What are the chances?

[ctalbott0609]

Hello everyone! This is probably the most unformal way to introduce myself, but my name is Chelsea, and I'm a 21 year old mom of two. Matthew who's 3, without CF, and Paige, who was born June 3, and we just got the phone call this morning that it is very probable that she has CF.

Her PKU came back elevated for CF. The Ped. told me that they look for nothing higher then 100 and Paige was 139. She sent us for a repeat, and all they told me was that the number was even higher this time.

Paige was 7lbs 14oz when she was born, and at her 2 wk check up, she was 8lbs 3oz. She looked perfectly normal, and her lungs were fine. She was perfect, except for the PKU abnormality.

We went to WIC yesterday, and she dropped back down to 7lbs 15oz. In the last week she's gone from eating 4 oz of formula all the way up to 6 oz, and she'll still be hungry....all this on top of breast feeding too.

Her stools are very very runny, and she's constantly overflowing her diapers. None of it sticks to her like a newborn stool usually does, and it is in fact, very oily/greasy.

She's also maybe awake a total of 2 hours a day.

Upon telling the Ped. this, she said that those symptoms are what they look for when diagnosing CF.

We have an appointment scheduled for Wednesday, July 1st and Children's Mercy Hospital in Kansas City, Missouri; and the Ped. told me that it's for a sweat test.

I'm just lost. Neither myself, nor my husband have this, and no one on either side of our family does, that we know of. I am big into geneology, and have traced my family back to the 1700's, and unless it was misdiagnosed, no one has ever had it. His mom is adopted though, and has never located her birth parents.

As if this wasn't enough, my son was in the hospital 3 weeks ago for an overdose, and we almost lost him. (He was at the sitters and she wasn't watching him, and he got into some Ambien) We're also suffering very badly financially, and my husband can't afford to take any more time off from work.

I just really need some support, and a big hug....Where do I go from here, and what are the chances that she really does have this?

 

[ctalbott0609]

Hello everyone! This is probably the most unformal way to introduce myself, but my name is Chelsea, and I'm a 21 year old mom of two. Matthew who's 3, without CF, and Paige, who was born June 3, and we just got the phone call this morning that it is very probable that she has CF.

Her PKU came back elevated for CF. The Ped. told me that they look for nothing higher then 100 and Paige was 139. She sent us for a repeat, and all they told me was that the number was even higher this time.

Paige was 7lbs 14oz when she was born, and at her 2 wk check up, she was 8lbs 3oz. She looked perfectly normal, and her lungs were fine. She was perfect, except for the PKU abnormality.

We went to WIC yesterday, and she dropped back down to 7lbs 15oz. In the last week she's gone from eating 4 oz of formula all the way up to 6 oz, and she'll still be hungry....all this on top of breast feeding too.

Her stools are very very runny, and she's constantly overflowing her diapers. None of it sticks to her like a newborn stool usually does, and it is in fact, very oily/greasy.

She's also maybe awake a total of 2 hours a day.

Upon telling the Ped. this, she said that those symptoms are what they look for when diagnosing CF.

We have an appointment scheduled for Wednesday, July 1st and Children's Mercy Hospital in Kansas City, Missouri; and the Ped. told me that it's for a sweat test.

I'm just lost. Neither myself, nor my husband have this, and no one on either side of our family does, that we know of. I am big into geneology, and have traced my family back to the 1700's, and unless it was misdiagnosed, no one has ever had it. His mom is adopted though, and has never located her birth parents.

As if this wasn't enough, my son was in the hospital 3 weeks ago for an overdose, and we almost lost him. (He was at the sitters and she wasn't watching him, and he got into some Ambien) We're also suffering very badly financially, and my husband can't afford to take any more time off from work.

I just really need some support, and a big hug....Where do I go from here, and what are the chances that she really does have this?

 

[ctalbott0609]

Hello everyone! This is probably the most unformal way to introduce myself, but my name is Chelsea, and I'm a 21 year old mom of two. Matthew who's 3, without CF, and Paige, who was born June 3, and we just got the phone call this morning that it is very probable that she has CF.

Her PKU came back elevated for CF. The Ped. told me that they look for nothing higher then 100 and Paige was 139. She sent us for a repeat, and all they told me was that the number was even higher this time.

Paige was 7lbs 14oz when she was born, and at her 2 wk check up, she was 8lbs 3oz. She looked perfectly normal, and her lungs were fine. She was perfect, except for the PKU abnormality.

We went to WIC yesterday, and she dropped back down to 7lbs 15oz. In the last week she's gone from eating 4 oz of formula all the way up to 6 oz, and she'll still be hungry....all this on top of breast feeding too.

Her stools are very very runny, and she's constantly overflowing her diapers. None of it sticks to her like a newborn stool usually does, and it is in fact, very oily/greasy.

She's also maybe awake a total of 2 hours a day.

Upon telling the Ped. this, she said that those symptoms are what they look for when diagnosing CF.

We have an appointment scheduled for Wednesday, July 1st and Children's Mercy Hospital in Kansas City, Missouri; and the Ped. told me that it's for a sweat test.

I'm just lost. Neither myself, nor my husband have this, and no one on either side of our family does, that we know of. I am big into geneology, and have traced my family back to the 1700's, and unless it was misdiagnosed, no one has ever had it. His mom is adopted though, and has never located her birth parents.

As if this wasn't enough, my son was in the hospital 3 weeks ago for an overdose, and we almost lost him. (He was at the sitters and she wasn't watching him, and he got into some Ambien) We're also suffering very badly financially, and my husband can't afford to take any more time off from work.

I just really need some support, and a big hug....Where do I go from here, and what are the chances that she really does have this?

 

[ctalbott0609]

Hello everyone! This is probably the most unformal way to introduce myself, but my name is Chelsea, and I'm a 21 year old mom of two. Matthew who's 3, without CF, and Paige, who was born June 3, and we just got the phone call this morning that it is very probable that she has CF.

Her PKU came back elevated for CF. The Ped. told me that they look for nothing higher then 100 and Paige was 139. She sent us for a repeat, and all they told me was that the number was even higher this time.

Paige was 7lbs 14oz when she was born, and at her 2 wk check up, she was 8lbs 3oz. She looked perfectly normal, and her lungs were fine. She was perfect, except for the PKU abnormality.

We went to WIC yesterday, and she dropped back down to 7lbs 15oz. In the last week she's gone from eating 4 oz of formula all the way up to 6 oz, and she'll still be hungry....all this on top of breast feeding too.

Her stools are very very runny, and she's constantly overflowing her diapers. None of it sticks to her like a newborn stool usually does, and it is in fact, very oily/greasy.

She's also maybe awake a total of 2 hours a day.

Upon telling the Ped. this, she said that those symptoms are what they look for when diagnosing CF.

We have an appointment scheduled for Wednesday, July 1st and Children's Mercy Hospital in Kansas City, Missouri; and the Ped. told me that it's for a sweat test.

I'm just lost. Neither myself, nor my husband have this, and no one on either side of our family does, that we know of. I am big into geneology, and have traced my family back to the 1700's, and unless it was misdiagnosed, no one has ever had it. His mom is adopted though, and has never located her birth parents.

As if this wasn't enough, my son was in the hospital 3 weeks ago for an overdose, and we almost lost him. (He was at the sitters and she wasn't watching him, and he got into some Ambien) We're also suffering very badly financially, and my husband can't afford to take any more time off from work.

I just really need some support, and a big hug....Where do I go from here, and what are the chances that she really does have this?

 

[ctalbott0609]

Hello everyone! This is probably the most unformal way to introduce myself, but my name is Chelsea, and I'm a 21 year old mom of two. Matthew who's 3, without CF, and Paige, who was born June 3, and we just got the phone call this morning that it is very probable that she has CF.
<br />
<br />Her PKU came back elevated for CF. The Ped. told me that they look for nothing higher then 100 and Paige was 139. She sent us for a repeat, and all they told me was that the number was even higher this time.
<br />
<br />Paige was 7lbs 14oz when she was born, and at her 2 wk check up, she was 8lbs 3oz. She looked perfectly normal, and her lungs were fine. She was perfect, except for the PKU abnormality.
<br />
<br />We went to WIC yesterday, and she dropped back down to 7lbs 15oz. In the last week she's gone from eating 4 oz of formula all the way up to 6 oz, and she'll still be hungry....all this on top of breast feeding too.
<br />
<br />Her stools are very very runny, and she's constantly overflowing her diapers. None of it sticks to her like a newborn stool usually does, and it is in fact, very oily/greasy.
<br />
<br />She's also maybe awake a total of 2 hours a day.
<br />
<br />Upon telling the Ped. this, she said that those symptoms are what they look for when diagnosing CF.
<br />
<br />We have an appointment scheduled for Wednesday, July 1st and Children's Mercy Hospital in Kansas City, Missouri; and the Ped. told me that it's for a sweat test.
<br />
<br />I'm just lost. Neither myself, nor my husband have this, and no one on either side of our family does, that we know of. I am big into geneology, and have traced my family back to the 1700's, and unless it was misdiagnosed, no one has ever had it. His mom is adopted though, and has never located her birth parents.
<br />
<br />As if this wasn't enough, my son was in the hospital 3 weeks ago for an overdose, and we almost lost him. (He was at the sitters and she wasn't watching him, and he got into some Ambien) We're also suffering very badly financially, and my husband can't afford to take any more time off from work.
<br />
<br />I just really need some support, and a big hug....Where do I go from here, and what are the chances that she really does have this?

 

[Jeana]

First of all, hugs to you. This is a hard situation. I would tell you not to worry until they do the sweat test, but I know you'll worry anyway.

I'll be praying for you, but whatever happens know that there are so many supportive people on the site that are here to encourage you and to answer questions.

 

[Jeana]

First of all, hugs to you. This is a hard situation. I would tell you not to worry until they do the sweat test, but I know you'll worry anyway.

I'll be praying for you, but whatever happens know that there are so many supportive people on the site that are here to encourage you and to answer questions.

 

[Jeana]

First of all, hugs to you. This is a hard situation. I would tell you not to worry until they do the sweat test, but I know you'll worry anyway.

I'll be praying for you, but whatever happens know that there are so many supportive people on the site that are here to encourage you and to answer questions.

 

[Jeana]

First of all, hugs to you. This is a hard situation. I would tell you not to worry until they do the sweat test, but I know you'll worry anyway.

I'll be praying for you, but whatever happens know that there are so many supportive people on the site that are here to encourage you and to answer questions.

 

[Jeana]

First of all, hugs to you. This is a hard situation. I would tell you not to worry until they do the sweat test, but I know you'll worry anyway.
<br />
<br />I'll be praying for you, but whatever happens know that there are so many supportive people on the site that are here to encourage you and to answer questions.

 

[Dea]

It's good that you found this website Chelsea. It is a very good place to get information as well as support from those with CF and parents of CF children.
Unfortunately, the genetics of CF are complicated. I know on this site you will hear a majority say that they were the first in their family history with CF....myself included and I have HUGE families on both my mom and my dad's sides of the family.
I do want to tell you that I have nothing but good to say about Dr. Black at Children's Mercy. He was my doctor for about a year when I lived in St. Joseph,MO. I know there is a program too in Missouri for children with disabilites (if she does have CF) to help with medical expenses. There should be a social worker at the hospital for you to talk to...that's why they are there..dont be afraid to ask for help.
As far as your daughter having CF...you can only wait for the outcome of the test. It is good that she is not having any major complications right now...and if she is diagnosed-it is better to know now so preventative measures can be taken. And as I said before, this is a great place for support...everyone understands what you are going through and will try to help you get through it. Take one day at a time.
Hugs and prayers to you, your daughter and your family!
Dea

 

[Dea]

It's good that you found this website Chelsea. It is a very good place to get information as well as support from those with CF and parents of CF children.
Unfortunately, the genetics of CF are complicated. I know on this site you will hear a majority say that they were the first in their family history with CF....myself included and I have HUGE families on both my mom and my dad's sides of the family.
I do want to tell you that I have nothing but good to say about Dr. Black at Children's Mercy. He was my doctor for about a year when I lived in St. Joseph,MO. I know there is a program too in Missouri for children with disabilites (if she does have CF) to help with medical expenses. There should be a social worker at the hospital for you to talk to...that's why they are there..dont be afraid to ask for help.
As far as your daughter having CF...you can only wait for the outcome of the test. It is good that she is not having any major complications right now...and if she is diagnosed-it is better to know now so preventative measures can be taken. And as I said before, this is a great place for support...everyone understands what you are going through and will try to help you get through it. Take one day at a time.
Hugs and prayers to you, your daughter and your family!
Dea

 

[Dea]

It's good that you found this website Chelsea. It is a very good place to get information as well as support from those with CF and parents of CF children.
Unfortunately, the genetics of CF are complicated. I know on this site you will hear a majority say that they were the first in their family history with CF....myself included and I have HUGE families on both my mom and my dad's sides of the family.
I do want to tell you that I have nothing but good to say about Dr. Black at Children's Mercy. He was my doctor for about a year when I lived in St. Joseph,MO. I know there is a program too in Missouri for children with disabilites (if she does have CF) to help with medical expenses. There should be a social worker at the hospital for you to talk to...that's why they are there..dont be afraid to ask for help.
As far as your daughter having CF...you can only wait for the outcome of the test. It is good that she is not having any major complications right now...and if she is diagnosed-it is better to know now so preventative measures can be taken. And as I said before, this is a great place for support...everyone understands what you are going through and will try to help you get through it. Take one day at a time.
Hugs and prayers to you, your daughter and your family!
Dea

 

[Dea]

It's good that you found this website Chelsea. It is a very good place to get information as well as support from those with CF and parents of CF children.
Unfortunately, the genetics of CF are complicated. I know on this site you will hear a majority say that they were the first in their family history with CF....myself included and I have HUGE families on both my mom and my dad's sides of the family.
I do want to tell you that I have nothing but good to say about Dr. Black at Children's Mercy. He was my doctor for about a year when I lived in St. Joseph,MO. I know there is a program too in Missouri for children with disabilites (if she does have CF) to help with medical expenses. There should be a social worker at the hospital for you to talk to...that's why they are there..dont be afraid to ask for help.
As far as your daughter having CF...you can only wait for the outcome of the test. It is good that she is not having any major complications right now...and if she is diagnosed-it is better to know now so preventative measures can be taken. And as I said before, this is a great place for support...everyone understands what you are going through and will try to help you get through it. Take one day at a time.
Hugs and prayers to you, your daughter and your family!
Dea

 

[Dea]

It's good that you found this website Chelsea. It is a very good place to get information as well as support from those with CF and parents of CF children.
<br />Unfortunately, the genetics of CF are complicated. I know on this site you will hear a majority say that they were the first in their family history with CF....myself included and I have HUGE families on both my mom and my dad's sides of the family.
<br />I do want to tell you that I have nothing but good to say about Dr. Black at Children's Mercy. He was my doctor for about a year when I lived in St. Joseph,MO. I know there is a program too in Missouri for children with disabilites (if she does have CF) to help with medical expenses. There should be a social worker at the hospital for you to talk to...that's why they are there..dont be afraid to ask for help.
<br />As far as your daughter having CF...you can only wait for the outcome of the test. It is good that she is not having any major complications right now...and if she is diagnosed-it is better to know now so preventative measures can be taken. And as I said before, this is a great place for support...everyone understands what you are going through and will try to help you get through it. Take one day at a time.
<br />Hugs and prayers to you, your daughter and your family!
<br />Dea

 

[RebekahsMom]

Hi,
My daughter loves Doc Black! Two visits ago she had to take a bunch of sticky memo sheets that she had drawn pictures on for him. If you need to talk to someone on the phone or in person, e-mail me your phone number and I will call you. What county are you in? If it's Ray county, I will give you the name of a wonderful lady that helped me tremendously after Bek was diagnosed.

When I applied for Medical Assistance for a Disabled Child, we were originally turned down. About a month and a half later, she called me to come sign paperwork because she had gotten her approved! She didn't just let it drop. She kept working at it. She also got it so that it covered her from the July before she was diagnosed so all her doctors appointments and the trip to the emergency room were covered. We all know your fears. We've all been there.

It's been several years, but I still clearly remember Bek's poos! Even the 'guaranteed to not leak' diapers didn't hold her messes! They were so bad they made her babysitter gag.

My e-mail address is stewart_rl@hotmail.com if you want to talk. Who knows, we may have our kids at Doc Black's at the same time for future appointments. It would be nice to meet you, and to help you through this rough time you are going through. Sometimes it helps to hear the voice of someone who has been where you are now. And be glad Missouri is a state that now tests for CF during newborn screening. When I had Bek in 2003, they didn't. We went until 10/4/2005 without knowing what was going on with her.

 

[RebekahsMom]

Hi,
My daughter loves Doc Black! Two visits ago she had to take a bunch of sticky memo sheets that she had drawn pictures on for him. If you need to talk to someone on the phone or in person, e-mail me your phone number and I will call you. What county are you in? If it's Ray county, I will give you the name of a wonderful lady that helped me tremendously after Bek was diagnosed.

When I applied for Medical Assistance for a Disabled Child, we were originally turned down. About a month and a half later, she called me to come sign paperwork because she had gotten her approved! She didn't just let it drop. She kept working at it. She also got it so that it covered her from the July before she was diagnosed so all her doctors appointments and the trip to the emergency room were covered. We all know your fears. We've all been there.

It's been several years, but I still clearly remember Bek's poos! Even the 'guaranteed to not leak' diapers didn't hold her messes! They were so bad they made her babysitter gag.

My e-mail address is stewart_rl@hotmail.com if you want to talk. Who knows, we may have our kids at Doc Black's at the same time for future appointments. It would be nice to meet you, and to help you through this rough time you are going through. Sometimes it helps to hear the voice of someone who has been where you are now. And be glad Missouri is a state that now tests for CF during newborn screening. When I had Bek in 2003, they didn't. We went until 10/4/2005 without knowing what was going on with her.

 

[RebekahsMom]

Hi,
My daughter loves Doc Black! Two visits ago she had to take a bunch of sticky memo sheets that she had drawn pictures on for him. If you need to talk to someone on the phone or in person, e-mail me your phone number and I will call you. What county are you in? If it's Ray county, I will give you the name of a wonderful lady that helped me tremendously after Bek was diagnosed.

When I applied for Medical Assistance for a Disabled Child, we were originally turned down. About a month and a half later, she called me to come sign paperwork because she had gotten her approved! She didn't just let it drop. She kept working at it. She also got it so that it covered her from the July before she was diagnosed so all her doctors appointments and the trip to the emergency room were covered. We all know your fears. We've all been there.

It's been several years, but I still clearly remember Bek's poos! Even the 'guaranteed to not leak' diapers didn't hold her messes! They were so bad they made her babysitter gag.

My e-mail address is stewart_rl@hotmail.com if you want to talk. Who knows, we may have our kids at Doc Black's at the same time for future appointments. It would be nice to meet you, and to help you through this rough time you are going through. Sometimes it helps to hear the voice of someone who has been where you are now. And be glad Missouri is a state that now tests for CF during newborn screening. When I had Bek in 2003, they didn't. We went until 10/4/2005 without knowing what was going on with her.

 

[RebekahsMom]

Hi,
My daughter loves Doc Black! Two visits ago she had to take a bunch of sticky memo sheets that she had drawn pictures on for him. If you need to talk to someone on the phone or in person, e-mail me your phone number and I will call you. What county are you in? If it's Ray county, I will give you the name of a wonderful lady that helped me tremendously after Bek was diagnosed.

When I applied for Medical Assistance for a Disabled Child, we were originally turned down. About a month and a half later, she called me to come sign paperwork because she had gotten her approved! She didn't just let it drop. She kept working at it. She also got it so that it covered her from the July before she was diagnosed so all her doctors appointments and the trip to the emergency room were covered. We all know your fears. We've all been there.

It's been several years, but I still clearly remember Bek's poos! Even the 'guaranteed to not leak' diapers didn't hold her messes! They were so bad they made her babysitter gag.

My e-mail address is stewart_rl@hotmail.com if you want to talk. Who knows, we may have our kids at Doc Black's at the same time for future appointments. It would be nice to meet you, and to help you through this rough time you are going through. Sometimes it helps to hear the voice of someone who has been where you are now. And be glad Missouri is a state that now tests for CF during newborn screening. When I had Bek in 2003, they didn't. We went until 10/4/2005 without knowing what was going on with her.

 

[RebekahsMom]

Hi,
<br />My daughter loves Doc Black! Two visits ago she had to take a bunch of sticky memo sheets that she had drawn pictures on for him. If you need to talk to someone on the phone or in person, e-mail me your phone number and I will call you. What county are you in? If it's Ray county, I will give you the name of a wonderful lady that helped me tremendously after Bek was diagnosed.
<br />
<br />When I applied for Medical Assistance for a Disabled Child, we were originally turned down. About a month and a half later, she called me to come sign paperwork because she had gotten her approved! She didn't just let it drop. She kept working at it. She also got it so that it covered her from the July before she was diagnosed so all her doctors appointments and the trip to the emergency room were covered. We all know your fears. We've all been there.
<br />
<br />It's been several years, but I still clearly remember Bek's poos! Even the 'guaranteed to not leak' diapers didn't hold her messes! They were so bad they made her babysitter gag.
<br />
<br />My e-mail address is stewart_rl@hotmail.com if you want to talk. Who knows, we may have our kids at Doc Black's at the same time for future appointments. It would be nice to meet you, and to help you through this rough time you are going through. Sometimes it helps to hear the voice of someone who has been where you are now. And be glad Missouri is a state that now tests for CF during newborn screening. When I had Bek in 2003, they didn't. We went until 10/4/2005 without knowing what was going on with her.