new to this site

[mum2kj]

Welcome Marksmom <img src="i/expressions/face-icon-small-smile.gif" border="0">

This site has sooooo much info on here, I only wish I had of been able to have this site when Kj was little.
My daughter is 14 and is in yr 10 this year.
Hope to hear more about you and your son <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Marksmom]

To all who have responded,
I am truly overwhelmed by your words and the genuine welcome. I do wish I had done this sooner, I never realized that having this kind of support system would help, but when I got home from work today I found myself wanting to check on this site. Well, a little bit more about my son Mark. Mark has the delta 508 gene and this was a shock to us when he was born, no other records of anyone else in the family with CF. Mark has been very fortunate as he has not had to be hopsitalized since his birth. The CF center here in Cleveland is wonderful and from what I can tell they are up on all the current treatments. Mark has the typical digestive problems and does have psuedonomas in his cultures, but his treatments are manageable. Does anyone else have their child or themselves on the high dosage Motrin therapy? Mark takes 1700 milligrams twice a day and that appears to really keep the lung inflamation down. He is on Pulmozyme, albuteral, and we do Tobramycin every other month, then switch to Cephalexain the opposite months.
I have to keep a spreadsheet and chart on the fridge to keep track of it all, cause I have to tell you that at 14, Mark believes he is invincible and if not for me hounding him, he would ignore alot of what he has to do.
I do see on the sight that alot of parents talk about the nutrional supplements, Mark hated them, so we tried an alternative. Whole chocolate milk. high in fat and calories and he drinks about 1/2 gallon a day. Might be something you can try if your kids dislike the supplements.

 

[Marksmom]

To all who have responded,
I am truly overwhelmed by your words and the genuine welcome. I do wish I had done this sooner, I never realized that having this kind of support system would help, but when I got home from work today I found myself wanting to check on this site. Well, a little bit more about my son Mark. Mark has the delta 508 gene and this was a shock to us when he was born, no other records of anyone else in the family with CF. Mark has been very fortunate as he has not had to be hopsitalized since his birth. The CF center here in Cleveland is wonderful and from what I can tell they are up on all the current treatments. Mark has the typical digestive problems and does have psuedonomas in his cultures, but his treatments are manageable. Does anyone else have their child or themselves on the high dosage Motrin therapy? Mark takes 1700 milligrams twice a day and that appears to really keep the lung inflamation down. He is on Pulmozyme, albuteral, and we do Tobramycin every other month, then switch to Cephalexain the opposite months.
I have to keep a spreadsheet and chart on the fridge to keep track of it all, cause I have to tell you that at 14, Mark believes he is invincible and if not for me hounding him, he would ignore alot of what he has to do.
I do see on the sight that alot of parents talk about the nutrional supplements, Mark hated them, so we tried an alternative. Whole chocolate milk. high in fat and calories and he drinks about 1/2 gallon a day. Might be something you can try if your kids dislike the supplements.

 

[Marksmom]

To all who have responded,
I am truly overwhelmed by your words and the genuine welcome. I do wish I had done this sooner, I never realized that having this kind of support system would help, but when I got home from work today I found myself wanting to check on this site. Well, a little bit more about my son Mark. Mark has the delta 508 gene and this was a shock to us when he was born, no other records of anyone else in the family with CF. Mark has been very fortunate as he has not had to be hopsitalized since his birth. The CF center here in Cleveland is wonderful and from what I can tell they are up on all the current treatments. Mark has the typical digestive problems and does have psuedonomas in his cultures, but his treatments are manageable. Does anyone else have their child or themselves on the high dosage Motrin therapy? Mark takes 1700 milligrams twice a day and that appears to really keep the lung inflamation down. He is on Pulmozyme, albuteral, and we do Tobramycin every other month, then switch to Cephalexain the opposite months.
I have to keep a spreadsheet and chart on the fridge to keep track of it all, cause I have to tell you that at 14, Mark believes he is invincible and if not for me hounding him, he would ignore alot of what he has to do.
I do see on the sight that alot of parents talk about the nutrional supplements, Mark hated them, so we tried an alternative. Whole chocolate milk. high in fat and calories and he drinks about 1/2 gallon a day. Might be something you can try if your kids dislike the supplements.

 

[CowTown]

Hi Kathy,

Welcome! Your last post has the sound of being hooked already. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I too am the only known person in my family line of having CF. I am the lucky one!

One thing about the high dose motrin, I didn't realize doctors were still prescribing that therapy. I would highly recommend looking into it yourself, if you haven't already and determine if you think it's safe enough. I was given the choice of doing it 20+ years ago and felt the risks were too high.

Welcome!

 

[CowTown]

Hi Kathy,

Welcome! Your last post has the sound of being hooked already. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I too am the only known person in my family line of having CF. I am the lucky one!

One thing about the high dose motrin, I didn't realize doctors were still prescribing that therapy. I would highly recommend looking into it yourself, if you haven't already and determine if you think it's safe enough. I was given the choice of doing it 20+ years ago and felt the risks were too high.

Welcome!

 

[CowTown]

Hi Kathy,

Welcome! Your last post has the sound of being hooked already. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I too am the only known person in my family line of having CF. I am the lucky one!

One thing about the high dose motrin, I didn't realize doctors were still prescribing that therapy. I would highly recommend looking into it yourself, if you haven't already and determine if you think it's safe enough. I was given the choice of doing it 20+ years ago and felt the risks were too high.

Welcome!

 

[Marksmom]

Mark has been on the Motrin for about 10 years, he goes for Kinectic blood studies on a regular basis. about 10 years ago there was a clinical trial in Cleveland for the Motrin therpay for children and the benefits outweighed the risks and it has done wonders so far. Our doctors are associated with the Childrens research department of Rainbow Babies and Childrens hospital of Cleveland and Mark was one of the first "kids" to start the therapy after the clinical trials.

I do have question,does anyone out there ever heard of Rheumatoid Arthritis assocaited with CF? Mark had it and no one is exactly clear if this is a seperate issue or CF related.

 

[Marksmom]

Mark has been on the Motrin for about 10 years, he goes for Kinectic blood studies on a regular basis. about 10 years ago there was a clinical trial in Cleveland for the Motrin therpay for children and the benefits outweighed the risks and it has done wonders so far. Our doctors are associated with the Childrens research department of Rainbow Babies and Childrens hospital of Cleveland and Mark was one of the first "kids" to start the therapy after the clinical trials.

I do have question,does anyone out there ever heard of Rheumatoid Arthritis assocaited with CF? Mark had it and no one is exactly clear if this is a seperate issue or CF related.

 

[Marksmom]

Mark has been on the Motrin for about 10 years, he goes for Kinectic blood studies on a regular basis. about 10 years ago there was a clinical trial in Cleveland for the Motrin therpay for children and the benefits outweighed the risks and it has done wonders so far. Our doctors are associated with the Childrens research department of Rainbow Babies and Childrens hospital of Cleveland and Mark was one of the first "kids" to start the therapy after the clinical trials.

I do have question,does anyone out there ever heard of Rheumatoid Arthritis assocaited with CF? Mark had it and no one is exactly clear if this is a seperate issue or CF related.

 

[JazzysMom]

Glad to hear that Mark can tolerate this therapy. As far as arthritis. I think a lot depends on the doctor. Some meds can cause joint pains so people might say its CF related since that med is for CF, but the CF isnt necessarily causing the pain. You see what I mean?!

 

[JazzysMom]

Glad to hear that Mark can tolerate this therapy. As far as arthritis. I think a lot depends on the doctor. Some meds can cause joint pains so people might say its CF related since that med is for CF, but the CF isnt necessarily causing the pain. You see what I mean?!

 

[JazzysMom]

Glad to hear that Mark can tolerate this therapy. As far as arthritis. I think a lot depends on the doctor. Some meds can cause joint pains so people might say its CF related since that med is for CF, but the CF isnt necessarily causing the pain. You see what I mean?!

 

[zoe4life]

Welcome Kathy!
This site is addictive, but extremely helpful! When our little one was diagnosed at 1, we had no support. I found this site about 7-8 months after, it has helped me so much. I don't have much time to write, but I read a lot. I have found it very comforting knowing that so many other moms, dads, and the adults with cf have so many of the emotional feelings that I feel about cf.
Enjoy and we all look forward to getting to know you!
Jada
Zoe's mom

 

[zoe4life]

Welcome Kathy!
This site is addictive, but extremely helpful! When our little one was diagnosed at 1, we had no support. I found this site about 7-8 months after, it has helped me so much. I don't have much time to write, but I read a lot. I have found it very comforting knowing that so many other moms, dads, and the adults with cf have so many of the emotional feelings that I feel about cf.
Enjoy and we all look forward to getting to know you!
Jada
Zoe's mom

 

[zoe4life]

Welcome Kathy!
This site is addictive, but extremely helpful! When our little one was diagnosed at 1, we had no support. I found this site about 7-8 months after, it has helped me so much. I don't have much time to write, but I read a lot. I have found it very comforting knowing that so many other moms, dads, and the adults with cf have so many of the emotional feelings that I feel about cf.
Enjoy and we all look forward to getting to know you!
Jada
Zoe's mom

 

[Marksmom]

is is just me or does it seem that most people with CF have other "diseases" as well? I am sitting here reading the boards and it just struck me that there appears to be more than just CF involved with almost everyone, or is it just easier for the docs to find more problems since we are so involved with hospitals? It has been a long day and I just may be seeing things. A full day at work, then the gym and finally home to make sure dinner and homework are done.
I went back to work when Mark was in second grade, mostly for the Health insurance. The field I am in has better health coverage available to us then what my husband can get so here I am. I was lucky to be home for the first 7 years so that we could get a handle on this CF stuff, so I now have the confidence and the organization to somehow manage it. How about the rest of you?

 

[Marksmom]

is is just me or does it seem that most people with CF have other "diseases" as well? I am sitting here reading the boards and it just struck me that there appears to be more than just CF involved with almost everyone, or is it just easier for the docs to find more problems since we are so involved with hospitals? It has been a long day and I just may be seeing things. A full day at work, then the gym and finally home to make sure dinner and homework are done.
I went back to work when Mark was in second grade, mostly for the Health insurance. The field I am in has better health coverage available to us then what my husband can get so here I am. I was lucky to be home for the first 7 years so that we could get a handle on this CF stuff, so I now have the confidence and the organization to somehow manage it. How about the rest of you?

 

[Marksmom]

is is just me or does it seem that most people with CF have other "diseases" as well? I am sitting here reading the boards and it just struck me that there appears to be more than just CF involved with almost everyone, or is it just easier for the docs to find more problems since we are so involved with hospitals? It has been a long day and I just may be seeing things. A full day at work, then the gym and finally home to make sure dinner and homework are done.
I went back to work when Mark was in second grade, mostly for the Health insurance. The field I am in has better health coverage available to us then what my husband can get so here I am. I was lucky to be home for the first 7 years so that we could get a handle on this CF stuff, so I now have the confidence and the organization to somehow manage it. How about the rest of you?