Newly Diagnosed (2 month old son)

M

mom2my3kids

New member
Hi everyone,

Where to begin...my son Xander is 9 weeks old. His IRT level flagged at his newborn screen with a 151. We went for his sweat testing and he scored a 30 which is considered borderline so we proceeded to bloodwork which then showed Delta F508 in addition to a T5 variant. My husband and I have to go to our nearest CF center (2 hours from home) on December 1st. To be quite honest I do not know what to think! He shows only a constant sinus problem (like drainage) since birth but is gaining weight and no other symptoms. There is also no one in the family (that we know of) that has this at all...what will happen next or what should be proactive about asking to be done? Thanks for the advice!
 
M

mom2my3kids

New member
Hi everyone,

Where to begin...my son Xander is 9 weeks old. His IRT level flagged at his newborn screen with a 151. We went for his sweat testing and he scored a 30 which is considered borderline so we proceeded to bloodwork which then showed Delta F508 in addition to a T5 variant. My husband and I have to go to our nearest CF center (2 hours from home) on December 1st. To be quite honest I do not know what to think! He shows only a constant sinus problem (like drainage) since birth but is gaining weight and no other symptoms. There is also no one in the family (that we know of) that has this at all...what will happen next or what should be proactive about asking to be done? Thanks for the advice!
 
M

mom2my3kids

New member
Hi everyone,

Where to begin...my son Xander is 9 weeks old. His IRT level flagged at his newborn screen with a 151. We went for his sweat testing and he scored a 30 which is considered borderline so we proceeded to bloodwork which then showed Delta F508 in addition to a T5 variant. My husband and I have to go to our nearest CF center (2 hours from home) on December 1st. To be quite honest I do not know what to think! He shows only a constant sinus problem (like drainage) since birth but is gaining weight and no other symptoms. There is also no one in the family (that we know of) that has this at all...what will happen next or what should be proactive about asking to be done? Thanks for the advice!
 
M

mom2my3kids

New member
Hi everyone,

Where to begin...my son Xander is 9 weeks old. His IRT level flagged at his newborn screen with a 151. We went for his sweat testing and he scored a 30 which is considered borderline so we proceeded to bloodwork which then showed Delta F508 in addition to a T5 variant. My husband and I have to go to our nearest CF center (2 hours from home) on December 1st. To be quite honest I do not know what to think! He shows only a constant sinus problem (like drainage) since birth but is gaining weight and no other symptoms. There is also no one in the family (that we know of) that has this at all...what will happen next or what should be proactive about asking to be done? Thanks for the advice!
 
M

mom2my3kids

New member
Hi everyone,
<br />
<br />Where to begin...my son Xander is 9 weeks old. His IRT level flagged at his newborn screen with a 151. We went for his sweat testing and he scored a 30 which is considered borderline so we proceeded to bloodwork which then showed Delta F508 in addition to a T5 variant. My husband and I have to go to our nearest CF center (2 hours from home) on December 1st. To be quite honest I do not know what to think! He shows only a constant sinus problem (like drainage) since birth but is gaining weight and no other symptoms. There is also no one in the family (that we know of) that has this at all...what will happen next or what should be proactive about asking to be done? Thanks for the advice!
 
T

tammykrumrey

Guest
Hi Jana. I am sorry to hear about your little one. I know that it is a shock when you first find out about the dx of CF, but it is so important that CF is caught early so treatments can begin.

I am not sure what treatments the clinic will have your little guy start. My girls are 9 and 10, and I think things have changed since they were dx as to the way they start them. Maybe someone who has a newborn can help you out<img src="i/expressions/face-icon-small-smile.gif" border="0">

Welcome, you have found a great source of support here!
 
T

tammykrumrey

Guest
Hi Jana. I am sorry to hear about your little one. I know that it is a shock when you first find out about the dx of CF, but it is so important that CF is caught early so treatments can begin.

I am not sure what treatments the clinic will have your little guy start. My girls are 9 and 10, and I think things have changed since they were dx as to the way they start them. Maybe someone who has a newborn can help you out<img src="i/expressions/face-icon-small-smile.gif" border="0">

Welcome, you have found a great source of support here!
 
T

tammykrumrey

Guest
Hi Jana. I am sorry to hear about your little one. I know that it is a shock when you first find out about the dx of CF, but it is so important that CF is caught early so treatments can begin.

I am not sure what treatments the clinic will have your little guy start. My girls are 9 and 10, and I think things have changed since they were dx as to the way they start them. Maybe someone who has a newborn can help you out<img src="i/expressions/face-icon-small-smile.gif" border="0">

Welcome, you have found a great source of support here!
 
T

tammykrumrey

Guest
Hi Jana. I am sorry to hear about your little one. I know that it is a shock when you first find out about the dx of CF, but it is so important that CF is caught early so treatments can begin.

I am not sure what treatments the clinic will have your little guy start. My girls are 9 and 10, and I think things have changed since they were dx as to the way they start them. Maybe someone who has a newborn can help you out<img src="i/expressions/face-icon-small-smile.gif" border="0">

Welcome, you have found a great source of support here!
 
T

tammykrumrey

Guest
Hi Jana. I am sorry to hear about your little one. I know that it is a shock when you first find out about the dx of CF, but it is so important that CF is caught early so treatments can begin.
<br />
<br />I am not sure what treatments the clinic will have your little guy start. My girls are 9 and 10, and I think things have changed since they were dx as to the way they start them. Maybe someone who has a newborn can help you out<img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Welcome, you have found a great source of support here!
 
G

grassisgreener

New member
Hi Jana, Congrats on your newest little guy! I am sorry he has CF but as you may be finding out, there are some really great treatments and meds for people with CF these days. My daughter with CF is 5 years old (and doing great!) but wasn't diagnosed until she was 12 months old so I am not very experienced with new babies and CF. Your clinic appointment is likely to be a very long one, so if possible you might want to come with just your husband and Xander so you can concentrate on all of the info you will be given. I think our first couple of appointments lasted a few hours each bc we met with the entire team (pulmonologist, dietician, respiratory therapist, social worker, and nurses). They may do a throat culture to check for bacteria, a blood draw for nutrition, and/or an x-ray on his lungs. Once things are established with your family and your clinic the appointments will most likely be much shorter and you may only meet with the entire team once a year (we call those "birthday visits").

Hope this helps & I hope your clinic appointment goes well!
 
G

grassisgreener

New member
Hi Jana, Congrats on your newest little guy! I am sorry he has CF but as you may be finding out, there are some really great treatments and meds for people with CF these days. My daughter with CF is 5 years old (and doing great!) but wasn't diagnosed until she was 12 months old so I am not very experienced with new babies and CF. Your clinic appointment is likely to be a very long one, so if possible you might want to come with just your husband and Xander so you can concentrate on all of the info you will be given. I think our first couple of appointments lasted a few hours each bc we met with the entire team (pulmonologist, dietician, respiratory therapist, social worker, and nurses). They may do a throat culture to check for bacteria, a blood draw for nutrition, and/or an x-ray on his lungs. Once things are established with your family and your clinic the appointments will most likely be much shorter and you may only meet with the entire team once a year (we call those "birthday visits").

Hope this helps & I hope your clinic appointment goes well!
 
G

grassisgreener

New member
Hi Jana, Congrats on your newest little guy! I am sorry he has CF but as you may be finding out, there are some really great treatments and meds for people with CF these days. My daughter with CF is 5 years old (and doing great!) but wasn't diagnosed until she was 12 months old so I am not very experienced with new babies and CF. Your clinic appointment is likely to be a very long one, so if possible you might want to come with just your husband and Xander so you can concentrate on all of the info you will be given. I think our first couple of appointments lasted a few hours each bc we met with the entire team (pulmonologist, dietician, respiratory therapist, social worker, and nurses). They may do a throat culture to check for bacteria, a blood draw for nutrition, and/or an x-ray on his lungs. Once things are established with your family and your clinic the appointments will most likely be much shorter and you may only meet with the entire team once a year (we call those "birthday visits").

Hope this helps & I hope your clinic appointment goes well!
 
G

grassisgreener

New member
Hi Jana, Congrats on your newest little guy! I am sorry he has CF but as you may be finding out, there are some really great treatments and meds for people with CF these days. My daughter with CF is 5 years old (and doing great!) but wasn't diagnosed until she was 12 months old so I am not very experienced with new babies and CF. Your clinic appointment is likely to be a very long one, so if possible you might want to come with just your husband and Xander so you can concentrate on all of the info you will be given. I think our first couple of appointments lasted a few hours each bc we met with the entire team (pulmonologist, dietician, respiratory therapist, social worker, and nurses). They may do a throat culture to check for bacteria, a blood draw for nutrition, and/or an x-ray on his lungs. Once things are established with your family and your clinic the appointments will most likely be much shorter and you may only meet with the entire team once a year (we call those "birthday visits").

Hope this helps & I hope your clinic appointment goes well!
 
G

grassisgreener

New member
Hi Jana, Congrats on your newest little guy! I am sorry he has CF but as you may be finding out, there are some really great treatments and meds for people with CF these days. My daughter with CF is 5 years old (and doing great!) but wasn't diagnosed until she was 12 months old so I am not very experienced with new babies and CF. Your clinic appointment is likely to be a very long one, so if possible you might want to come with just your husband and Xander so you can concentrate on all of the info you will be given. I think our first couple of appointments lasted a few hours each bc we met with the entire team (pulmonologist, dietician, respiratory therapist, social worker, and nurses). They may do a throat culture to check for bacteria, a blood draw for nutrition, and/or an x-ray on his lungs. Once things are established with your family and your clinic the appointments will most likely be much shorter and you may only meet with the entire team once a year (we call those "birthday visits").
<br />
<br />Hope this helps & I hope your clinic appointment goes well!
 
S

Stacia

Guest
Hi Jana, Just want to let you know that Stacia was DX with the very same thing. She had the 5T Variance, the positive thing about it that they believe that your child will be A-typical. Stacia does have the digestive problems, but not much of the lung problems. She does have the terrible sinus problems but that is it. Like I tell Stacia she is not going to die from a stomach ache. They do treat her like any other CF patient just to make sure that she stays in the best health possible. Things will be ok for you I swear, We went for nine years before Stacia was even diagnosed and now I can see how much better she is now that we are being treated. Hang in there it will get easier. I know it is hard at first, we were like you too noone else in our family has CF so we didn't know much about it. We only knew the horrible things about it, but that is not always the case. I feel like you will be just like us. If you want to talk just message me I will try to help ya. Susan
 
S

Stacia

Guest
Hi Jana, Just want to let you know that Stacia was DX with the very same thing. She had the 5T Variance, the positive thing about it that they believe that your child will be A-typical. Stacia does have the digestive problems, but not much of the lung problems. She does have the terrible sinus problems but that is it. Like I tell Stacia she is not going to die from a stomach ache. They do treat her like any other CF patient just to make sure that she stays in the best health possible. Things will be ok for you I swear, We went for nine years before Stacia was even diagnosed and now I can see how much better she is now that we are being treated. Hang in there it will get easier. I know it is hard at first, we were like you too noone else in our family has CF so we didn't know much about it. We only knew the horrible things about it, but that is not always the case. I feel like you will be just like us. If you want to talk just message me I will try to help ya. Susan
 
S

Stacia

Guest
Hi Jana, Just want to let you know that Stacia was DX with the very same thing. She had the 5T Variance, the positive thing about it that they believe that your child will be A-typical. Stacia does have the digestive problems, but not much of the lung problems. She does have the terrible sinus problems but that is it. Like I tell Stacia she is not going to die from a stomach ache. They do treat her like any other CF patient just to make sure that she stays in the best health possible. Things will be ok for you I swear, We went for nine years before Stacia was even diagnosed and now I can see how much better she is now that we are being treated. Hang in there it will get easier. I know it is hard at first, we were like you too noone else in our family has CF so we didn't know much about it. We only knew the horrible things about it, but that is not always the case. I feel like you will be just like us. If you want to talk just message me I will try to help ya. Susan
 
S

Stacia

Guest
Hi Jana, Just want to let you know that Stacia was DX with the very same thing. She had the 5T Variance, the positive thing about it that they believe that your child will be A-typical. Stacia does have the digestive problems, but not much of the lung problems. She does have the terrible sinus problems but that is it. Like I tell Stacia she is not going to die from a stomach ache. They do treat her like any other CF patient just to make sure that she stays in the best health possible. Things will be ok for you I swear, We went for nine years before Stacia was even diagnosed and now I can see how much better she is now that we are being treated. Hang in there it will get easier. I know it is hard at first, we were like you too noone else in our family has CF so we didn't know much about it. We only knew the horrible things about it, but that is not always the case. I feel like you will be just like us. If you want to talk just message me I will try to help ya. Susan
 
S

Stacia

Guest
Hi Jana, Just want to let you know that Stacia was DX with the very same thing. She had the 5T Variance, the positive thing about it that they believe that your child will be A-typical. Stacia does have the digestive problems, but not much of the lung problems. She does have the terrible sinus problems but that is it. Like I tell Stacia she is not going to die from a stomach ache. They do treat her like any other CF patient just to make sure that she stays in the best health possible. Things will be ok for you I swear, We went for nine years before Stacia was even diagnosed and now I can see how much better she is now that we are being treated. Hang in there it will get easier. I know it is hard at first, we were like you too noone else in our family has CF so we didn't know much about it. We only knew the horrible things about it, but that is not always the case. I feel like you will be just like us. If you want to talk just message me I will try to help ya. Susan
 
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