ready to fall apart & need feedback

[biz]

thanks Heather, all your suggestions helped. aidan was tested for Celiac also and that came back negative. now they did test him for inflammatory bowel and one of the "markers" came up positive. and they want to do an upper GI test. make him drink all this barium and watch it go thru. aidan does not show any signs of inflammatory bowel. hes never in pain after eating or when he has a bm. he is very regular. has never had any problems with bm. i dont know if something like inflammatory bowel has anything to do with weight gain? there is a family history on my side of Chrones and Colitis (both my sisters) am i an idiot for not getting the test done for the inflamm bowel? hes just not presenting w/ any symtoms of it. and believe me ive read up on them.
--------------------------------------------------------------------------------
Elizabeth mama to Aidan w/ CF 2yo

 

[biz]

thanks Heather, all your suggestions helped. aidan was tested for Celiac also and that came back negative. now they did test him for inflammatory bowel and one of the "markers" came up positive. and they want to do an upper GI test. make him drink all this barium and watch it go thru. aidan does not show any signs of inflammatory bowel. hes never in pain after eating or when he has a bm. he is very regular. has never had any problems with bm. i dont know if something like inflammatory bowel has anything to do with weight gain? there is a family history on my side of Chrones and Colitis (both my sisters) am i an idiot for not getting the test done for the inflamm bowel? hes just not presenting w/ any symtoms of it. and believe me ive read up on them.
--------------------------------------------------------------------------------
Elizabeth mama to Aidan w/ CF 2yo

 

[biz]

thanks Heather, all your suggestions helped. aidan was tested for Celiac also and that came back negative. now they did test him for inflammatory bowel and one of the "markers" came up positive. and they want to do an upper GI test. make him drink all this barium and watch it go thru. aidan does not show any signs of inflammatory bowel. hes never in pain after eating or when he has a bm. he is very regular. has never had any problems with bm. i dont know if something like inflammatory bowel has anything to do with weight gain? there is a family history on my side of Chrones and Colitis (both my sisters) am i an idiot for not getting the test done for the inflamm bowel? hes just not presenting w/ any symtoms of it. and believe me ive read up on them.
--------------------------------------------------------------------------------
Elizabeth mama to Aidan w/ CF 2yo

 

[biz]

thanks Heather, all your suggestions helped. aidan was tested for Celiac also and that came back negative. now they did test him for inflammatory bowel and one of the "markers" came up positive. and they want to do an upper GI test. make him drink all this barium and watch it go thru. aidan does not show any signs of inflammatory bowel. hes never in pain after eating or when he has a bm. he is very regular. has never had any problems with bm. i dont know if something like inflammatory bowel has anything to do with weight gain? there is a family history on my side of Chrones and Colitis (both my sisters) am i an idiot for not getting the test done for the inflamm bowel? hes just not presenting w/ any symtoms of it. and believe me ive read up on them.
--------------------------------------------------------------------------------
Elizabeth mama to Aidan w/ CF 2yo

 

[biz]

thanks Heather, all your suggestions helped. aidan was tested for Celiac also and that came back negative. now they did test him for inflammatory bowel and one of the "markers" came up positive. and they want to do an upper GI test. make him drink all this barium and watch it go thru. aidan does not show any signs of inflammatory bowel. hes never in pain after eating or when he has a bm. he is very regular. has never had any problems with bm. i dont know if something like inflammatory bowel has anything to do with weight gain? there is a family history on my side of Chrones and Colitis (both my sisters) am i an idiot for not getting the test done for the inflamm bowel? hes just not presenting w/ any symtoms of it. and believe me ive read up on them.
--------------------------------------------------------------------------------
Elizabeth mama to Aidan w/ CF 2yo

 

[biz]

<b>UPDATE!</b> We went to Childrens today. Aidan has gained 10 ounces in two months, and the three months prior to that he had only gain 2 ounces, and he is dropping in height too down to the 25th percential. so after long discussions and a lot of questions from me, the GI wants to do an upper GI to look for inflammation, and anything else that could be going wrong. the ANKA marker came up positive in a previous test and that raises a flag for inflamm bowel, plus hes not growing and if we dont catch up soon with the weight, hes gonna be not as healthy as he is now.
After that test she also want to an Endoscopy. ok so for this one he has to be put under so they can stick a camera up his bum and down his throat to take a look around. i am so freaking out right now. ive got all the medical termonology on these test and completly understand everything the doctor has explained to me. But i am hoping to get another view from a parent who has gone thru these test with their toddler, and can talk me off the edge here. thanks hope to hear!
---------------------------------------------------------------------------
Elizabeth mama to Aidan 2

 

[biz]

<b>UPDATE!</b> We went to Childrens today. Aidan has gained 10 ounces in two months, and the three months prior to that he had only gain 2 ounces, and he is dropping in height too down to the 25th percential. so after long discussions and a lot of questions from me, the GI wants to do an upper GI to look for inflammation, and anything else that could be going wrong. the ANKA marker came up positive in a previous test and that raises a flag for inflamm bowel, plus hes not growing and if we dont catch up soon with the weight, hes gonna be not as healthy as he is now.
After that test she also want to an Endoscopy. ok so for this one he has to be put under so they can stick a camera up his bum and down his throat to take a look around. i am so freaking out right now. ive got all the medical termonology on these test and completly understand everything the doctor has explained to me. But i am hoping to get another view from a parent who has gone thru these test with their toddler, and can talk me off the edge here. thanks hope to hear!
---------------------------------------------------------------------------
Elizabeth mama to Aidan 2

 

[biz]

<b>UPDATE!</b> We went to Childrens today. Aidan has gained 10 ounces in two months, and the three months prior to that he had only gain 2 ounces, and he is dropping in height too down to the 25th percential. so after long discussions and a lot of questions from me, the GI wants to do an upper GI to look for inflammation, and anything else that could be going wrong. the ANKA marker came up positive in a previous test and that raises a flag for inflamm bowel, plus hes not growing and if we dont catch up soon with the weight, hes gonna be not as healthy as he is now.
After that test she also want to an Endoscopy. ok so for this one he has to be put under so they can stick a camera up his bum and down his throat to take a look around. i am so freaking out right now. ive got all the medical termonology on these test and completly understand everything the doctor has explained to me. But i am hoping to get another view from a parent who has gone thru these test with their toddler, and can talk me off the edge here. thanks hope to hear!
---------------------------------------------------------------------------
Elizabeth mama to Aidan 2

 

[biz]

<b>UPDATE!</b> We went to Childrens today. Aidan has gained 10 ounces in two months, and the three months prior to that he had only gain 2 ounces, and he is dropping in height too down to the 25th percential. so after long discussions and a lot of questions from me, the GI wants to do an upper GI to look for inflammation, and anything else that could be going wrong. the ANKA marker came up positive in a previous test and that raises a flag for inflamm bowel, plus hes not growing and if we dont catch up soon with the weight, hes gonna be not as healthy as he is now.
After that test she also want to an Endoscopy. ok so for this one he has to be put under so they can stick a camera up his bum and down his throat to take a look around. i am so freaking out right now. ive got all the medical termonology on these test and completly understand everything the doctor has explained to me. But i am hoping to get another view from a parent who has gone thru these test with their toddler, and can talk me off the edge here. thanks hope to hear!
---------------------------------------------------------------------------
Elizabeth mama to Aidan 2

 

[biz]

<b>UPDATE!</b> We went to Childrens today. Aidan has gained 10 ounces in two months, and the three months prior to that he had only gain 2 ounces, and he is dropping in height too down to the 25th percential. so after long discussions and a lot of questions from me, the GI wants to do an upper GI to look for inflammation, and anything else that could be going wrong. the ANKA marker came up positive in a previous test and that raises a flag for inflamm bowel, plus hes not growing and if we dont catch up soon with the weight, hes gonna be not as healthy as he is now.
After that test she also want to an Endoscopy. ok so for this one he has to be put under so they can stick a camera up his bum and down his throat to take a look around. i am so freaking out right now. ive got all the medical termonology on these test and completly understand everything the doctor has explained to me. But i am hoping to get another view from a parent who has gone thru these test with their toddler, and can talk me off the edge here. thanks hope to hear!
---------------------------------------------------------------------------
Elizabeth mama to Aidan 2

 

[Mommafirst]

Again, we are right there on the same chapter of this stupid book, Elizabeth. Alyssa goes in tomorrow for an endoscope and bronch as well. I don't have any been-there-done-that advice, but I might after tomorrow.

 

[Mommafirst]

Again, we are right there on the same chapter of this stupid book, Elizabeth. Alyssa goes in tomorrow for an endoscope and bronch as well. I don't have any been-there-done-that advice, but I might after tomorrow.

 

[Mommafirst]

Again, we are right there on the same chapter of this stupid book, Elizabeth. Alyssa goes in tomorrow for an endoscope and bronch as well. I don't have any been-there-done-that advice, but I might after tomorrow.

 

[Mommafirst]

Again, we are right there on the same chapter of this stupid book, Elizabeth. Alyssa goes in tomorrow for an endoscope and bronch as well. I don't have any been-there-done-that advice, but I might after tomorrow.

 

[Mommafirst]

Again, we are right there on the same chapter of this stupid book, Elizabeth. Alyssa goes in tomorrow for an endoscope and bronch as well. I don't have any been-there-done-that advice, but I might after tomorrow.

 

[purplemartin]

Sorry, don't have much advice but can totally relate with the problems.

Briceton has had problems with chronic/severe diarrhea since birth. He is pancreatic insufficient and takes around 42+ enzymes daily. He was diagnosed with a casein allergy at about 2 months old (lots and lots of bloody stools) but prescribed EleCare formula. The EleCare helped tremendously with the blood issues but the diarrhea continued. Briceton has had a lot of testing done, upper GI, lower GI, ultrasounds, bronchoscopes, X-rays, swallow study, biopsies, celiac testing, and so on. The celiac came back negative and the casein allergy dissolved, he now drinks cow's milk. His fecal fat test came back a whooping 72, his zinc levels where low, and his calcium levels low....but has since been started on zinc and calcium replacements and neither has made a noticeable difference. He takes Imodium on a daily basis to help with motility but that it self has only helped with SOME of the undigested food problems, not the diarrhea. He also takes Pulmozyme, Tobi, Actigall, Prevacid, Flovent, Albuterol, Vitamax, creon5, and pancrecarbMS4, and has even had the fundoplication surgery, but his weight continues to stall. Briceton was diagnosed with liver disease during all the testing in our quest to find the culprit of his diarrhea and I'm personally starting to wonder if the liver is the culprit to his troubles.

I guess basically I just wanted to let you know that your not alone and although it can be a long process (with all the testing they might throw at your child) to hang in there and I hope everything turns out well!

Wow, CF really sucks!!!!!!!!!!!!!!!!!!!

 

[purplemartin]

Sorry, don't have much advice but can totally relate with the problems.

Briceton has had problems with chronic/severe diarrhea since birth. He is pancreatic insufficient and takes around 42+ enzymes daily. He was diagnosed with a casein allergy at about 2 months old (lots and lots of bloody stools) but prescribed EleCare formula. The EleCare helped tremendously with the blood issues but the diarrhea continued. Briceton has had a lot of testing done, upper GI, lower GI, ultrasounds, bronchoscopes, X-rays, swallow study, biopsies, celiac testing, and so on. The celiac came back negative and the casein allergy dissolved, he now drinks cow's milk. His fecal fat test came back a whooping 72, his zinc levels where low, and his calcium levels low....but has since been started on zinc and calcium replacements and neither has made a noticeable difference. He takes Imodium on a daily basis to help with motility but that it self has only helped with SOME of the undigested food problems, not the diarrhea. He also takes Pulmozyme, Tobi, Actigall, Prevacid, Flovent, Albuterol, Vitamax, creon5, and pancrecarbMS4, and has even had the fundoplication surgery, but his weight continues to stall. Briceton was diagnosed with liver disease during all the testing in our quest to find the culprit of his diarrhea and I'm personally starting to wonder if the liver is the culprit to his troubles.

I guess basically I just wanted to let you know that your not alone and although it can be a long process (with all the testing they might throw at your child) to hang in there and I hope everything turns out well!

Wow, CF really sucks!!!!!!!!!!!!!!!!!!!

 

[purplemartin]

Sorry, don't have much advice but can totally relate with the problems.

Briceton has had problems with chronic/severe diarrhea since birth. He is pancreatic insufficient and takes around 42+ enzymes daily. He was diagnosed with a casein allergy at about 2 months old (lots and lots of bloody stools) but prescribed EleCare formula. The EleCare helped tremendously with the blood issues but the diarrhea continued. Briceton has had a lot of testing done, upper GI, lower GI, ultrasounds, bronchoscopes, X-rays, swallow study, biopsies, celiac testing, and so on. The celiac came back negative and the casein allergy dissolved, he now drinks cow's milk. His fecal fat test came back a whooping 72, his zinc levels where low, and his calcium levels low....but has since been started on zinc and calcium replacements and neither has made a noticeable difference. He takes Imodium on a daily basis to help with motility but that it self has only helped with SOME of the undigested food problems, not the diarrhea. He also takes Pulmozyme, Tobi, Actigall, Prevacid, Flovent, Albuterol, Vitamax, creon5, and pancrecarbMS4, and has even had the fundoplication surgery, but his weight continues to stall. Briceton was diagnosed with liver disease during all the testing in our quest to find the culprit of his diarrhea and I'm personally starting to wonder if the liver is the culprit to his troubles.

I guess basically I just wanted to let you know that your not alone and although it can be a long process (with all the testing they might throw at your child) to hang in there and I hope everything turns out well!

Wow, CF really sucks!!!!!!!!!!!!!!!!!!!

 

[purplemartin]

Sorry, don't have much advice but can totally relate with the problems.

Briceton has had problems with chronic/severe diarrhea since birth. He is pancreatic insufficient and takes around 42+ enzymes daily. He was diagnosed with a casein allergy at about 2 months old (lots and lots of bloody stools) but prescribed EleCare formula. The EleCare helped tremendously with the blood issues but the diarrhea continued. Briceton has had a lot of testing done, upper GI, lower GI, ultrasounds, bronchoscopes, X-rays, swallow study, biopsies, celiac testing, and so on. The celiac came back negative and the casein allergy dissolved, he now drinks cow's milk. His fecal fat test came back a whooping 72, his zinc levels where low, and his calcium levels low....but has since been started on zinc and calcium replacements and neither has made a noticeable difference. He takes Imodium on a daily basis to help with motility but that it self has only helped with SOME of the undigested food problems, not the diarrhea. He also takes Pulmozyme, Tobi, Actigall, Prevacid, Flovent, Albuterol, Vitamax, creon5, and pancrecarbMS4, and has even had the fundoplication surgery, but his weight continues to stall. Briceton was diagnosed with liver disease during all the testing in our quest to find the culprit of his diarrhea and I'm personally starting to wonder if the liver is the culprit to his troubles.

I guess basically I just wanted to let you know that your not alone and although it can be a long process (with all the testing they might throw at your child) to hang in there and I hope everything turns out well!

Wow, CF really sucks!!!!!!!!!!!!!!!!!!!

 

[purplemartin]

Sorry, don't have much advice but can totally relate with the problems.

Briceton has had problems with chronic/severe diarrhea since birth. He is pancreatic insufficient and takes around 42+ enzymes daily. He was diagnosed with a casein allergy at about 2 months old (lots and lots of bloody stools) but prescribed EleCare formula. The EleCare helped tremendously with the blood issues but the diarrhea continued. Briceton has had a lot of testing done, upper GI, lower GI, ultrasounds, bronchoscopes, X-rays, swallow study, biopsies, celiac testing, and so on. The celiac came back negative and the casein allergy dissolved, he now drinks cow's milk. His fecal fat test came back a whooping 72, his zinc levels where low, and his calcium levels low....but has since been started on zinc and calcium replacements and neither has made a noticeable difference. He takes Imodium on a daily basis to help with motility but that it self has only helped with SOME of the undigested food problems, not the diarrhea. He also takes Pulmozyme, Tobi, Actigall, Prevacid, Flovent, Albuterol, Vitamax, creon5, and pancrecarbMS4, and has even had the fundoplication surgery, but his weight continues to stall. Briceton was diagnosed with liver disease during all the testing in our quest to find the culprit of his diarrhea and I'm personally starting to wonder if the liver is the culprit to his troubles.

I guess basically I just wanted to let you know that your not alone and although it can be a long process (with all the testing they might throw at your child) to hang in there and I hope everything turns out well!

Wow, CF really sucks!!!!!!!!!!!!!!!!!!!