Looking for some advice, BTDT stories please

[shealeighsmom]

Hi all, I am grateful to have found this resource and am looking for some direction.
My daughter Shea was a heathy baby until 2 when i stopped nursing her, then came oily, bulky BM's. We had a positive sweat test (78) and then a second test in the 40's.

We were told no CF and sent to a pediatric gastro who thought our first testing for celiac may have been a false neg and sent us for a upper gi biopsy which showed no celiac but erosion of the esophagus, white blood cells in the duedenum (spelling doesn't count does it?, lol) and presence of a chemical common to those who are predisposed to ulcers.

The dr also said that my DDs esophagus was hard to get down and felt narrow and twisty.

My DDs only symptoms are loose and bulky stools and occasional weight loss.

We were told to book another sweat test and a barium swallow. When I booked the sweat test I asked if CF ever only involves the pancreas and was told no.

I do know a bit about CF because I grew up around close friends who had CF in their family and I did work for the fundraisers but I am at a loss when trying to process this journey.

I would appreciate any comments or info that anyone wishes to share after reading my story.

Thanks for reading,

Robin

 

[shealeighsmom]

Hi all, I am grateful to have found this resource and am looking for some direction.
My daughter Shea was a heathy baby until 2 when i stopped nursing her, then came oily, bulky BM's. We had a positive sweat test (78) and then a second test in the 40's.

We were told no CF and sent to a pediatric gastro who thought our first testing for celiac may have been a false neg and sent us for a upper gi biopsy which showed no celiac but erosion of the esophagus, white blood cells in the duedenum (spelling doesn't count does it?, lol) and presence of a chemical common to those who are predisposed to ulcers.

The dr also said that my DDs esophagus was hard to get down and felt narrow and twisty.

My DDs only symptoms are loose and bulky stools and occasional weight loss.

We were told to book another sweat test and a barium swallow. When I booked the sweat test I asked if CF ever only involves the pancreas and was told no.

I do know a bit about CF because I grew up around close friends who had CF in their family and I did work for the fundraisers but I am at a loss when trying to process this journey.

I would appreciate any comments or info that anyone wishes to share after reading my story.

Thanks for reading,

Robin

 

[shealeighsmom]

Hi all, I am grateful to have found this resource and am looking for some direction.
My daughter Shea was a heathy baby until 2 when i stopped nursing her, then came oily, bulky BM's. We had a positive sweat test (78) and then a second test in the 40's.

We were told no CF and sent to a pediatric gastro who thought our first testing for celiac may have been a false neg and sent us for a upper gi biopsy which showed no celiac but erosion of the esophagus, white blood cells in the duedenum (spelling doesn't count does it?, lol) and presence of a chemical common to those who are predisposed to ulcers.

The dr also said that my DDs esophagus was hard to get down and felt narrow and twisty.

My DDs only symptoms are loose and bulky stools and occasional weight loss.

We were told to book another sweat test and a barium swallow. When I booked the sweat test I asked if CF ever only involves the pancreas and was told no.

I do know a bit about CF because I grew up around close friends who had CF in their family and I did work for the fundraisers but I am at a loss when trying to process this journey.

I would appreciate any comments or info that anyone wishes to share after reading my story.

Thanks for reading,

Robin

 

[shealeighsmom]

Hi all, I am grateful to have found this resource and am looking for some direction.
My daughter Shea was a heathy baby until 2 when i stopped nursing her, then came oily, bulky BM's. We had a positive sweat test (78) and then a second test in the 40's.

We were told no CF and sent to a pediatric gastro who thought our first testing for celiac may have been a false neg and sent us for a upper gi biopsy which showed no celiac but erosion of the esophagus, white blood cells in the duedenum (spelling doesn't count does it?, lol) and presence of a chemical common to those who are predisposed to ulcers.

The dr also said that my DDs esophagus was hard to get down and felt narrow and twisty.

My DDs only symptoms are loose and bulky stools and occasional weight loss.

We were told to book another sweat test and a barium swallow. When I booked the sweat test I asked if CF ever only involves the pancreas and was told no.

I do know a bit about CF because I grew up around close friends who had CF in their family and I did work for the fundraisers but I am at a loss when trying to process this journey.

I would appreciate any comments or info that anyone wishes to share after reading my story.

Thanks for reading,

Robin

 

[shealeighsmom]

Hi all, I am grateful to have found this resource and am looking for some direction.
<br />My daughter Shea was a heathy baby until 2 when i stopped nursing her, then came oily, bulky BM's. We had a positive sweat test (78) and then a second test in the 40's.
<br />
<br />We were told no CF and sent to a pediatric gastro who thought our first testing for celiac may have been a false neg and sent us for a upper gi biopsy which showed no celiac but erosion of the esophagus, white blood cells in the duedenum (spelling doesn't count does it?, lol) and presence of a chemical common to those who are predisposed to ulcers.
<br />
<br />The dr also said that my DDs esophagus was hard to get down and felt narrow and twisty.
<br />
<br />My DDs only symptoms are loose and bulky stools and occasional weight loss.
<br />
<br />We were told to book another sweat test and a barium swallow. When I booked the sweat test I asked if CF ever only involves the pancreas and was told no.
<br />
<br />I do know a bit about CF because I grew up around close friends who had CF in their family and I did work for the fundraisers but I am at a loss when trying to process this journey.
<br />
<br />I would appreciate any comments or info that anyone wishes to share after reading my story.
<br />
<br />Thanks for reading,
<br />
<br />Robin

 

[Mommafirst]

Oh gosh Robin, it definitely sounds like you are getting the runaround. It just shouldn't be this hard.

I think that with all the mixed information you have gotten its time to insist on genetic testing. You should ask for genetic sequencing with deletions and duplications. Ambry is the company that does the most complete version of this. Until you do this, no one can rule out CF.

I'm so surprised they told you that there is no such thing as CF with JUST pancreatic involvement. While realistically this may be true over a lifetime, it is certainly possible to have a child with CF not show lung involvement. Some adults on this site didn't develop lung issues until their 20's or beyond.

We went through the crazy multiple tests, but after 2 borderline sweats, our CF center was insistent that we go right to genetic testing and figure this all out.

I hope you are working with an accredited CF center and a similarly accredited lab associated with them. If not, the sweat tests have a good chance of making mistakes.

 

[Mommafirst]

Oh gosh Robin, it definitely sounds like you are getting the runaround. It just shouldn't be this hard.

I think that with all the mixed information you have gotten its time to insist on genetic testing. You should ask for genetic sequencing with deletions and duplications. Ambry is the company that does the most complete version of this. Until you do this, no one can rule out CF.

I'm so surprised they told you that there is no such thing as CF with JUST pancreatic involvement. While realistically this may be true over a lifetime, it is certainly possible to have a child with CF not show lung involvement. Some adults on this site didn't develop lung issues until their 20's or beyond.

We went through the crazy multiple tests, but after 2 borderline sweats, our CF center was insistent that we go right to genetic testing and figure this all out.

I hope you are working with an accredited CF center and a similarly accredited lab associated with them. If not, the sweat tests have a good chance of making mistakes.

 

[Mommafirst]

Oh gosh Robin, it definitely sounds like you are getting the runaround. It just shouldn't be this hard.

I think that with all the mixed information you have gotten its time to insist on genetic testing. You should ask for genetic sequencing with deletions and duplications. Ambry is the company that does the most complete version of this. Until you do this, no one can rule out CF.

I'm so surprised they told you that there is no such thing as CF with JUST pancreatic involvement. While realistically this may be true over a lifetime, it is certainly possible to have a child with CF not show lung involvement. Some adults on this site didn't develop lung issues until their 20's or beyond.

We went through the crazy multiple tests, but after 2 borderline sweats, our CF center was insistent that we go right to genetic testing and figure this all out.

I hope you are working with an accredited CF center and a similarly accredited lab associated with them. If not, the sweat tests have a good chance of making mistakes.

 

[Mommafirst]

Oh gosh Robin, it definitely sounds like you are getting the runaround. It just shouldn't be this hard.

I think that with all the mixed information you have gotten its time to insist on genetic testing. You should ask for genetic sequencing with deletions and duplications. Ambry is the company that does the most complete version of this. Until you do this, no one can rule out CF.

I'm so surprised they told you that there is no such thing as CF with JUST pancreatic involvement. While realistically this may be true over a lifetime, it is certainly possible to have a child with CF not show lung involvement. Some adults on this site didn't develop lung issues until their 20's or beyond.

We went through the crazy multiple tests, but after 2 borderline sweats, our CF center was insistent that we go right to genetic testing and figure this all out.

I hope you are working with an accredited CF center and a similarly accredited lab associated with them. If not, the sweat tests have a good chance of making mistakes.

 

[Mommafirst]

Oh gosh Robin, it definitely sounds like you are getting the runaround. It just shouldn't be this hard.
<br />
<br />I think that with all the mixed information you have gotten its time to insist on genetic testing. You should ask for genetic sequencing with deletions and duplications. Ambry is the company that does the most complete version of this. Until you do this, no one can rule out CF.
<br />
<br />I'm so surprised they told you that there is no such thing as CF with JUST pancreatic involvement. While realistically this may be true over a lifetime, it is certainly possible to have a child with CF not show lung involvement. Some adults on this site didn't develop lung issues until their 20's or beyond.
<br />
<br />We went through the crazy multiple tests, but after 2 borderline sweats, our CF center was insistent that we go right to genetic testing and figure this all out.
<br />
<br />I hope you are working with an accredited CF center and a similarly accredited lab associated with them. If not, the sweat tests have a good chance of making mistakes.

 

[shealeighsmom]

Thanks Momma,

The second sweat test and this next one are with Sick kids in Toronto. The first test was at my regional health care centre.

When I am there i am going to ask for info on getting the genetic testing done.

 

[shealeighsmom]

Thanks Momma,

The second sweat test and this next one are with Sick kids in Toronto. The first test was at my regional health care centre.

When I am there i am going to ask for info on getting the genetic testing done.

 

[shealeighsmom]

Thanks Momma,

The second sweat test and this next one are with Sick kids in Toronto. The first test was at my regional health care centre.

When I am there i am going to ask for info on getting the genetic testing done.

 

[shealeighsmom]

Thanks Momma,

The second sweat test and this next one are with Sick kids in Toronto. The first test was at my regional health care centre.

When I am there i am going to ask for info on getting the genetic testing done.

 

[shealeighsmom]

Thanks Momma,
<br />
<br />The second sweat test and this next one are with Sick kids in Toronto. The first test was at my regional health care centre.
<br />
<br />When I am there i am going to ask for info on getting the genetic testing done.
<br />
<br />

 

[shealeighsmom]

I just realised I posted here last year as Sheasmom after the first sweat test.

Back then I was convinced she had CF, then convinced she didn't after the second test at Sick Kids.

Round and round we go, where we stop no one knows.....<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[shealeighsmom]

I just realised I posted here last year as Sheasmom after the first sweat test.

Back then I was convinced she had CF, then convinced she didn't after the second test at Sick Kids.

Round and round we go, where we stop no one knows.....<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[shealeighsmom]

I just realised I posted here last year as Sheasmom after the first sweat test.

Back then I was convinced she had CF, then convinced she didn't after the second test at Sick Kids.

Round and round we go, where we stop no one knows.....<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[shealeighsmom]

I just realised I posted here last year as Sheasmom after the first sweat test.

Back then I was convinced she had CF, then convinced she didn't after the second test at Sick Kids.

Round and round we go, where we stop no one knows.....<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[shealeighsmom]

I just realised I posted here last year as Sheasmom after the first sweat test.
<br />
<br />Back then I was convinced she had CF, then convinced she didn't after the second test at Sick Kids.
<br />
<br />Round and round we go, where we stop no one knows.....<img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />