The Specialist Merry-Go-round

william1217

New member
After two borderline sweat tests, one negative, we are doing the Specialist Merry-Go-Round. My sons bone scan showed a two year growth delay but the Pediatric Endcronoglist feels it has nothing to do with growth hormone. He felt we needed to see the Ped. Pulm and GI. So to the Ped Pulm M.D. whom at first did not think his coughing (present at the time of the appt) had anything to do with his lungs, just post nasal drip. After an xray, in the nurses came with a pulse oximeter and a Xoponex treatment. New orders were for Xoponex QID, Pulmicort BID, Orapred bid x 8 days and a decongestant to top it off. And back to see her in a week. She did however draw blood for the genetic CF testing. She says it doesn't look like typical CF to her but still drew. (but then again what is typical CF). We go back to her on Friday and the Ped GI the following Friday. Is this typical- running around to all the different specialists trying to, well I am not sure what.
 

william1217

New member
After two borderline sweat tests, one negative, we are doing the Specialist Merry-Go-Round. My sons bone scan showed a two year growth delay but the Pediatric Endcronoglist feels it has nothing to do with growth hormone. He felt we needed to see the Ped. Pulm and GI. So to the Ped Pulm M.D. whom at first did not think his coughing (present at the time of the appt) had anything to do with his lungs, just post nasal drip. After an xray, in the nurses came with a pulse oximeter and a Xoponex treatment. New orders were for Xoponex QID, Pulmicort BID, Orapred bid x 8 days and a decongestant to top it off. And back to see her in a week. She did however draw blood for the genetic CF testing. She says it doesn't look like typical CF to her but still drew. (but then again what is typical CF). We go back to her on Friday and the Ped GI the following Friday. Is this typical- running around to all the different specialists trying to, well I am not sure what.
 

william1217

New member
After two borderline sweat tests, one negative, we are doing the Specialist Merry-Go-Round. My sons bone scan showed a two year growth delay but the Pediatric Endcronoglist feels it has nothing to do with growth hormone. He felt we needed to see the Ped. Pulm and GI. So to the Ped Pulm M.D. whom at first did not think his coughing (present at the time of the appt) had anything to do with his lungs, just post nasal drip. After an xray, in the nurses came with a pulse oximeter and a Xoponex treatment. New orders were for Xoponex QID, Pulmicort BID, Orapred bid x 8 days and a decongestant to top it off. And back to see her in a week. She did however draw blood for the genetic CF testing. She says it doesn't look like typical CF to her but still drew. (but then again what is typical CF). We go back to her on Friday and the Ped GI the following Friday. Is this typical- running around to all the different specialists trying to, well I am not sure what.
 

debs2girls

New member
That is the way it has been/is for alot of us on this site. I hope you get to the bottom of this very soon and your son gets the treatments and medicine that will help him.
 

debs2girls

New member
That is the way it has been/is for alot of us on this site. I hope you get to the bottom of this very soon and your son gets the treatments and medicine that will help him.
 

debs2girls

New member
That is the way it has been/is for alot of us on this site. I hope you get to the bottom of this very soon and your son gets the treatments and medicine that will help him.
 

NoExcuses

New member
I still can't figure out why sweat tests are done.

Let us know how the genetic test goes. Make sure it's the most extensive panel possible (testing for hundreds of genes, not just 40 or so)
 

NoExcuses

New member
I still can't figure out why sweat tests are done.

Let us know how the genetic test goes. Make sure it's the most extensive panel possible (testing for hundreds of genes, not just 40 or so)
 

NoExcuses

New member
I still can't figure out why sweat tests are done.

Let us know how the genetic test goes. Make sure it's the most extensive panel possible (testing for hundreds of genes, not just 40 or so)
 

Alyssa

New member
So what if it doesn't "look" like typical CF -- there are many people out there that are not typical. Both in a general sense as well as a technical sense. There is a definite classification for "A-typical CF" My kids are diagnosed with "A-typical mild variant CF" If anything even remotely looks like CF they should be checking for it "typical or not" We went for 8 years undiagnosed because my daughter didn't look like typical CF.

Keep pursuing things with your skeptical doctor. That's good she did the blood draw but I say the same thing as the other poster.... make sure they are doing a full panel, not just a screening. With how skeptical she sounds, chances are she only ordered a limited test. There are 1500 mutations to look for -- it does you no good to only look for a few of them. If they only find one or even none, you will be left still wanting to know for sure.
 

Alyssa

New member
So what if it doesn't "look" like typical CF -- there are many people out there that are not typical. Both in a general sense as well as a technical sense. There is a definite classification for "A-typical CF" My kids are diagnosed with "A-typical mild variant CF" If anything even remotely looks like CF they should be checking for it "typical or not" We went for 8 years undiagnosed because my daughter didn't look like typical CF.

Keep pursuing things with your skeptical doctor. That's good she did the blood draw but I say the same thing as the other poster.... make sure they are doing a full panel, not just a screening. With how skeptical she sounds, chances are she only ordered a limited test. There are 1500 mutations to look for -- it does you no good to only look for a few of them. If they only find one or even none, you will be left still wanting to know for sure.
 

Alyssa

New member
So what if it doesn't "look" like typical CF -- there are many people out there that are not typical. Both in a general sense as well as a technical sense. There is a definite classification for "A-typical CF" My kids are diagnosed with "A-typical mild variant CF" If anything even remotely looks like CF they should be checking for it "typical or not" We went for 8 years undiagnosed because my daughter didn't look like typical CF.

Keep pursuing things with your skeptical doctor. That's good she did the blood draw but I say the same thing as the other poster.... make sure they are doing a full panel, not just a screening. With how skeptical she sounds, chances are she only ordered a limited test. There are 1500 mutations to look for -- it does you no good to only look for a few of them. If they only find one or even none, you will be left still wanting to know for sure.
 

PACmommy

New member
The thing that I have learned since our daughter's diagnosis five months ago is to trust your instincts and be tenacious. Our daughter is now three and I had been saying since day one that something wasn't right. I was made to feel like an idiot by my doctor as well as family members who thought I was trying to get attention (What a way to go about it!). I am now glad that I persued more tests and didn't listen to those that said your daughter is healthy, looks great, or doesn't look like a "typical" CF patient.
 

PACmommy

New member
The thing that I have learned since our daughter's diagnosis five months ago is to trust your instincts and be tenacious. Our daughter is now three and I had been saying since day one that something wasn't right. I was made to feel like an idiot by my doctor as well as family members who thought I was trying to get attention (What a way to go about it!). I am now glad that I persued more tests and didn't listen to those that said your daughter is healthy, looks great, or doesn't look like a "typical" CF patient.
 

PACmommy

New member
The thing that I have learned since our daughter's diagnosis five months ago is to trust your instincts and be tenacious. Our daughter is now three and I had been saying since day one that something wasn't right. I was made to feel like an idiot by my doctor as well as family members who thought I was trying to get attention (What a way to go about it!). I am now glad that I persued more tests and didn't listen to those that said your daughter is healthy, looks great, or doesn't look like a "typical" CF patient.
 

Leigh

New member
Thank you Alyssa for taking the time to share your knowledge to William1217. It was if she was writing MY story! I am going to ask my ped. today for a "full panel blood draw". But, I know he will say, "your son is thriving and gaining weight". How do I respond to this. The ped., asthma dr, and Children's Hosp. ER head dr all have said this. My 4 month old son has had a sweat test at an accredited lab, but a lot of his symptoms are sounding like C.F. Leigh
 

Leigh

New member
Thank you Alyssa for taking the time to share your knowledge to William1217. It was if she was writing MY story! I am going to ask my ped. today for a "full panel blood draw". But, I know he will say, "your son is thriving and gaining weight". How do I respond to this. The ped., asthma dr, and Children's Hosp. ER head dr all have said this. My 4 month old son has had a sweat test at an accredited lab, but a lot of his symptoms are sounding like C.F. Leigh
 

Leigh

New member
Thank you Alyssa for taking the time to share your knowledge to William1217. It was if she was writing MY story! I am going to ask my ped. today for a "full panel blood draw". But, I know he will say, "your son is thriving and gaining weight". How do I respond to this. The ped., asthma dr, and Children's Hosp. ER head dr all have said this. My 4 month old son has had a sweat test at an accredited lab, but a lot of his symptoms are sounding like C.F. Leigh
 

OperaMama

New member
Oh, for pete's sake! CF pre-natal screening is getting on the books state by state, so, just because you've already got the kid the doctors are balking? I mean, it's time to switch pediatricians!!! I'm so sorry what parents are put through when we are NOT the medical "experts," and yet, the care of the child MUST be parent-driven... Keep fighting the good fight, dear!!!
 

OperaMama

New member
Oh, for pete's sake! CF pre-natal screening is getting on the books state by state, so, just because you've already got the kid the doctors are balking? I mean, it's time to switch pediatricians!!! I'm so sorry what parents are put through when we are NOT the medical "experts," and yet, the care of the child MUST be parent-driven... Keep fighting the good fight, dear!!!
 
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