Newly Diagnosed ?

[Alyssa]

I'm not sure I fall into the category of who you would like to hear from, since both my kids do have genetically confirmed cases, but I wanted to say hello and let you know we are here for you.

My kids sweat tests are 38 and 41 "normal" and just into the borderline area. The one with the score of 38 (my daughter) was misdiagnosed for 8 years because of that score.

If you would like to read more, check out my blog page here.

 

[Alyssa]

I'm not sure I fall into the category of who you would like to hear from, since both my kids do have genetically confirmed cases, but I wanted to say hello and let you know we are here for you.

My kids sweat tests are 38 and 41 "normal" and just into the borderline area. The one with the score of 38 (my daughter) was misdiagnosed for 8 years because of that score.

If you would like to read more, check out my blog page here.

 

[Alyssa]

I'm not sure I fall into the category of who you would like to hear from, since both my kids do have genetically confirmed cases, but I wanted to say hello and let you know we are here for you.

My kids sweat tests are 38 and 41 "normal" and just into the borderline area. The one with the score of 38 (my daughter) was misdiagnosed for 8 years because of that score.

If you would like to read more, check out my blog page here.

 

[Alyssa]

I'm not sure I fall into the category of who you would like to hear from, since both my kids do have genetically confirmed cases, but I wanted to say hello and let you know we are here for you.

My kids sweat tests are 38 and 41 "normal" and just into the borderline area. The one with the score of 38 (my daughter) was misdiagnosed for 8 years because of that score.

If you would like to read more, check out my blog page here.

 

[Alyssa]

I'm not sure I fall into the category of who you would like to hear from, since both my kids do have genetically confirmed cases, but I wanted to say hello and let you know we are here for you.
<br />
<br />My kids sweat tests are 38 and 41 "normal" and just into the borderline area. The one with the score of 38 (my daughter) was misdiagnosed for 8 years because of that score.
<br />
<br />If you would like to read more, check out my blog page here.

 

[clawson5104]

Hi, I'm with you....My son had borderline sweat test.....found only one mutation....with variant....and it's not what you call a "serious" mutation.....but yet...he's in the 10th percentile on weight....and has asthma/allergies.....he does fine thru summer...but HORRIBLE in fall, winter and early spring....when he gets a cold/virus....it's AWFUL....he also deals with constipation alot....but is pancreatic sufficient, moderate to severe reflux.

He started with pulmocort/albuterol treatments.....singulair...and miralax...one multivitamin...2 prevacid daily..... now he is on all that and pulmozyme...and extra vitamin.....

Our docs said...he is not classic....but will be treating him as if he was....because when we back off ....and treat him mildly...like giving him regular doses of antibiotics....it doesn't work....he gets worse so he does 22 days of augmention....instead of 10 days.....etc.....when we do "normal" kid stuff.....it doesn't do any good. Sometimes they're not sure if his problems are ashtma/allergy....or cf actually rearing it's ugly head.

So, what I'm trying to get at.....it's great they're taking care of her REGARDLESS...I've met some that just continue banging their head against the wall while their children continue to get sick till the docs figure it out......as far as understanding "ATYPICAL" well.....
GOOD LUCK WITH THAT......I've yet to figure it out....and I have figured out ...trying to figure it out made me run in continuous circles......frustrating...and not good for my stomach.....
We just take it day by day....thanks for the good days....deal with the bad as they come.

And don't forget....CF....it's all about "preventive measures" even if they don't seem like they need meds/treatments....listen to the docs and follow thru....it may be for nothing....and yet it may save your daughter alot of trouble later.

So HANG IN THERE!......keep us posted....and you're in my prayers......

 

[clawson5104]

Hi, I'm with you....My son had borderline sweat test.....found only one mutation....with variant....and it's not what you call a "serious" mutation.....but yet...he's in the 10th percentile on weight....and has asthma/allergies.....he does fine thru summer...but HORRIBLE in fall, winter and early spring....when he gets a cold/virus....it's AWFUL....he also deals with constipation alot....but is pancreatic sufficient, moderate to severe reflux.

He started with pulmocort/albuterol treatments.....singulair...and miralax...one multivitamin...2 prevacid daily..... now he is on all that and pulmozyme...and extra vitamin.....

Our docs said...he is not classic....but will be treating him as if he was....because when we back off ....and treat him mildly...like giving him regular doses of antibiotics....it doesn't work....he gets worse so he does 22 days of augmention....instead of 10 days.....etc.....when we do "normal" kid stuff.....it doesn't do any good. Sometimes they're not sure if his problems are ashtma/allergy....or cf actually rearing it's ugly head.

So, what I'm trying to get at.....it's great they're taking care of her REGARDLESS...I've met some that just continue banging their head against the wall while their children continue to get sick till the docs figure it out......as far as understanding "ATYPICAL" well.....
GOOD LUCK WITH THAT......I've yet to figure it out....and I have figured out ...trying to figure it out made me run in continuous circles......frustrating...and not good for my stomach.....
We just take it day by day....thanks for the good days....deal with the bad as they come.

And don't forget....CF....it's all about "preventive measures" even if they don't seem like they need meds/treatments....listen to the docs and follow thru....it may be for nothing....and yet it may save your daughter alot of trouble later.

So HANG IN THERE!......keep us posted....and you're in my prayers......

 

[clawson5104]

Hi, I'm with you....My son had borderline sweat test.....found only one mutation....with variant....and it's not what you call a "serious" mutation.....but yet...he's in the 10th percentile on weight....and has asthma/allergies.....he does fine thru summer...but HORRIBLE in fall, winter and early spring....when he gets a cold/virus....it's AWFUL....he also deals with constipation alot....but is pancreatic sufficient, moderate to severe reflux.

He started with pulmocort/albuterol treatments.....singulair...and miralax...one multivitamin...2 prevacid daily..... now he is on all that and pulmozyme...and extra vitamin.....

Our docs said...he is not classic....but will be treating him as if he was....because when we back off ....and treat him mildly...like giving him regular doses of antibiotics....it doesn't work....he gets worse so he does 22 days of augmention....instead of 10 days.....etc.....when we do "normal" kid stuff.....it doesn't do any good. Sometimes they're not sure if his problems are ashtma/allergy....or cf actually rearing it's ugly head.

So, what I'm trying to get at.....it's great they're taking care of her REGARDLESS...I've met some that just continue banging their head against the wall while their children continue to get sick till the docs figure it out......as far as understanding "ATYPICAL" well.....
GOOD LUCK WITH THAT......I've yet to figure it out....and I have figured out ...trying to figure it out made me run in continuous circles......frustrating...and not good for my stomach.....
We just take it day by day....thanks for the good days....deal with the bad as they come.

And don't forget....CF....it's all about "preventive measures" even if they don't seem like they need meds/treatments....listen to the docs and follow thru....it may be for nothing....and yet it may save your daughter alot of trouble later.

So HANG IN THERE!......keep us posted....and you're in my prayers......

 

[clawson5104]

Hi, I'm with you....My son had borderline sweat test.....found only one mutation....with variant....and it's not what you call a "serious" mutation.....but yet...he's in the 10th percentile on weight....and has asthma/allergies.....he does fine thru summer...but HORRIBLE in fall, winter and early spring....when he gets a cold/virus....it's AWFUL....he also deals with constipation alot....but is pancreatic sufficient, moderate to severe reflux.

He started with pulmocort/albuterol treatments.....singulair...and miralax...one multivitamin...2 prevacid daily..... now he is on all that and pulmozyme...and extra vitamin.....

Our docs said...he is not classic....but will be treating him as if he was....because when we back off ....and treat him mildly...like giving him regular doses of antibiotics....it doesn't work....he gets worse so he does 22 days of augmention....instead of 10 days.....etc.....when we do "normal" kid stuff.....it doesn't do any good. Sometimes they're not sure if his problems are ashtma/allergy....or cf actually rearing it's ugly head.

So, what I'm trying to get at.....it's great they're taking care of her REGARDLESS...I've met some that just continue banging their head against the wall while their children continue to get sick till the docs figure it out......as far as understanding "ATYPICAL" well.....
GOOD LUCK WITH THAT......I've yet to figure it out....and I have figured out ...trying to figure it out made me run in continuous circles......frustrating...and not good for my stomach.....
We just take it day by day....thanks for the good days....deal with the bad as they come.

And don't forget....CF....it's all about "preventive measures" even if they don't seem like they need meds/treatments....listen to the docs and follow thru....it may be for nothing....and yet it may save your daughter alot of trouble later.

So HANG IN THERE!......keep us posted....and you're in my prayers......

 

[clawson5104]

Hi, I'm with you....My son had borderline sweat test.....found only one mutation....with variant....and it's not what you call a "serious" mutation.....but yet...he's in the 10th percentile on weight....and has asthma/allergies.....he does fine thru summer...but HORRIBLE in fall, winter and early spring....when he gets a cold/virus....it's AWFUL....he also deals with constipation alot....but is pancreatic sufficient, moderate to severe reflux.
<br />
<br />He started with pulmocort/albuterol treatments.....singulair...and miralax...one multivitamin...2 prevacid daily..... now he is on all that and pulmozyme...and extra vitamin.....
<br />
<br />Our docs said...he is not classic....but will be treating him as if he was....because when we back off ....and treat him mildly...like giving him regular doses of antibiotics....it doesn't work....he gets worse so he does 22 days of augmention....instead of 10 days.....etc.....when we do "normal" kid stuff.....it doesn't do any good. Sometimes they're not sure if his problems are ashtma/allergy....or cf actually rearing it's ugly head.
<br />
<br />So, what I'm trying to get at.....it's great they're taking care of her REGARDLESS...I've met some that just continue banging their head against the wall while their children continue to get sick till the docs figure it out......as far as understanding "ATYPICAL" well.....
<br />GOOD LUCK WITH THAT......I've yet to figure it out....and I have figured out ...trying to figure it out made me run in continuous circles......frustrating...and not good for my stomach.....
<br />We just take it day by day....thanks for the good days....deal with the bad as they come.
<br />
<br />And don't forget....CF....it's all about "preventive measures" even if they don't seem like they need meds/treatments....listen to the docs and follow thru....it may be for nothing....and yet it may save your daughter alot of trouble later.
<br />
<br />So HANG IN THERE!......keep us posted....and you're in my prayers......

 

[Koleen]

Thank you for everyones response and feed back. I'm trying to have a differant outlook and to calm myself down with things. To enjoy life more and stop racking my brain and driving myself crazy trying to figure out more answers on my own. We have been going every three months for are check ups. He told me to stop her breathing treatments until winter or when needed. Her lungs great ( and I hope with God and my dad looking from above they will watch over her).
She is still on the small side 35th percent tile, I call her legs. She is all legs. I have read a lot preventation and making changes in the home front to improve things. I have made some changes with things.
This site is wonderful and all of you are wonderful people!!!! Hugs to all of you!!!!!!!!!!!!!!!!!!!!!!!!!

 

[Koleen]

Thank you for everyones response and feed back. I'm trying to have a differant outlook and to calm myself down with things. To enjoy life more and stop racking my brain and driving myself crazy trying to figure out more answers on my own. We have been going every three months for are check ups. He told me to stop her breathing treatments until winter or when needed. Her lungs great ( and I hope with God and my dad looking from above they will watch over her).
She is still on the small side 35th percent tile, I call her legs. She is all legs. I have read a lot preventation and making changes in the home front to improve things. I have made some changes with things.
This site is wonderful and all of you are wonderful people!!!! Hugs to all of you!!!!!!!!!!!!!!!!!!!!!!!!!

 

[Koleen]

Thank you for everyones response and feed back. I'm trying to have a differant outlook and to calm myself down with things. To enjoy life more and stop racking my brain and driving myself crazy trying to figure out more answers on my own. We have been going every three months for are check ups. He told me to stop her breathing treatments until winter or when needed. Her lungs great ( and I hope with God and my dad looking from above they will watch over her).
She is still on the small side 35th percent tile, I call her legs. She is all legs. I have read a lot preventation and making changes in the home front to improve things. I have made some changes with things.
This site is wonderful and all of you are wonderful people!!!! Hugs to all of you!!!!!!!!!!!!!!!!!!!!!!!!!

 

[Koleen]

Thank you for everyones response and feed back. I'm trying to have a differant outlook and to calm myself down with things. To enjoy life more and stop racking my brain and driving myself crazy trying to figure out more answers on my own. We have been going every three months for are check ups. He told me to stop her breathing treatments until winter or when needed. Her lungs great ( and I hope with God and my dad looking from above they will watch over her).
She is still on the small side 35th percent tile, I call her legs. She is all legs. I have read a lot preventation and making changes in the home front to improve things. I have made some changes with things.
This site is wonderful and all of you are wonderful people!!!! Hugs to all of you!!!!!!!!!!!!!!!!!!!!!!!!!

 

[Koleen]

Thank you for everyones response and feed back. I'm trying to have a differant outlook and to calm myself down with things. To enjoy life more and stop racking my brain and driving myself crazy trying to figure out more answers on my own. We have been going every three months for are check ups. He told me to stop her breathing treatments until winter or when needed. Her lungs great ( and I hope with God and my dad looking from above they will watch over her).
<br />She is still on the small side 35th percent tile, I call her legs. She is all legs. I have read a lot preventation and making changes in the home front to improve things. I have made some changes with things.
<br />This site is wonderful and all of you are wonderful people!!!! Hugs to all of you!!!!!!!!!!!!!!!!!!!!!!!!!

 

[clawson5104]

TONS OF ::::::HUGS:::::::: for you too!!! I love this site too....I have learned and am still learning sooooooo much here....it's such a relief.....ther aren't any cfers locally.....that I know of....and just to have somewhere to go with ANY question.....wow.....I am closer to this site...than some parts of my family....crazy....I know....

 

[clawson5104]

TONS OF ::::::HUGS:::::::: for you too!!! I love this site too....I have learned and am still learning sooooooo much here....it's such a relief.....ther aren't any cfers locally.....that I know of....and just to have somewhere to go with ANY question.....wow.....I am closer to this site...than some parts of my family....crazy....I know....

 

[clawson5104]

TONS OF ::::::HUGS:::::::: for you too!!! I love this site too....I have learned and am still learning sooooooo much here....it's such a relief.....ther aren't any cfers locally.....that I know of....and just to have somewhere to go with ANY question.....wow.....I am closer to this site...than some parts of my family....crazy....I know....

 

[clawson5104]

TONS OF ::::::HUGS:::::::: for you too!!! I love this site too....I have learned and am still learning sooooooo much here....it's such a relief.....ther aren't any cfers locally.....that I know of....and just to have somewhere to go with ANY question.....wow.....I am closer to this site...than some parts of my family....crazy....I know....

 

[clawson5104]

TONS OF ::::::HUGS:::::::: for you too!!! I love this site too....I have learned and am still learning sooooooo much here....it's such a relief.....ther aren't any cfers locally.....that I know of....and just to have somewhere to go with ANY question.....wow.....I am closer to this site...than some parts of my family....crazy....I know....