Waiting for Diagnosis

bdd9623 · May 21, 2009

This is my first time on the website chat rooms. I have an 8 yr old son who has dropped from 25% in weight to the 3%. He has had pneumonia/bronchitis 4 times in past year. His lungs are enlarged (by x-ray). He has polyps in his nose. Fought low grade fevers for 3 months. I had to push, but it looks like he will be positive for CF. He had the sweat test at CHOP and it came out high borderline, 56. Tomorrow I take him for genetic testing.

Anyone have a similar story? Advice?

bdd9623 · May 21, 2009

This is my first time on the website chat rooms. I have an 8 yr old son who has dropped from 25% in weight to the 3%. He has had pneumonia/bronchitis 4 times in past year. His lungs are enlarged (by x-ray). He has polyps in his nose. Fought low grade fevers for 3 months. I had to push, but it looks like he will be positive for CF. He had the sweat test at CHOP and it came out high borderline, 56. Tomorrow I take him for genetic testing.

Anyone have a similar story? Advice?

bdd9623 · May 21, 2009

This is my first time on the website chat rooms. I have an 8 yr old son who has dropped from 25% in weight to the 3%. He has had pneumonia/bronchitis 4 times in past year. His lungs are enlarged (by x-ray). He has polyps in his nose. Fought low grade fevers for 3 months. I had to push, but it looks like he will be positive for CF. He had the sweat test at CHOP and it came out high borderline, 56. Tomorrow I take him for genetic testing.

Anyone have a similar story? Advice?

bdd9623 · May 21, 2009

This is my first time on the website chat rooms. I have an 8 yr old son who has dropped from 25% in weight to the 3%. He has had pneumonia/bronchitis 4 times in past year. His lungs are enlarged (by x-ray). He has polyps in his nose. Fought low grade fevers for 3 months. I had to push, but it looks like he will be positive for CF. He had the sweat test at CHOP and it came out high borderline, 56. Tomorrow I take him for genetic testing.

Anyone have a similar story? Advice?

bdd9623 · May 21, 2009

This is my first time on the website chat rooms. I have an 8 yr old son who has dropped from 25% in weight to the 3%. He has had pneumonia/bronchitis 4 times in past year. His lungs are enlarged (by x-ray). He has polyps in his nose. Fought low grade fevers for 3 months. I had to push, but it looks like he will be positive for CF. He had the sweat test at CHOP and it came out high borderline, 56. Tomorrow I take him for genetic testing.
 
 Anyone have a similar story? Advice?

Mommafirst · May 22, 2009

Welcome Brenda. I'm so sorry that you are dealing with this. Diagnosis is just downright hard. It does get better though, especially since you've lived with this for 8 years and had no name for it or any strategies for fighting it.

My daughter was diagnosed at 5 months of age, so I suppose our stories are a bit different. She did score a 53 on her sweat test and it took the Ambry Amplified test to find her a diagnosis.

Welcome and hang inthere. It gets easier over time.

Mommafirst · May 22, 2009

Welcome Brenda. I'm so sorry that you are dealing with this. Diagnosis is just downright hard. It does get better though, especially since you've lived with this for 8 years and had no name for it or any strategies for fighting it.

My daughter was diagnosed at 5 months of age, so I suppose our stories are a bit different. She did score a 53 on her sweat test and it took the Ambry Amplified test to find her a diagnosis.

Welcome and hang inthere. It gets easier over time.

Mommafirst · May 22, 2009

Welcome Brenda. I'm so sorry that you are dealing with this. Diagnosis is just downright hard. It does get better though, especially since you've lived with this for 8 years and had no name for it or any strategies for fighting it.

My daughter was diagnosed at 5 months of age, so I suppose our stories are a bit different. She did score a 53 on her sweat test and it took the Ambry Amplified test to find her a diagnosis.

Welcome and hang inthere. It gets easier over time.

Mommafirst · May 22, 2009

Welcome Brenda. I'm so sorry that you are dealing with this. Diagnosis is just downright hard. It does get better though, especially since you've lived with this for 8 years and had no name for it or any strategies for fighting it.

My daughter was diagnosed at 5 months of age, so I suppose our stories are a bit different. She did score a 53 on her sweat test and it took the Ambry Amplified test to find her a diagnosis.

Welcome and hang inthere. It gets easier over time.

Mommafirst · May 22, 2009

Welcome Brenda. I'm so sorry that you are dealing with this. Diagnosis is just downright hard. It does get better though, especially since you've lived with this for 8 years and had no name for it or any strategies for fighting it.
 
 My daughter was diagnosed at 5 months of age, so I suppose our stories are a bit different. She did score a 53 on her sweat test and it took the Ambry Amplified test to find her a diagnosis.
 
 Welcome and hang inthere. It gets easier over time.

MaksNana · Jun 3, 2009

<img src="i/expressions/hugging.gif" border="0">Dear Brenda,,, there's no easy way with dealing with diagnoising CF...I'v said before it can be cut and dry for some cases,, and others it can take more time....Just make sure if you can, go through Ambry Genetics if you have to, because they test for alot more genes .. But ,also, do you know if you or your partner is a carrier of a CF gene???

Please keep us in touch, this is a great website,, and alot of support if you need it

MaksNana · Jun 3, 2009

<img src="i/expressions/hugging.gif" border="0">Dear Brenda,,, there's no easy way with dealing with diagnoising CF...I'v said before it can be cut and dry for some cases,, and others it can take more time....Just make sure if you can, go through Ambry Genetics if you have to, because they test for alot more genes .. But ,also, do you know if you or your partner is a carrier of a CF gene???

Please keep us in touch, this is a great website,, and alot of support if you need it

MaksNana · Jun 3, 2009

<img src="i/expressions/hugging.gif" border="0">Dear Brenda,,, there's no easy way with dealing with diagnoising CF...I'v said before it can be cut and dry for some cases,, and others it can take more time....Just make sure if you can, go through Ambry Genetics if you have to, because they test for alot more genes .. But ,also, do you know if you or your partner is a carrier of a CF gene???

Please keep us in touch, this is a great website,, and alot of support if you need it

MaksNana · Jun 3, 2009

<img src="i/expressions/hugging.gif" border="0">Dear Brenda,,, there's no easy way with dealing with diagnoising CF...I'v said before it can be cut and dry for some cases,, and others it can take more time....Just make sure if you can, go through Ambry Genetics if you have to, because they test for alot more genes .. But ,also, do you know if you or your partner is a carrier of a CF gene???

Please keep us in touch, this is a great website,, and alot of support if you need it

MaksNana · Jun 3, 2009

<img src="i/expressions/hugging.gif" border="0">Dear Brenda,,, there's no easy way with dealing with diagnoising CF...I'v said before it can be cut and dry for some cases,, and others it can take more time....Just make sure if you can, go through Ambry Genetics if you have to, because they test for alot more genes .. But ,also, do you know if you or your partner is a carrier of a CF gene???
 
 Please keep us in touch, this is a great website,, and alot of support if you need it

Alyssa · Jun 6, 2009