested in symptoms/testing that one should do for a diagnosis.. >> The main test to daignosis EG is an endoscopy and biopsy. They will look for a high eosinophil count in th small bowel and esphagus. Symptoms wary from child to child. Clayton has severe reflux and stomach pain and would not eat any formula until the neocate. He was down to 10-12 ounces a day at 6 months before he was switvhed. He also gets severe excema when he eats something he shouldn't and also severe stomach pains. Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1998 Report Share Posted June 1, 1998 In a message dated 98-06-01 12:06:14 EDT, you write: << 7 sweat tests(thank goodness, all negative) >> Dawn: I assume that they thought had CF. This seems to be the norm. Clayton had 3 sweat tests, first borderline, the second 2 negative, but this was not enopugh to convince the doc that he did not have CF thus we had genetic screening done. This was negative and means about 97% he does not have CF - except they do not want to totally rule out CF. Clayton has also had: Upper GI, EEG, MRI, ultrasounds, etc. With the exception of the excema Clayton rarely, if ever shows outward signs of allergies. Love, sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1998 Report Share Posted June 1, 1998 In a message dated 6/1/98, 12:00:31 PM, eosinophilic gastroenteritis (AT) onelist (DOT) com writes: <<<< I am a new member and very interested in symptoms/testing that one should do for a diagnosis.. >>> was also diagnosed by endoscopy. His symptoms started at birtth. He refused to eat and vommitted constantly. He also had severe excema on his head, face and chest. He did not gain any weight for the first three months of his life (the docs did not worry about this because he was 12 lbs 2 oz. at birth). He screamed day and night. He was switched to Neocate at 3 months and did better. At six months he was taken off Neocate. By one year he was starting to get sick again. This time with constant vommitting (up to dozen times a day). He also had classic food allergy reactions such as hives and facial swelling. He was diagnosed at 19 months. He also underwent the sweat test and an upper GI when he was 3 months. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1998 Report Share Posted June 1, 1998 had the same tests but his symptoms are somewhat different in that he doesn't show anything on the outside from his allergies. His small intestines swell and he gets severe tummy pains and severe diarrhea when he has a reaction. He had lots of other tests before his diagnosis, though. Such as x-rays for bone age, 7 sweat tests(thank goodness, all negative), countless blood tests and lots and lots of stool samples. Stool samples are great when they want to figure out how much they are absorbing/putting out. Dawn ---------- > From: SDidinsky@... > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: Testing > Date: Monday, June 01, 1998 10:58 AM > > > > In a message dated 98-05-31 11:53:38 EDT, you write: > > << I am a new member and very interested in symptoms/testing that one should > do > for a diagnosis.. > >> > > The main test to daignosis EG is an endoscopy and biopsy. They will look for a > high eosinophil count in th small bowel and esphagus. > > Symptoms wary from child to child. Clayton has severe reflux and stomach pain > and would not eat any formula until the neocate. He was down to 10-12 ounces a > day at 6 months before he was switvhed. He also gets severe excema when he > eats something he shouldn't and also severe stomach pains. > > Love, > Sharon > > ---------------------------------------------------------------------------- - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1998 Report Share Posted June 1, 1998 Hi Sharon, It seems a negative for CF never satisfies them. A few of ours were borderline others were not even close. A doc once even told me he had CF even though the sweat test said otherwise, he said they are not completely accurate. That is when I demanded the genetic test and it was finally proven does not have CF. My best friend's son who's 3 has CF, I thank the God above is negative. We just tell them no to the sweat test now. It seems every new doc we see wants to do one. Dawn ---------- > From: SDidinsky@... > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: Testing > Date: Monday, June 01, 1998 11:47 AM > > > > In a message dated 98-06-01 12:06:14 EDT, you write: > > << 7 sweat tests(thank goodness, all negative) >> > > Dawn: > > I assume that they thought had CF. This seems to be the norm. Clayton > had 3 sweat tests, first borderline, the second 2 negative, but this was not > enopugh to convince the doc that he did not have CF thus we had genetic > screening done. This was negative and means about 97% he does not have CF - > except they do not want to totally rule out CF. Clayton has also had: Upper > GI, EEG, MRI, ultrasounds, etc. > > With the exception of the excema Clayton rarely, if ever shows outward signs > of allergies. > > Love, > sharon > > ---------------------------------------------------------------------------- - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 1998 Report Share Posted June 3, 1998 In a message dated 6/1/98 12:05:46 PM Central Daylight Time, SDidinsky@... writes: << I assume that they thought had CF. This seems to be the norm. Clayton had 3 sweat tests, first borderline, the second 2 negative, but this was not enopugh to convince the doc that he did not have CF thus we had genetic screening done. >> Hi everyone this is exactly the problem we are having with chris's dr's he keeps wanting to redo the sweat tests I think it is getting rediculous!! chris has had 5 sweat tests now 2 came out boarder line and 3 came out negative. but the dr is still convinced that this is waht he has because chris has had pneumonia 5 times now and because he is so far behind on his weight, never mind that he was already certain that he had mitochondrail disorder and ran millions of tests for this which turned out to be negative other than he is acidotic which he has been that way since birth. I am realy begining to think this guy is just running tests cause he ' think " it is gonna make me feel better that we are trying to find a DX.... and actually it might if we werent running the same tests over and over again!! I mean come on how many tests is this little boy supposed to go through? any ways I know how you all feel!! take care angela and the munchkins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 1998 Report Share Posted June 3, 1998 In a message dated 98-06-03 17:16:48 EDT, you write: << chris has had 5 sweat tests now 2 came out boarder line and 3 came out negative. but the dr is still convinced that this is waht he has because chris has had pneumonia 5 times now and because he is so far behind on his weight, never mind that he was already certain that he had mitochondrail disorder and ran millions of tests for this which turned out to be negative other than he is acidotic which he has been that way since birth. >> Clayton also has been suspected of having a mitocondial disorder, although this has not been ruled out yet in his case. , have they done the genetic screening for CF. It is a simple blood test. If not have it done but make sure you have it run by the Genzyme lab. They test for the most mutations. Clayton had this done. It was worth it as although it only rules CF out 98-99% it is more definitive that a sweat test, as some kids, especially kids who are malnurished, can have negative sweat tests. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 1998 Report Share Posted June 4, 1998 I haven't formally introduced ourselves but I have been lurking. Bryce was tested for CF to " rule it out " and it was negative. I am wondering how many people on this list have Eosinophilic ESOPHAGITIS? Amy (mom to 6yr old girl, three year old son, eosinophilic esophagitis,nissen, gtube, food allergies) drawe@... ---------- > Hi, > We have spoke before. Spencer has been sweat tested twice and then also > genetic tested. All negative. > > > ---------- > > From: SJHarlow@... > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > > Subject: [eosinophilic gastroenteritis] Re: Testing > > Date: Thursday, June 04, 1998 11:33 AM > > > > From: SJHarlow@... > > > > Does anyone else find it interesting that so many on this list have had > > their kids tested for CF? > > > > I wonder if there is a correlation here. THe symptoms must mimic. I > > would like a head count of how many kids here with eos gastro or eos > > esophag have been sweat tested? my oldest was tested twice. > > > > SJHarlow@... > > http://www.c4isr.com/harlow > > > > > ---------------------------------------------------------------------------- > - > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 1998 Report Share Posted June 4, 1998 Clayton had 3 sweat tests and the gentic blood tests and the pulmonologist will still not rule CF out 100%. Go figure. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 1998 Report Share Posted June 4, 1998 Does anyone else find it interesting that so many on this list have had their kids tested for CF? I wonder if there is a correlation here. THe symptoms must mimic. I would like a head count of how many kids here with eos gastro or eos esophag have been sweat tested? my oldest was tested twice. SJHarlow@... http://www.c4isr.com/harlow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 1998 Report Share Posted June 4, 1998 Hi, We have spoke before. Spencer has been sweat tested twice and then also genetic tested. All negative. ---------- > From: SJHarlow@... > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: Testing > Date: Thursday, June 04, 1998 11:33 AM > > From: SJHarlow@... > > Does anyone else find it interesting that so many on this list have had > their kids tested for CF? > > I wonder if there is a correlation here. THe symptoms must mimic. I > would like a head count of how many kids here with eos gastro or eos > esophag have been sweat tested? my oldest was tested twice. > > SJHarlow@... > http://www.c4isr.com/harlow > > ---------------------------------------------------------------------------- - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 1998 Report Share Posted June 4, 1998 In a message dated 6/4/98 10:59:47 AM Pacific Daylight Time, andrea.allred@cu- lending.com writes: << Hi, We have spoke before. Spencer has been sweat tested twice and then also genetic tested. All negative. >> , What is a sweat test? Thanks, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 1998 Report Share Posted June 4, 1998 My son had a sweat test when he was a baby, but it was due to recurrent pneumonias and asthma moreso than esophagitis. Lynda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 1998 Report Share Posted June 4, 1998 In a message dated 98-06-04 13:33:36 EDT, you write: << I would like a head count of how many kids here with eos gastro or eos esophag have been sweat tested? >> had one sweat test (negative) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 1998 Report Share Posted June 4, 1998 In a message dated 98-06-04 13:33:36 EDT, you write: << I wonder if there is a correlation here. THe symptoms must mimic. I would like a head count of how many kids here with eos gastro or eos esophag have been sweat tested? my oldest was tested twice. >> I have not been keeping a tally. i will check my e-mails and try to see how many. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 1998 Report Share Posted June 4, 1998 Here is the tally of sweat tests: So far almost everyone who has indicated so has had at least one sweat test: Sharon (Clayton) - 3 sweat tests & gentic testing (Spenser) - 2 sweat tests & gentic testing Amy (Bryce) - 1 sweat test () -1 sweat test Lynda ( ) - 1 sweat test SJ (oldest son) - 1 sweat test So far 6 kids on the list have had this test done. You seem to be onto something that the symptoms mimic CF in at least some ways. Probably, failure to thrive, cough , lung infections. What were the symproms that caused everyones doc to to the sweat test? Also, if you wnat to be added to this list let me know. I will update this. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 1998 Report Share Posted June 4, 1998 A sweat test is where they measure the salt that your child produces. They wrap the childs arm in a certain material that collects the sweat and then they measure how much salt was in the material. There is a normal range and an abnormal range. Cystic Fybrosis children have an excess of salt in their system. One easy way to check if you need to have this done is to lick your child on the arm or check and see if it is really salty. Do this several time over a weeks time. If it seems to be abnormally salty (ie: lick your own arm to compare) then you should speak to your doctor about having your child tested for CF. This is the Sweat test. ---------- > From: DarwinW391@... > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: Testing > Date: Thursday, June 04, 1998 5:03 PM > > > > In a message dated 6/4/98 10:59:47 AM Pacific Daylight Time, andrea.allred@cu- > lending.com writes: > > << Hi, > We have spoke before. Spencer has been sweat tested twice and then also > genetic tested. All negative. > > >> > , > What is a sweat test? > Thanks, > Vicki > > ---------------------------------------------------------------------------- - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 1998 Report Share Posted June 4, 1998 > << I > would like a head count of how many kids here with eos gastro or eos > esophag have been sweat tested? >> has been tested 7 times, wow, I think I am the winner. What did I win? LOL! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 1998 Report Share Posted June 4, 1998 had 7 sweat tests & genetic testing ---------- > From: SDidinsky@... > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: Testing > Date: Thursday, June 04, 1998 9:57 PM > > > > Here is the tally of sweat tests: > > So far almost everyone who has indicated so has had at least one sweat test: > > Sharon (Clayton) - 3 sweat tests & gentic testing > (Spenser) - 2 sweat tests & gentic testing > Amy (Bryce) - 1 sweat test > () -1 sweat test > Lynda ( ) - 1 sweat test > SJ (oldest son) - 1 sweat test > > So far 6 kids on the list have had this test done. You seem to be onto > something that the symptoms mimic CF in at least some ways. Probably, failure > to thrive, cough , lung infections. What were the symproms that caused > everyones doc to to the sweat test? > > > Also, if you wnat to be added to this list let me know. I will update this. > > Sharon > > ---------------------------------------------------------------------------- - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1998 Report Share Posted June 5, 1998 In a message dated 6/5/98, 1:28:23 AM, eosinophilic gastroenteritis (AT) onelist (DOT) com writes: < > was sweat tested for several reasons. He did not gain any weight the first 3 months of life. Also he had coughing, vommitting(w/mucus), constant screaming, trouble feeding, hospitalization for pneumonia and was just generally sick. I have a family history of CF which also played into the decision to do the test. Regarding the doctors not listening: I had a doctor tell me that there was nothing wrong with my child. She said that I was just a nervous first time mother and that had colic. She actually said this as I sat there with a screaming child who was covered with scabs on his head face and chest. The following week he ended up in the hospital for 4 days with pneumonia, dehydration and RSV. Believe it or not, the docs still told me that he was fine. He had been taken off all formula and was only on IV fluids. His symptoms decreased dramatically. I pointed this out to the doc and still she did not listen. When the nurses tried to feed him formula they noticed the problems and finally helped me convince the doc that we needed to see a GI doc. The doc never apologized and I didn't give her much of a chance. I found a new pediatrician. It still took awhile to get a diagnosis but these docs were much more willing to listen to me. Sorry to go on so long but I get so angry everytime I think of that doctor. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1998 Report Share Posted June 5, 1998 In a message dated 98-06-05 07:52:09 EDT, you write: << Regarding the doctors not listening: I had a doctor tell me that there was nothing wrong with my child. She said that I was just a nervous first time mother and that had colic. She actually said this as I sat there with a screaming child who was covered with scabs on his head face and chest. The following week he ended up in the hospital for 4 days with pneumonia, dehydration and RSV. Believe it or not, the docs still told me that he was fine. He had been taken off all formula and was only on IV fluids. His symptoms decreased dramatically. I pointed this out to the doc and still she did not listen. When the nurses tried to feed him formula they noticed the problems and finally helped me convince the doc that we needed to see a GI doc. The doc never apologized and I didn't give her much of a chance. I found a new pediatrician. It still took awhile to get a diagnosis but these docs were much more willing to listen to me. >> Jen, I could have written the SAME story!!!!! The same, exact story!!!! When I got a copy of my son's chart from the pediatrician to take with me when we moved from California to Pennsylvania, I looked and saw that the diagnosis when I had been trying to explain Matt's irritability and other symptoms months earlier: " mother-child adjustment difficulties. Recommend Mom go into therapy. " It wasn't until Matt started vomiting blood and had two hospitalizations for asthma/aspiration pneumonia, when I DEMANDED to have a consult with a ped allergist, that the diagnosis of reflux was made and Matt finally got the meds he so desperately needed. Regarding your IV fluid story, the same thing happened with Matt: I was telling the doctor Matt's face swelled from Nutramigen. He didn't believe me until Matt was in the hospital NPO for a few days, and then the first Nutramigen bottle, BINGO! His face swelled right up! Then he believed me! You want to hear what the pediatrician told ME when I told HIM he blew the diagnosis with my son? " Well, Mrs. , sometimes it takes a fresh set of eyes to put all the pieces together on a case. " And , in a separate conversation, he explained to me that he couldn't spend the time putting the pieces together and reading through a child's chart to do so because he had to keep his practice running at a pace that would allow an income to afford the lifestyle his family expects --big house and kids in private school, etc. etc. BTW, Jen, since you and I are practically next door neighbors , I must tell you that I don't take Matt to any pediatricians locally. I take him to Liacouras for GI, Schwarz in Doylestown for asthma and allergies and I take him to the General Pediatric Faculty Practice at CHOP for all of his regular pediatric visits. I gave up on finding a pediatrician in Doylestown. The one I used flat out mis diagnosed Matt a few times. The rest of them pretty much share call and I didn't want to deal with that one doctor again on a call basis. And the big pediatric practice over by the hospital is just too big--I don't like musical doctors, I prefer one-on-one. I don't know about you or the rest of the Moms here, but I find that general pediatricians try to " pidgeon hole " kids like ours into their top five diagnoses for regular kids. IOW, if my son starts vomiting, the pediatricians are quick to say, " it's a virus " . But, If I call down to CHOP, they will say, " well, Mrs. MItchell, with Matt's history of surgery, C. difficile, reflux and other chronic conditions, I think we need to do some stool cultures, a stool antigen test for C. diff again, and don't give him any immodium! " . So, I guess this is my way of saying I use a pediatrician very little. For GI problems, I call the Gi doc. For respiratory tract or skin problems, I call the allergist. That doesn't leave a whole lot to see the pediatrician for anymore! (He did get strep throat last fall which I needed to take him to the general pediatrician at CHOP for. The he developed a rash, so the antibiotics were switched. Then he broke out in hives from the Erythromycin......but at least I had CHOP pediatricians working with me on it this time instead of a local pediatrician who probably would have just told me to give Matt more benadryl and call him back in the morning! ) Lynda Lynda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1998 Report Share Posted June 5, 1998 I know exactly what you mean, 's first doc when he was born, Dr. Thacker, the chief of peds, no less, told me when was 3 months old and weighs 5lbs3oz. that he was fine and just spit up a little more than normal babies and the fact that by 3 months, he had already had pneumonia and bronchitis was just that he was a preemie and they have low immunity for the first year. By 3 months, besides being in the NICU, this ped had hospitalized him 3 other times each time taking away his formula and feeding him through an IV, he would see improvement so what would he do, take the IV out and send him home. UGH! We had to go to the hospital commander who took one look at and got us an appointment with a GI doc that day! Do you think anything was done to Dr. Thacker? Nope! I think we should start a web page with just our opinions, NEVER SEE THIS DOC!, LOL! BTW, we have a family history of CF too. That was why after failed sweat tests the docs went one step further and did genetic testing. Dawn ---------- > From: Jenericm@... > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: Testing > Date: Friday, June 05, 1998 6:51 AM > > > > In a message dated 6/5/98, 1:28:23 AM, eosinophilic gastroenteritis (AT) onelist (DOT) com writes: > < everyones doc to to the sweat test?>> > > was sweat tested for several reasons. He did not gain any weight the > first 3 months of life. Also he had coughing, vommitting(w/mucus), constant > screaming, trouble feeding, hospitalization for pneumonia and was just > generally sick. > > I have a family history of CF which also played into the decision to do the > test. > > Regarding the doctors not listening: I had a doctor tell me that there was > nothing wrong with my child. She said that I was just a nervous first time > mother and that had colic. She actually said this as I sat there with > a screaming child who was covered with scabs on his head face and chest. The > following week he ended up in the hospital for 4 days with pneumonia, > dehydration and RSV. Believe it or not, the docs still told me that he was > fine. He had been taken off all formula and was only on IV fluids. His > symptoms decreased dramatically. I pointed this out to the doc and still she > did not listen. When the nurses tried to feed him formula they noticed the > problems and finally helped me convince the doc that we needed to see a GI > doc. The doc never apologized and I didn't give her much of a chance. I > found a new pediatrician. It still took awhile to get a diagnosis but these > docs were much more willing to listen to me. > > Sorry to go on so long but I get so angry everytime I think of that doctor. > > Jen > > ---------------------------------------------------------------------------- - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1998 Report Share Posted June 5, 1998 In a message dated 98-06-05 08:47:26 EDT, you write: << Regarding your IV fluid story, the same thing happened with Matt: I was telling the doctor Matt's face swelled from Nutramigen. He didn't believe me until Matt was in the hospital NPO for a few days, and then the first Nutramigen bottle, BINGO! His face swelled right up! Then he believed me! >> Clayton also did horrible on nutramagin and screamed 24/7 and was eating less than 12 ounces a day of it, force feeding him that the new doc switched him to Neocate. I also could write the same story as Jen. We left our first GI who said Clayton was fine just mild reflux, this is after a ph probe that was at 1 for almost the whole night and a biopsy that showed eosinophils and a flattened small bowel (blunted villi) at three months of age - both Dr. (who we see now and love) and Dr, Hugh Sampson said that this should have been a red flag to the GI doc of a milk and soy allergy as Clayton had to have some trauma to his small bowel to cause the blunting at such a young age and he was on no foods. HELLO. FInally when we child was starting to fall off the charts we ended up at Kennedy Kreiger in Baltimore although we live right outside of Philadelphia (Cherry Hill, NJ). We saw Dr. Katx there and he eventually referred us up to Dr, at St. s in Philly. Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1998 Report Share Posted June 5, 1998 had one sweat test -negative Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 1998 Report Share Posted June 6, 1998 had 5 sweat tests and the reasons for the test was lung infections and failure to thrive and by the way ROFL DAWN I think you do win course if our dr's keep it up we may beat ya in the long run though I really really hope we dont!!!! take care angela and the munchkins Quote Link to comment Share on other sites More sharing options...
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