Should I push for testing?

[mom24cjs]

Thank you for reassuring me that I'm not losing my mind. I will be making her an appointment (with a different doctor) first thing in the morning. I will keep you updated on what they say.

 

[mom24cjs]

Thank you for reassuring me that I'm not losing my mind. I will be making her an appointment (with a different doctor) first thing in the morning. I will keep you updated on what they say.

 

[mom24cjs]

Ok so here is our update! I switched her to the doc where my other kids go. She was not overly concerned about her weight because she showed about 10th% and a fairly steady curve. She did order a chest x-ray (came back negative), CBC, TSH, CMB & urinalysis. She was not concerned about CF due to the fact of only 2 respiratory illnesses in her 6 months. I do know from you wonderful people that she as well is not up to date on CF info thinking the newborn screen would cover it.

I kept a journal of feedings & bm's for a week, she had 17 stools and feeds every 3 hours= 8x/day. I am going to get the fecal fat test done to check for malabsorbtion. From weighing her after a feed she takes about 6oz-8oz/feed = 48-64oz in 24hours plus solids 2x/day.

The nurse called back today & all of her labs were normal except an elevated liver enzyme. Have any of you ever dealt with that before? We have an u/s on Tues. but I doubt that shows anything because my other daughter had the same thing for a year & after specialists & numerous tests never found a cause.

Do I need a referral to get her into a CF center or can I just schedule that on my own?

Thanks for helping me sort all of this out.

 

[mom24cjs]

Ok so here is our update! I switched her to the doc where my other kids go. She was not overly concerned about her weight because she showed about 10th% and a fairly steady curve. She did order a chest x-ray (came back negative), CBC, TSH, CMB & urinalysis. She was not concerned about CF due to the fact of only 2 respiratory illnesses in her 6 months. I do know from you wonderful people that she as well is not up to date on CF info thinking the newborn screen would cover it.

I kept a journal of feedings & bm's for a week, she had 17 stools and feeds every 3 hours= 8x/day. I am going to get the fecal fat test done to check for malabsorbtion. From weighing her after a feed she takes about 6oz-8oz/feed = 48-64oz in 24hours plus solids 2x/day.

The nurse called back today & all of her labs were normal except an elevated liver enzyme. Have any of you ever dealt with that before? We have an u/s on Tues. but I doubt that shows anything because my other daughter had the same thing for a year & after specialists & numerous tests never found a cause.

Do I need a referral to get her into a CF center or can I just schedule that on my own?

Thanks for helping me sort all of this out.

 

[Anomie]

I think you need a referall. Thats usually the way it is for specialists. Alot of regular physicians and x-ray technicians saw my daughters x-ray from when she had her pneumonia and didn't see anything wrong. The pulmonologists took one look at it and saw bronchiectasis (permanent lung damage). Push for a sweat test and if she fails it she'll be seeing a cf doctor real quick. REGULAR DOCTORS KNOW NOTHING ABOUT CF. Most of them still believe its only a childhood disease. Its also possible to pass a sweat test and still have cf disease.

 

[Anomie]

I think you need a referall. Thats usually the way it is for specialists. Alot of regular physicians and x-ray technicians saw my daughters x-ray from when she had her pneumonia and didn't see anything wrong. The pulmonologists took one look at it and saw bronchiectasis (permanent lung damage). Push for a sweat test and if she fails it she'll be seeing a cf doctor real quick. REGULAR DOCTORS KNOW NOTHING ABOUT CF. Most of them still believe its only a childhood disease. Its also possible to pass a sweat test and still have cf disease.

 

[Printer]

Good job Anomie.

Bill

 

[Printer]

Good job Anomie.

Bill