My DS (13 yr.old) had a kidney stone three weeks ago and they discovered fatty liver (on a CT). We went to his CF clinic last week and his Dr. told me that fatty liver definitely goes along with CF as well as kidney stones. He also had an elevated fasting glucose and high hemoglobin A1c which indicates possible diabetes. He cultures Staph and Hflu and has had low elastase. He's has terrible reflux since birth. He has had bronchiectasis and chronis sinus disease on CT's. We are waiting on 72hr fat fecal results and his latest culture from last week. <font color="#000000">So much for Atypical....</font><font color="#000000" size="3" face="Times New Roman"></font><br>
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So Much for Atypical CF...
- Thread starter amyr
- Start date
My DS (13 yr.old) had a kidney stone three weeks ago and they discovered fatty liver (on a CT). We went to his CF clinic last week and his Dr. told me that fatty liver definitely goes along with CF as well as kidney stones. He also had an elevated fasting glucose and high hemoglobin A1c which indicates possible diabetes. He cultures Staph and Hflu and has had low elastase. He's has terrible reflux since birth.He has had bronchiectasis and chronis sinus disease on CT's.We are waiting on 72hr fat fecal results and his latest culture from last week. <font color="#000000">So much for Atypical....</font><font color="#000000" size="3" face="Times New Roman"></font><br>
My DS (13 yr.old) had a kidney stone three weeks ago and they discovered fatty liver (on a CT). We went to his CF clinic last week and his Dr. told me that fatty liver definitely goes along with CF as well as kidney stones. He also had an elevated fasting glucose and high hemoglobin A1c which indicates possible diabetes. He cultures Staph and Hflu and has had low elastase. He's has terrible reflux since birth.He has had bronchiectasis and chronis sinus disease on CT's.We are waiting on 72hr fat fecal results and his latest culture from last week. <p><font color="#000000">So much for Atypical....</font><p><font color="#000000" size="3" face="Times New Roman"></font><br>
I'm curious if you will see an improvement in treatments now that the dx changed from crms to cf. Keep me updated, I'm still in the diagnosing process. You already know my story, my daughter tested positive on colon tissue test but b/c it's not (as of yet) used as a diagnosic test for cf, she is dx with crms. Next year the test is suppose to be a diagnostic test. So far ALL of my daughter's sx are GI.
Definitely keep me updated.
Definitely keep me updated.
I'm curious if you will see an improvement in treatments now that the dx changed from crms to cf. Keep me updated, I'm still in the diagnosing process. You already know my story, my daughter tested positive on colon tissue test but b/c it's not (as of yet) used as a diagnosic test for cf, she is dx with crms. Next year the test is suppose to be a diagnostic test. So far ALL of my daughter's sx are GI.
Definitely keep me updated.
Definitely keep me updated.
I'm curious if you will see an improvement in treatments now that the dx changed from crms to cf. Keep me updated, I'm still in the diagnosing process. You already know my story, my daughter tested positive on colon tissue test but b/c it's not (as of yet) used as a diagnosic test for cf, she is dx with crms. Next year the test is suppose to be a diagnostic test. So far ALL of my daughter's sx are GI.
<br />Definitely keep me updated.
<br />Definitely keep me updated.
I'm sorry your son has so much going on with him. It's always so hard to add yet more to the list of challenges we face.
Many of the previously dx'ed symptoms are classic for a straightforward CF diagnosis as it is- pancreatic insufficiency as indicated by elastase levels, lung disease as indicated by bronchiectasis, sinus disease as evidenced by CT findings are all hallmarks for CF. To be honest it's been a complete mystery to me as to why they've held onto an atypical dx for him for soooo long.
I hope they are able to address these findings asap and find effective tx.
Many of the previously dx'ed symptoms are classic for a straightforward CF diagnosis as it is- pancreatic insufficiency as indicated by elastase levels, lung disease as indicated by bronchiectasis, sinus disease as evidenced by CT findings are all hallmarks for CF. To be honest it's been a complete mystery to me as to why they've held onto an atypical dx for him for soooo long.
I hope they are able to address these findings asap and find effective tx.
I'm sorry your son has so much going on with him. It's always so hard to add yet more to the list of challenges we face.
Many of the previously dx'ed symptoms are classic for a straightforward CF diagnosis as it is- pancreatic insufficiency as indicated by elastase levels, lung disease as indicated by bronchiectasis, sinus disease as evidenced by CT findings are all hallmarks for CF. To be honest it's been a complete mystery to me as to why they've held onto an atypical dx for him for soooo long.
I hope they are able to address these findings asap and find effective tx.
Many of the previously dx'ed symptoms are classic for a straightforward CF diagnosis as it is- pancreatic insufficiency as indicated by elastase levels, lung disease as indicated by bronchiectasis, sinus disease as evidenced by CT findings are all hallmarks for CF. To be honest it's been a complete mystery to me as to why they've held onto an atypical dx for him for soooo long.
I hope they are able to address these findings asap and find effective tx.
I'm sorry your son has so much going on with him. It's always so hard to add yet more to the list of challenges we face.
<br />
<br />Many of the previously dx'ed symptoms are classic for a straightforward CF diagnosis as it is- pancreatic insufficiency as indicated by elastase levels, lung disease as indicated by bronchiectasis, sinus disease as evidenced by CT findings are all hallmarks for CF. To be honest it's been a complete mystery to me as to why they've held onto an atypical dx for him for soooo long.
<br />
<br />I hope they are able to address these findings asap and find effective tx.
<br />
<br />Many of the previously dx'ed symptoms are classic for a straightforward CF diagnosis as it is- pancreatic insufficiency as indicated by elastase levels, lung disease as indicated by bronchiectasis, sinus disease as evidenced by CT findings are all hallmarks for CF. To be honest it's been a complete mystery to me as to why they've held onto an atypical dx for him for soooo long.
<br />
<br />I hope they are able to address these findings asap and find effective tx.
Cultures for all three just mixed resp flora so that's fantastic news!! We are going to head to the GI/liver specialist and then deal with the glucose issue. I read a very interesting journal last night that discussed how kidney stones are common in CF and it's the PI that's to blame. I'll take clean lungs for now<img src="i/expressions/face-icon-small-smile.gif" border="0">
Cultures for all three just mixed resp flora so that's fantastic news!! We are going to head to the GI/liver specialist and then deal with the glucose issue. I read a very interesting journal last night that discussed how kidney stones are common in CF and it's the PI that's to blame. I'll take clean lungs for now<img src="i/expressions/face-icon-small-smile.gif" border="0">