Where to start...?

[unclet]

In the past, my brother has been kind enough to post some messages on this site (hence the Unclet login). I am writing to all of the mothers out there. We have been on this "Is it CF?" journey for a second time now. This time with sweat test results 48/42 (as opposed to 44/42 14 months prior) I am convinced that my baby has CF. I just received news yesterday that I am a carrier for one copy of the F508 mutation. This doesn't mean a whole lot to me - or even my doctor! I just know in my heart it isn't good news for my son...or possibly my other two boys.

My son and my husband have also had a gene test - due w/i the next few weeks. I know what the tests will say. My youngest (of three) is 2.5 years old and 22 lbs. on a good day. He has 5-6 bowel movements a day, but fortunately no respiratory issues as of now. We don't meet with the Children's GI doc until 11/22.

So - my question to all of you parents out there...
HOW do I begin dealing with this? HOW do I stay strong when I want to run and scream? HOW do I keep from crying in front of my children? HOW? My heart is breaking and I need to pull it together...fast. I'm not handling this very well. I really need some guidance...

Also, I wanted to say thank you to all of you who had responded to my brother's inquiries. I have been so wrapped up in all of this testing I have not dropped a proper Thank You for being kind enough to give us such priceless input.

Thank you!
Kris - Mother of 3 beautiful boys

 

[unclet]

In the past, my brother has been kind enough to post some messages on this site (hence the Unclet login). I am writing to all of the mothers out there. We have been on this "Is it CF?" journey for a second time now. This time with sweat test results 48/42 (as opposed to 44/42 14 months prior) I am convinced that my baby has CF. I just received news yesterday that I am a carrier for one copy of the F508 mutation. This doesn't mean a whole lot to me - or even my doctor! I just know in my heart it isn't good news for my son...or possibly my other two boys.

My son and my husband have also had a gene test - due w/i the next few weeks. I know what the tests will say. My youngest (of three) is 2.5 years old and 22 lbs. on a good day. He has 5-6 bowel movements a day, but fortunately no respiratory issues as of now. We don't meet with the Children's GI doc until 11/22.

So - my question to all of you parents out there...
HOW do I begin dealing with this? HOW do I stay strong when I want to run and scream? HOW do I keep from crying in front of my children? HOW? My heart is breaking and I need to pull it together...fast. I'm not handling this very well. I really need some guidance...

Also, I wanted to say thank you to all of you who had responded to my brother's inquiries. I have been so wrapped up in all of this testing I have not dropped a proper Thank You for being kind enough to give us such priceless input.

Thank you!
Kris - Mother of 3 beautiful boys

 

[unclet]

In the past, my brother has been kind enough to post some messages on this site (hence the Unclet login). I am writing to all of the mothers out there. We have been on this "Is it CF?" journey for a second time now. This time with sweat test results 48/42 (as opposed to 44/42 14 months prior) I am convinced that my baby has CF. I just received news yesterday that I am a carrier for one copy of the F508 mutation. This doesn't mean a whole lot to me - or even my doctor! I just know in my heart it isn't good news for my son...or possibly my other two boys.

My son and my husband have also had a gene test - due w/i the next few weeks. I know what the tests will say. My youngest (of three) is 2.5 years old and 22 lbs. on a good day. He has 5-6 bowel movements a day, but fortunately no respiratory issues as of now. We don't meet with the Children's GI doc until 11/22.

So - my question to all of you parents out there...
HOW do I begin dealing with this? HOW do I stay strong when I want to run and scream? HOW do I keep from crying in front of my children? HOW? My heart is breaking and I need to pull it together...fast. I'm not handling this very well. I really need some guidance...

Also, I wanted to say thank you to all of you who had responded to my brother's inquiries. I have been so wrapped up in all of this testing I have not dropped a proper Thank You for being kind enough to give us such priceless input.

Thank you!
Kris - Mother of 3 beautiful boys

 

[ktsmom]

I'm very sorry that you have these concerns; I know that this is an incredibly difficult time for you.

How do you begin dealing with this - Breathe; read about CF, but know when to stop. Maybe focus for now just on reading about treatments for whatever symptoms are showing up.

How do you stay strong - it is hard. Lean on friends, family, husband, pastors, the people on this site.

Crying in front of the kids - it was unavoidable for me, at first. Katy helped me by telling me not to be sad and that everything was going to be okay! She's 3! My children were an incredible source of strength (still are!)

See a counselor or your family physician; ask for anti-anxiety meds; been there, done that. I really needed that Xanax for the first 45 days or so. I've since been able to come off it.

Know that you CAN and WILL find the strength, as impossible as that seems now. Just let it happen at its own pace and don't be too hard on yourself. I personally have come SO far in the 2 1/2 months since Katy's diagnosis.

Have faith.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

I'm very sorry that you have these concerns; I know that this is an incredibly difficult time for you.

How do you begin dealing with this - Breathe; read about CF, but know when to stop. Maybe focus for now just on reading about treatments for whatever symptoms are showing up.

How do you stay strong - it is hard. Lean on friends, family, husband, pastors, the people on this site.

Crying in front of the kids - it was unavoidable for me, at first. Katy helped me by telling me not to be sad and that everything was going to be okay! She's 3! My children were an incredible source of strength (still are!)

See a counselor or your family physician; ask for anti-anxiety meds; been there, done that. I really needed that Xanax for the first 45 days or so. I've since been able to come off it.

Know that you CAN and WILL find the strength, as impossible as that seems now. Just let it happen at its own pace and don't be too hard on yourself. I personally have come SO far in the 2 1/2 months since Katy's diagnosis.

Have faith.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

I'm very sorry that you have these concerns; I know that this is an incredibly difficult time for you.

How do you begin dealing with this - Breathe; read about CF, but know when to stop. Maybe focus for now just on reading about treatments for whatever symptoms are showing up.

How do you stay strong - it is hard. Lean on friends, family, husband, pastors, the people on this site.

Crying in front of the kids - it was unavoidable for me, at first. Katy helped me by telling me not to be sad and that everything was going to be okay! She's 3! My children were an incredible source of strength (still are!)

See a counselor or your family physician; ask for anti-anxiety meds; been there, done that. I really needed that Xanax for the first 45 days or so. I've since been able to come off it.

Know that you CAN and WILL find the strength, as impossible as that seems now. Just let it happen at its own pace and don't be too hard on yourself. I personally have come SO far in the 2 1/2 months since Katy's diagnosis.

Have faith.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[unclet]

Thank you, Dana, for your reply. I am so sorry that you have had to travel this road - as I wouldn't wish it on anyone. I don't know why I find comfort in knowing that there is another mother out there who understands how I feel...especially if it means she must be suffering too. But, you're right about the kids. They are the first ones to make me laugh and make me smile! I was pleased to see that both of your daughters do not have CF. I am so worried that all three of mine will test positive. My doc has given me some anti-anxiety and also referred me to a therapist. Do you have any sites or books that you would recommend? Are there any CF support groups?? Thank you SO much for your response!! My head is throbbing from crying! I know I need to focus on all of the wondeful success stories I have seen on this site...I'm just having a hard time seeing the good. Best wishes to you and your family. Hugs to your little girls. Kris

 

[unclet]

Thank you, Dana, for your reply. I am so sorry that you have had to travel this road - as I wouldn't wish it on anyone. I don't know why I find comfort in knowing that there is another mother out there who understands how I feel...especially if it means she must be suffering too. But, you're right about the kids. They are the first ones to make me laugh and make me smile! I was pleased to see that both of your daughters do not have CF. I am so worried that all three of mine will test positive. My doc has given me some anti-anxiety and also referred me to a therapist. Do you have any sites or books that you would recommend? Are there any CF support groups?? Thank you SO much for your response!! My head is throbbing from crying! I know I need to focus on all of the wondeful success stories I have seen on this site...I'm just having a hard time seeing the good. Best wishes to you and your family. Hugs to your little girls. Kris

 

[unclet]

Thank you, Dana, for your reply. I am so sorry that you have had to travel this road - as I wouldn't wish it on anyone. I don't know why I find comfort in knowing that there is another mother out there who understands how I feel...especially if it means she must be suffering too. But, you're right about the kids. They are the first ones to make me laugh and make me smile! I was pleased to see that both of your daughters do not have CF. I am so worried that all three of mine will test positive. My doc has given me some anti-anxiety and also referred me to a therapist. Do you have any sites or books that you would recommend? Are there any CF support groups?? Thank you SO much for your response!! My head is throbbing from crying! I know I need to focus on all of the wondeful success stories I have seen on this site...I'm just having a hard time seeing the good. Best wishes to you and your family. Hugs to your little girls. Kris

 

[hikingmomde]

Hi. I'm new to all of this, too--just found out about a month ago that my 17 month old daughter has cf. I was screened during pregnancy, and my husband and I have no family history of CF, so this has all come as quite a shock. I now know that the screening isn't for all mutations, and I have done a lot of reading to become as informed as I can be about this disease.
My initial reaction to the news was actually one of relief that our family can finally treat our daughters symptoms to make her better. She was receiving treatment for asthma which was helping her repiratory issues, but I always knew something else was going on with her (never imagined it could be CF, though). Her meds are already helping more than I could have ever imagined. She's gaining weight, her bowel movements are MUCH less frequent and changed literally overnight.
Since the initial stage of relief, I definitely have bad days that are tough to get through. I am so fortunate to have a great support system that keeps me on track and reminds me to be strong, live for today. We quickly formed a team to participate in an upcoming Great Strides event and have collectively raised close to $7500 in less than a month. This was a great way for me to stay focused on the positive and to turn scary news into something that my friends and family could rally behind.
Being new to all of this, I can't offer much advice (since I don't have a lot of experience under my belt), but only the reassurance that there are others out there going through exactly what you are. This site has been a life saver for me (as long as I know how much is enough--I only allow myself 30 minutes a day to read so that I don't get too overwhelmed).
Good luck!

 

[hikingmomde]

Hi. I'm new to all of this, too--just found out about a month ago that my 17 month old daughter has cf. I was screened during pregnancy, and my husband and I have no family history of CF, so this has all come as quite a shock. I now know that the screening isn't for all mutations, and I have done a lot of reading to become as informed as I can be about this disease.
My initial reaction to the news was actually one of relief that our family can finally treat our daughters symptoms to make her better. She was receiving treatment for asthma which was helping her repiratory issues, but I always knew something else was going on with her (never imagined it could be CF, though). Her meds are already helping more than I could have ever imagined. She's gaining weight, her bowel movements are MUCH less frequent and changed literally overnight.
Since the initial stage of relief, I definitely have bad days that are tough to get through. I am so fortunate to have a great support system that keeps me on track and reminds me to be strong, live for today. We quickly formed a team to participate in an upcoming Great Strides event and have collectively raised close to $7500 in less than a month. This was a great way for me to stay focused on the positive and to turn scary news into something that my friends and family could rally behind.
Being new to all of this, I can't offer much advice (since I don't have a lot of experience under my belt), but only the reassurance that there are others out there going through exactly what you are. This site has been a life saver for me (as long as I know how much is enough--I only allow myself 30 minutes a day to read so that I don't get too overwhelmed).
Good luck!

 

[hikingmomde]

Hi. I'm new to all of this, too--just found out about a month ago that my 17 month old daughter has cf. I was screened during pregnancy, and my husband and I have no family history of CF, so this has all come as quite a shock. I now know that the screening isn't for all mutations, and I have done a lot of reading to become as informed as I can be about this disease.
My initial reaction to the news was actually one of relief that our family can finally treat our daughters symptoms to make her better. She was receiving treatment for asthma which was helping her repiratory issues, but I always knew something else was going on with her (never imagined it could be CF, though). Her meds are already helping more than I could have ever imagined. She's gaining weight, her bowel movements are MUCH less frequent and changed literally overnight.
Since the initial stage of relief, I definitely have bad days that are tough to get through. I am so fortunate to have a great support system that keeps me on track and reminds me to be strong, live for today. We quickly formed a team to participate in an upcoming Great Strides event and have collectively raised close to $7500 in less than a month. This was a great way for me to stay focused on the positive and to turn scary news into something that my friends and family could rally behind.
Being new to all of this, I can't offer much advice (since I don't have a lot of experience under my belt), but only the reassurance that there are others out there going through exactly what you are. This site has been a life saver for me (as long as I know how much is enough--I only allow myself 30 minutes a day to read so that I don't get too overwhelmed).
Good luck!

 

[Mommafirst]

The diagnosis is a tough one to swallow. I'm so sorry you are going through this, but if it helps at all, we have all been there. I'm about 5 months into this journey and I can still break into tears over it. Its not easy. But what really has helped me is information. Getting as much information as I can. Coming to this site, going to other sites, reading reading reading. The less unknown it all is, the easier it is to handle. Also I cry with my husband, talk to him, lean on him -- he is my rock and I am his.

I also have a lot of hope -- hope I will NOT let go of. Hope for treatments that are in the pipeline that might just make CF more of a nuisance than anything else; hope that since the median age has increased so much in the last thirty years that it will keep increasing and our babies have the hope of a normal life expectancy.

I wish I could tell you how to go through it all, but you just do. You have to get up each morning and put on a smile and be with your kids. They will never be this young again and they look to you to know how to react. Somehow, some way, life with CF just becomes a new normal -- a new language, a new routine, and lots of new friends to help you along the way. PM me or post if you ever need someone to listen!!

 

[Mommafirst]

The diagnosis is a tough one to swallow. I'm so sorry you are going through this, but if it helps at all, we have all been there. I'm about 5 months into this journey and I can still break into tears over it. Its not easy. But what really has helped me is information. Getting as much information as I can. Coming to this site, going to other sites, reading reading reading. The less unknown it all is, the easier it is to handle. Also I cry with my husband, talk to him, lean on him -- he is my rock and I am his.

I also have a lot of hope -- hope I will NOT let go of. Hope for treatments that are in the pipeline that might just make CF more of a nuisance than anything else; hope that since the median age has increased so much in the last thirty years that it will keep increasing and our babies have the hope of a normal life expectancy.

I wish I could tell you how to go through it all, but you just do. You have to get up each morning and put on a smile and be with your kids. They will never be this young again and they look to you to know how to react. Somehow, some way, life with CF just becomes a new normal -- a new language, a new routine, and lots of new friends to help you along the way. PM me or post if you ever need someone to listen!!

 

[Mommafirst]

The diagnosis is a tough one to swallow. I'm so sorry you are going through this, but if it helps at all, we have all been there. I'm about 5 months into this journey and I can still break into tears over it. Its not easy. But what really has helped me is information. Getting as much information as I can. Coming to this site, going to other sites, reading reading reading. The less unknown it all is, the easier it is to handle. Also I cry with my husband, talk to him, lean on him -- he is my rock and I am his.

I also have a lot of hope -- hope I will NOT let go of. Hope for treatments that are in the pipeline that might just make CF more of a nuisance than anything else; hope that since the median age has increased so much in the last thirty years that it will keep increasing and our babies have the hope of a normal life expectancy.

I wish I could tell you how to go through it all, but you just do. You have to get up each morning and put on a smile and be with your kids. They will never be this young again and they look to you to know how to react. Somehow, some way, life with CF just becomes a new normal -- a new language, a new routine, and lots of new friends to help you along the way. PM me or post if you ever need someone to listen!!

 

[benji26]

I agree with Heather I am about 14months into the CF journey, the first 12 was a blur. Try to find out as much information as you can and ask questions on this site. Sometimes if you ask a question it makes you feel so much better. My son is a double delta 508 and has about 6 to 7 poos a day with enzymes. So IF the diagnosis is CF at least you will know what it is and the medication will help immensly (think i spelt that one wrong) Hang in there us mums find the strength to do anything when we have to. I will be thinking of you.

Donna
Mum to Benjamin 14mths wcf
Monique 13yrs no cf
Daniel 14yrs no cf

 

[benji26]

I agree with Heather I am about 14months into the CF journey, the first 12 was a blur. Try to find out as much information as you can and ask questions on this site. Sometimes if you ask a question it makes you feel so much better. My son is a double delta 508 and has about 6 to 7 poos a day with enzymes. So IF the diagnosis is CF at least you will know what it is and the medication will help immensly (think i spelt that one wrong) Hang in there us mums find the strength to do anything when we have to. I will be thinking of you.

Donna
Mum to Benjamin 14mths wcf
Monique 13yrs no cf
Daniel 14yrs no cf

 

[benji26]

I agree with Heather I am about 14months into the CF journey, the first 12 was a blur. Try to find out as much information as you can and ask questions on this site. Sometimes if you ask a question it makes you feel so much better. My son is a double delta 508 and has about 6 to 7 poos a day with enzymes. So IF the diagnosis is CF at least you will know what it is and the medication will help immensly (think i spelt that one wrong) Hang in there us mums find the strength to do anything when we have to. I will be thinking of you.

Donna
Mum to Benjamin 14mths wcf
Monique 13yrs no cf
Daniel 14yrs no cf

 

[folione]

I'll cross a finger that it's not CF but that the Drs. do figure out what's causing the troubles. CF sucks, but being sick and not knowing why someone is suffering and being helpless to make them feel better is alot worse. There's no denying that my spouse and I sometimes feel pretty low that our son has CF - but most of the time we don't think about that and are happy that his diagnosis means we can give him what he needs to be healthy.

 

[folione]

I'll cross a finger that it's not CF but that the Drs. do figure out what's causing the troubles. CF sucks, but being sick and not knowing why someone is suffering and being helpless to make them feel better is alot worse. There's no denying that my spouse and I sometimes feel pretty low that our son has CF - but most of the time we don't think about that and are happy that his diagnosis means we can give him what he needs to be healthy.