Could we be on the road to CF?

RebeccaRose

New member
Thanks so much Jen, that is a very sweet comment. I'm so glad to hear you are where you want to be with your DD's health, it's not easy to see them sick is it.

I didn't mean to imply I wanted to be babied or for it to appear that I was overly needy. Quite the opposite actually, I believe knowledge is power and it's my job to arm myself and what better place to do it that here with people on the front lines. So thanks for all the advice everyone. She ended back at the pediatricians office today with an allergic reaction to the Bactrim. And also another fever and she threw up this morning. So we are addressing the reaction and also the Dr is getting us appointments for an allergist in town and the CF Clinic that's 2 hrs away. He said the appt for the allergist here will come up before the other so at least we'll know where we stand on that front before we get to the Clinic. I'll let you know how it goes, I hope it doesn't take too long to get in. I guess the nurse will call me tomorrow with those appts.
 

RebeccaRose

New member
Thanks so much Jen, that is a very sweet comment. I'm so glad to hear you are where you want to be with your DD's health, it's not easy to see them sick is it.

I didn't mean to imply I wanted to be babied or for it to appear that I was overly needy. Quite the opposite actually, I believe knowledge is power and it's my job to arm myself and what better place to do it that here with people on the front lines. So thanks for all the advice everyone. She ended back at the pediatricians office today with an allergic reaction to the Bactrim. And also another fever and she threw up this morning. So we are addressing the reaction and also the Dr is getting us appointments for an allergist in town and the CF Clinic that's 2 hrs away. He said the appt for the allergist here will come up before the other so at least we'll know where we stand on that front before we get to the Clinic. I'll let you know how it goes, I hope it doesn't take too long to get in. I guess the nurse will call me tomorrow with those appts.
 

CJPsMom

New member
The others are right in getting the testing done.
I'll also let you know that the enzymes don't necessarily clear up the constipation. My little guy is 15 months old and on enzymes & Miralax daily.
 

CJPsMom

New member
The others are right in getting the testing done.
I'll also let you know that the enzymes don't necessarily clear up the constipation. My little guy is 15 months old and on enzymes & Miralax daily.
 

CrisDopher

New member
Try not to self-diagnose based on things you read online that sound like what your daughter is going through. There are dozens of possible reasons for each of her problems and the likelihood that one disease is causing all of those is very slim. However, as others have stated, I'd certainly contact your local CF clinic and have her seen - with the hope that they can definitively RULE OUT cystic fibrosis.

More important, they may take your daughter's case and begin to treat her even before testing, as they have experience in handling cases with multiple systemic problems, as few other clinics do. It seems like your current doctors have largely been treating with tunnel vision to whatever one particular problem your daughter is seen for that day and are also being somewhat dismissive.

Finally, don't be too quick to subscribe everything to intractible health issues like CF or allergies (though, yeah, allergies do sound pretty likely). Kids get coughs. They get ear infections. These come and go. The important task is to screen out what's truly unusual (the digestive issues) against the background radiation of regular childhood sniffles and hacks.

Good luck.
 

CrisDopher

New member
Try not to self-diagnose based on things you read online that sound like what your daughter is going through. There are dozens of possible reasons for each of her problems and the likelihood that one disease is causing all of those is very slim. However, as others have stated, I'd certainly contact your local CF clinic and have her seen - with the hope that they can definitively RULE OUT cystic fibrosis.

More important, they may take your daughter's case and begin to treat her even before testing, as they have experience in handling cases with multiple systemic problems, as few other clinics do. It seems like your current doctors have largely been treating with tunnel vision to whatever one particular problem your daughter is seen for that day and are also being somewhat dismissive.

Finally, don't be too quick to subscribe everything to intractible health issues like CF or allergies (though, yeah, allergies do sound pretty likely). Kids get coughs. They get ear infections. These come and go. The important task is to screen out what's truly unusual (the digestive issues) against the background radiation of regular childhood sniffles and hacks.

Good luck.
 
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