2 year old In the hospital again with pancreatitis

N

NAVCHAPDOC

New member
This makes my 2 year old daughters 2nd stay in the hospital with pancreatitis. This is the 3 episode that we know of in the last 3 months. Dr's are scratching their heads and running every test I could name off. Her Lipase was 16,400 (yes, thats right 16,400)and Amylase was 2300. Three sweat tests later and they still cant get her to sweat enough to trigger the test. CF carrier screening was neg (yes, I know this test is pretty much useless) Thing is, even with labs that high, she is out running us and the staff. You would never know anything was wrong with her except she vomited last night which is why we took her to the hospital. I really wish someone out there could relate to what we are going through and offer some advice.
John
 
N

NAVCHAPDOC

New member
This makes my 2 year old daughters 2nd stay in the hospital with pancreatitis. This is the 3 episode that we know of in the last 3 months. Dr's are scratching their heads and running every test I could name off. Her Lipase was 16,400 (yes, thats right 16,400)and Amylase was 2300. Three sweat tests later and they still cant get her to sweat enough to trigger the test. CF carrier screening was neg (yes, I know this test is pretty much useless) Thing is, even with labs that high, she is out running us and the staff. You would never know anything was wrong with her except she vomited last night which is why we took her to the hospital. I really wish someone out there could relate to what we are going through and offer some advice.
John
 
N

NAVCHAPDOC

New member
This makes my 2 year old daughters 2nd stay in the hospital with pancreatitis. This is the 3 episode that we know of in the last 3 months. Dr's are scratching their heads and running every test I could name off. Her Lipase was 16,400 (yes, thats right 16,400)and Amylase was 2300. Three sweat tests later and they still cant get her to sweat enough to trigger the test. CF carrier screening was neg (yes, I know this test is pretty much useless) Thing is, even with labs that high, she is out running us and the staff. You would never know anything was wrong with her except she vomited last night which is why we took her to the hospital. I really wish someone out there could relate to what we are going through and offer some advice.
<br />John
 
K

ktsmom

New member
I am very sorry to hear this. I wish you could get the answers you need.

Did you determine for sure which Quest test was done (i.e. how many mutations did they test for)? Other than that I don't have any advice but I certainly feel your frustation and am hoping for the best for you and your daughter.

I sent you a PM.
 
K

ktsmom

New member
I am very sorry to hear this. I wish you could get the answers you need.

Did you determine for sure which Quest test was done (i.e. how many mutations did they test for)? Other than that I don't have any advice but I certainly feel your frustation and am hoping for the best for you and your daughter.

I sent you a PM.
 
K

ktsmom

New member
I am very sorry to hear this. I wish you could get the answers you need.
<br />
<br />Did you determine for sure which Quest test was done (i.e. how many mutations did they test for)? Other than that I don't have any advice but I certainly feel your frustation and am hoping for the best for you and your daughter.
<br />
<br />I sent you a PM.
 
J

jmom

New member
navchapdoc-
Just in case this is helpful to keep in the back of your mind...when we were discussing the possibility of my daughter having CF with her GI specialist, he told me a story of how he recently had two brothers with NO history of health problems whatsoever. I got the impression they were in their early teens. Looked healthy. They both wound up in the hospital for pancreatitis around the same time. This GI doc had them sweat tested for CF, and sure enough, both had it. The pulmonary doc at the hospital didn't believe our GI doc. Said it was impossible, since they had no history of pulmonary involvement or failure to thrive/nutritional issues. He insisted they repeat the sweat test before he would believe they had CF. Again, the sweat tests proved CF, as well as later genetic testing. This doubting doctor was at an accredited CF children's hospital, too! Goes to show, even the supposed "experts" don't always have the same gut feeling. And my GI doc experience firsthand "idiopathic pancreatitis" with NO OTHER SYMPTOMS....in BROTHERS, none-the-less!
 
J

jmom

New member
navchapdoc-
Just in case this is helpful to keep in the back of your mind...when we were discussing the possibility of my daughter having CF with her GI specialist, he told me a story of how he recently had two brothers with NO history of health problems whatsoever. I got the impression they were in their early teens. Looked healthy. They both wound up in the hospital for pancreatitis around the same time. This GI doc had them sweat tested for CF, and sure enough, both had it. The pulmonary doc at the hospital didn't believe our GI doc. Said it was impossible, since they had no history of pulmonary involvement or failure to thrive/nutritional issues. He insisted they repeat the sweat test before he would believe they had CF. Again, the sweat tests proved CF, as well as later genetic testing. This doubting doctor was at an accredited CF children's hospital, too! Goes to show, even the supposed "experts" don't always have the same gut feeling. And my GI doc experience firsthand "idiopathic pancreatitis" with NO OTHER SYMPTOMS....in BROTHERS, none-the-less!
 
J

jmom

New member
navchapdoc-
<br />Just in case this is helpful to keep in the back of your mind...when we were discussing the possibility of my daughter having CF with her GI specialist, he told me a story of how he recently had two brothers with NO history of health problems whatsoever. I got the impression they were in their early teens. Looked healthy. They both wound up in the hospital for pancreatitis around the same time. This GI doc had them sweat tested for CF, and sure enough, both had it. The pulmonary doc at the hospital didn't believe our GI doc. Said it was impossible, since they had no history of pulmonary involvement or failure to thrive/nutritional issues. He insisted they repeat the sweat test before he would believe they had CF. Again, the sweat tests proved CF, as well as later genetic testing. This doubting doctor was at an accredited CF children's hospital, too! Goes to show, even the supposed "experts" don't always have the same gut feeling. And my GI doc experience firsthand "idiopathic pancreatitis" with NO OTHER SYMPTOMS....in BROTHERS, none-the-less!
 
N

NAVCHAPDOC

New member
Thanks for all the support and info. Today is day 3 in the hospial.so far all of her labs have come back fine except amylase and lipase which are falling by almost 50% per day. This new doc did send a CFTR, PRSS1,SPINK1 and food allergy panel off as well as a urine organic acid test. I realy like this doc. The last "specialist" we had was a friggin joke who should have his med lic pulled. Anyway thanks again, I will keep you posted.
John
 
N

NAVCHAPDOC

New member
Thanks for all the support and info. Today is day 3 in the hospial.so far all of her labs have come back fine except amylase and lipase which are falling by almost 50% per day. This new doc did send a CFTR, PRSS1,SPINK1 and food allergy panel off as well as a urine organic acid test. I realy like this doc. The last "specialist" we had was a friggin joke who should have his med lic pulled. Anyway thanks again, I will keep you posted.
John
 
N

NAVCHAPDOC

New member
Thanks for all the support and info. Today is day 3 in the hospial.so far all of her labs have come back fine except amylase and lipase which are falling by almost 50% per day. This new doc did send a CFTR, PRSS1,SPINK1 and food allergy panel off as well as a urine organic acid test. I realy like this doc. The last "specialist" we had was a friggin joke who should have his med lic pulled. Anyway thanks again, I will keep you posted.
<br />John
 
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