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Robynnemarie

New member
I was told that my daughter had CF when she was 1 yr old. We had alot of problems until she was about 9 yrs old, and she just seemed to get better. I am not sure, but I don't think my daughter had the cf gene. Although she was tested almost 15 years ago.
Her diagnosis was based on 4 positive sweat test, positive fecal fat, failure to thrive, chronic uri, and cough. Along with a bunch of other issues. Her main symtoms were gastro related.
My husband is in complete denial that his baby has this disease. I may be in denial as well, but would like to learn as much as I can.
Last year Kate was hospitalized for acute pacreatitis, as well as severe upper resp infection, and her health has been declining since then.
She has chronic/acute pancreatitis, Vit K deficency, CF related diabetes. The doctors feel she may now be pancreatic insufficent, or becoming that way. Last year she was put on Tobi, and Pulmozyme, adek, vit K, and just this week they added pancreacarb and a coenzyme to her list of meds.
The doctor says Kate most likely has a genome variant CF ?????? I don't understand this. Also, that she has a mild form of the disease, and I asked if she could get worse, and the answer was yes, but she should do well.

Kate is 14... and is really being difficult with taking her meds.

Any advise, information you could give would be greatly appreciated.

Thank you,

Kates Mom
 
R

Robynnemarie

New member
I was told that my daughter had CF when she was 1 yr old. We had alot of problems until she was about 9 yrs old, and she just seemed to get better. I am not sure, but I don't think my daughter had the cf gene. Although she was tested almost 15 years ago.
Her diagnosis was based on 4 positive sweat test, positive fecal fat, failure to thrive, chronic uri, and cough. Along with a bunch of other issues. Her main symtoms were gastro related.
My husband is in complete denial that his baby has this disease. I may be in denial as well, but would like to learn as much as I can.
Last year Kate was hospitalized for acute pacreatitis, as well as severe upper resp infection, and her health has been declining since then.
She has chronic/acute pancreatitis, Vit K deficency, CF related diabetes. The doctors feel she may now be pancreatic insufficent, or becoming that way. Last year she was put on Tobi, and Pulmozyme, adek, vit K, and just this week they added pancreacarb and a coenzyme to her list of meds.
The doctor says Kate most likely has a genome variant CF ?????? I don't understand this. Also, that she has a mild form of the disease, and I asked if she could get worse, and the answer was yes, but she should do well.

Kate is 14... and is really being difficult with taking her meds.

Any advise, information you could give would be greatly appreciated.

Thank you,

Kates Mom
 
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anonymous

New member
My first question is if she was tested positive with sweat test four times and they were positive then she has CF and it will not go away. She may have had a few really good years and that is great, count your blessings. Have you always done her treatments and given her medicine. I know from going to some CF conferences and meeting a few CF adults and teens that there are different types of symptoms with CF such as some people may have way more gastro problems than lung problems and some may have more lung than gastro....some may have sinus problems versus gastro etc.

Maybe if your daughter is giving you problems you could have her get on this sight. I know that the teens and young adults on here that I have come into contact with are awesome and may give her enough support to make her realize how important her meds are.

As far as your husband is concerned he needs to try and realize how important this is and how his attitude will affect you and your daughter. She has a disease that requires special attention but that does not change who she is or what she can become. She needs both your support even though she may not act like it.

If you go to a CF clinic they usually have a social worker who can help with things like this. It may be beneficial for all of you to talk with him/her.

I hope this helps and good luck with everything. The meds they put her seem pretty normal for most CFers.


Teri
daughter 8 years old w/CF
 
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anonymous

New member
My first question is if she was tested positive with sweat test four times and they were positive then she has CF and it will not go away. She may have had a few really good years and that is great, count your blessings. Have you always done her treatments and given her medicine. I know from going to some CF conferences and meeting a few CF adults and teens that there are different types of symptoms with CF such as some people may have way more gastro problems than lung problems and some may have more lung than gastro....some may have sinus problems versus gastro etc.

Maybe if your daughter is giving you problems you could have her get on this sight. I know that the teens and young adults on here that I have come into contact with are awesome and may give her enough support to make her realize how important her meds are.

As far as your husband is concerned he needs to try and realize how important this is and how his attitude will affect you and your daughter. She has a disease that requires special attention but that does not change who she is or what she can become. She needs both your support even though she may not act like it.

If you go to a CF clinic they usually have a social worker who can help with things like this. It may be beneficial for all of you to talk with him/her.

I hope this helps and good luck with everything. The meds they put her seem pretty normal for most CFers.


Teri
daughter 8 years old w/CF
 
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anonymous

New member
Denial is a pretty normal thing to go through, but at some point I think everyone has to bite the bullet and admit something's wrong. Once that happens, it can be treated a lot better both physically and emotionally. All the things used for Kate's diagnosis sound like there's no question she has CF.. but can you ask to get a genetic test done? That way you can find out the exact genes she has.

One thing that informational websites/books etc tend to overlook or just not make a big deal out of, is that individual cases of CF can be SO different. For example, I was diagnosed at birth and have had minimal lung involvement my whole life. The symptoms I do have are more related to asthma than CF. I have been on digestive enzymes since I was young, but only take 2 with meals. I live a mainly normal life, but this doesn't mean I don't have CF. I also know that my "mild" case won't be this way forever, and there's no telling when I could take a turn for the worst. On the other side, I could stay this healthy for years and years. No-one knows what a CFers health is going to do for sure, but the best chance of keeping her healthy is to be vigilant about her treatment and taking precautions.

I don't really have any advice on how to get teenagers to comply, I'm sorry <img src="i/expressions/face-icon-small-tongue.gif" border="0"> I'm only 20 myself, and although I'm good at doing treatments and taking medication now, I was a little horror a few years ago too. Don't ask me why, that's just what teenagers do! I guess all you can do is be supportive of her. Maybe try getting her in contact [online, email etc] with some other people with CF who can relate to her.

Good luck,

Emma (20wcf, Australia)
 
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anonymous

New member
Denial is a pretty normal thing to go through, but at some point I think everyone has to bite the bullet and admit something's wrong. Once that happens, it can be treated a lot better both physically and emotionally. All the things used for Kate's diagnosis sound like there's no question she has CF.. but can you ask to get a genetic test done? That way you can find out the exact genes she has.

One thing that informational websites/books etc tend to overlook or just not make a big deal out of, is that individual cases of CF can be SO different. For example, I was diagnosed at birth and have had minimal lung involvement my whole life. The symptoms I do have are more related to asthma than CF. I have been on digestive enzymes since I was young, but only take 2 with meals. I live a mainly normal life, but this doesn't mean I don't have CF. I also know that my "mild" case won't be this way forever, and there's no telling when I could take a turn for the worst. On the other side, I could stay this healthy for years and years. No-one knows what a CFers health is going to do for sure, but the best chance of keeping her healthy is to be vigilant about her treatment and taking precautions.

I don't really have any advice on how to get teenagers to comply, I'm sorry <img src="i/expressions/face-icon-small-tongue.gif" border="0"> I'm only 20 myself, and although I'm good at doing treatments and taking medication now, I was a little horror a few years ago too. Don't ask me why, that's just what teenagers do! I guess all you can do is be supportive of her. Maybe try getting her in contact [online, email etc] with some other people with CF who can relate to her.

Good luck,

Emma (20wcf, Australia)
 
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Emily65Roses

New member
I think every person with CF wants to push that envelope somewhere in their teenage years. You can try counseling at a CF clinic or what have you, but if she really does NOT want to take her meds, there's not much you can do to force her. Most of us grow out of that though. I was bad for maybe a year or two, but now I'm back to being really careful with my meds and treatments. So if that's what she's doing, as hard as I imagine it must be, you have to let her learn her own lesson, become her own person and all that junk. That's my opinion, and I'm aware I'm not a parent. But I just went through that phase myself only a few years ago. So I do know what I'm talking about. Teri's right, though, you can always try some kind of CF clinic counseling first. That may make a difference.
 
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Emily65Roses

New member
I think every person with CF wants to push that envelope somewhere in their teenage years. You can try counseling at a CF clinic or what have you, but if she really does NOT want to take her meds, there's not much you can do to force her. Most of us grow out of that though. I was bad for maybe a year or two, but now I'm back to being really careful with my meds and treatments. So if that's what she's doing, as hard as I imagine it must be, you have to let her learn her own lesson, become her own person and all that junk. That's my opinion, and I'm aware I'm not a parent. But I just went through that phase myself only a few years ago. So I do know what I'm talking about. Teri's right, though, you can always try some kind of CF clinic counseling first. That may make a difference.
 
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anonymous

New member
Unfortunately, counseling comes along with such a stigma. There is a belief attached to it that says "If you need counseling, you are not strong and can't handle what life throws at you." It is my belief that a person who reaches out for help is STRONGER and more willing to change their life. I have seen counseling help my own family stay together - it's always worth a try. Remember that evey therapist is different and uses a different approach. If you don't feel comfortable with one, shop around until you do.

Emily also has a good point. Sometimes, tough love is the only way a teen/child will learn. If they see the consequences of their own actions (without your punishment or "see, I told you so"), then they'll learn for themselves. Hard stuff. I'm scared for the time my kids will be teens! Hang in there. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Carey
 
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anonymous

New member
Unfortunately, counseling comes along with such a stigma. There is a belief attached to it that says "If you need counseling, you are not strong and can't handle what life throws at you." It is my belief that a person who reaches out for help is STRONGER and more willing to change their life. I have seen counseling help my own family stay together - it's always worth a try. Remember that evey therapist is different and uses a different approach. If you don't feel comfortable with one, shop around until you do.

Emily also has a good point. Sometimes, tough love is the only way a teen/child will learn. If they see the consequences of their own actions (without your punishment or "see, I told you so"), then they'll learn for themselves. Hard stuff. I'm scared for the time my kids will be teens! Hang in there. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Carey
 
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Emily65Roses

New member
I agree with Carey on the counseling thing. A lot of people see it as "I'm weak," whereas I see it as "I'm strong enough to reach out for help when I know I need it." I've been seeing a therapist or psychiatrist since my freshman year in high school. Helps a lot, and I don't give a damn if other people don't like it. Hahaha. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
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Emily65Roses

New member
I agree with Carey on the counseling thing. A lot of people see it as "I'm weak," whereas I see it as "I'm strong enough to reach out for help when I know I need it." I've been seeing a therapist or psychiatrist since my freshman year in high school. Helps a lot, and I don't give a damn if other people don't like it. Hahaha. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
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