New to ALL of this! Similar stories?

[chattyfamily]

Hi, I am new to this site. This is my first post. My one year old son, born 3-17-06 was just diagnosed on February 20th. He has 2 mutations, DF508 and 1717G>A. He was a very difficult baby, I thought I would have it down pat by the third! He had bulky stools, but most obvious was his growth. He was failure to thrive until they did 2 sweat tests, both results in the 100's and then the genetic test. He is on enzymes which have helped a ton! He has gained 4 lbs. since diagnosis! He is now 19lbs. He has not had any lung problems so far but just tested positive for staphylococcus aureus in his last throat culture. I really don't know what that means. Can anyone sum that up?
We have not started PT because of acid reflux, but I suspect we will start it soon. We have an appointment tomorrow. How young do you start the airway clearances? Did anyone start them without any respiratory problems? Is it something we need to start now as a preventative measure? How old do they have to be to use the vest? My feeling is if they are going to eventually have to do PT, I would l think start it early so they get used to it.
I don't know, everything is so new. Right now it is just enzymes, Prevacid, Singulair, 2 albuterol breathing treaments and vitamins. I know every case is different, but is it enevitable that we will have to add more to our regimen? What are some things that I can realistically expect that maybe the drs. don't want to speculate about with me?
I know I have asked a lot of ??'s, but any answers or similar stories would be great.
Thanks,
Melissa
Mom to 3!
Son:
Porter (3/17/07)- CF - Delta F508 and 1717G>A
and two daughters:
Macey (3/02/03) - no CF, Carrier - Delta F508
and
Sydney (8/18/99) - No CF, Not a carrier

 

[chattyfamily]

Hi, I am new to this site. This is my first post. My one year old son, born 3-17-06 was just diagnosed on February 20th. He has 2 mutations, DF508 and 1717G>A. He was a very difficult baby, I thought I would have it down pat by the third! He had bulky stools, but most obvious was his growth. He was failure to thrive until they did 2 sweat tests, both results in the 100's and then the genetic test. He is on enzymes which have helped a ton! He has gained 4 lbs. since diagnosis! He is now 19lbs. He has not had any lung problems so far but just tested positive for staphylococcus aureus in his last throat culture. I really don't know what that means. Can anyone sum that up?
We have not started PT because of acid reflux, but I suspect we will start it soon. We have an appointment tomorrow. How young do you start the airway clearances? Did anyone start them without any respiratory problems? Is it something we need to start now as a preventative measure? How old do they have to be to use the vest? My feeling is if they are going to eventually have to do PT, I would l think start it early so they get used to it.
I don't know, everything is so new. Right now it is just enzymes, Prevacid, Singulair, 2 albuterol breathing treaments and vitamins. I know every case is different, but is it enevitable that we will have to add more to our regimen? What are some things that I can realistically expect that maybe the drs. don't want to speculate about with me?
I know I have asked a lot of ??'s, but any answers or similar stories would be great.
Thanks,
Melissa
Mom to 3!
Son:
Porter (3/17/07)- CF - Delta F508 and 1717G>A
and two daughters:
Macey (3/02/03) - no CF, Carrier - Delta F508
and
Sydney (8/18/99) - No CF, Not a carrier

 

[chattyfamily]

Hi, I am new to this site. This is my first post. My one year old son, born 3-17-06 was just diagnosed on February 20th. He has 2 mutations, DF508 and 1717G>A. He was a very difficult baby, I thought I would have it down pat by the third! He had bulky stools, but most obvious was his growth. He was failure to thrive until they did 2 sweat tests, both results in the 100's and then the genetic test. He is on enzymes which have helped a ton! He has gained 4 lbs. since diagnosis! He is now 19lbs. He has not had any lung problems so far but just tested positive for staphylococcus aureus in his last throat culture. I really don't know what that means. Can anyone sum that up?
We have not started PT because of acid reflux, but I suspect we will start it soon. We have an appointment tomorrow. How young do you start the airway clearances? Did anyone start them without any respiratory problems? Is it something we need to start now as a preventative measure? How old do they have to be to use the vest? My feeling is if they are going to eventually have to do PT, I would l think start it early so they get used to it.
I don't know, everything is so new. Right now it is just enzymes, Prevacid, Singulair, 2 albuterol breathing treaments and vitamins. I know every case is different, but is it enevitable that we will have to add more to our regimen? What are some things that I can realistically expect that maybe the drs. don't want to speculate about with me?
I know I have asked a lot of ??'s, but any answers or similar stories would be great.
Thanks,
Melissa
Mom to 3!
Son:
Porter (3/17/07)- CF - Delta F508 and 1717G>A
and two daughters:
Macey (3/02/03) - no CF, Carrier - Delta F508
and
Sydney (8/18/99) - No CF, Not a carrier

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>chattyfamily</b></i>
t just tested positive for staphylococcus aureus in his last throat culture. I really don't know what that means. Can anyone sum that up? </end quote></div>

Welcome.

that is typical for CFers.... Usually Staph first, then maybe some H. Flu and sooner rather than later, Pseudomonas aeruginosa (PA).

<div class="FTQUOTE"><begin quote> How young do you start the airway clearances? Did anyone start them without any respiratory problems? Is it something we need to start now as a preventative measure? How old do they have to be to use the vest? My feeling is if they are going to eventually have to do PT, I would l think start it early so they get used to it. </end quote></div>

Airway clearance can start right away (manual CPT). Vest can start at 12 months, according to Dr. Warwick, the man who invented the Vest. It's important to start airway clearance right away as preventative therapy. THe goal with CF isn't to treat symptoms when the arise, but rather to prevent them. This preseves lung function and prolongs life.

<div class="FTQUOTE"><begin quote> but is it enevitable that we will have to add more to our regimen? </end quote></div>


Yes, it's inevitable. It's a progressive disease....

<div class="FTQUOTE"><begin quote>What are some things that I can realistically expect that maybe the drs. don't want to speculate about with me? </end quote></div>

You can expect that the doctors don't know everything. It's a small disease state (only 30,000 in the US) and there are many approaches to treating the disease. Be prepared to do your own research (coming to this site is a great way to do research) and to be <b>proactive </b> with your physician regarding therapy. They might not suggest some therapies for whatever reason that your child should be on. Just the way it is.

Take care

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>chattyfamily</b></i>
t just tested positive for staphylococcus aureus in his last throat culture. I really don't know what that means. Can anyone sum that up? </end quote></div>

Welcome.

that is typical for CFers.... Usually Staph first, then maybe some H. Flu and sooner rather than later, Pseudomonas aeruginosa (PA).

<div class="FTQUOTE"><begin quote> How young do you start the airway clearances? Did anyone start them without any respiratory problems? Is it something we need to start now as a preventative measure? How old do they have to be to use the vest? My feeling is if they are going to eventually have to do PT, I would l think start it early so they get used to it. </end quote></div>

Airway clearance can start right away (manual CPT). Vest can start at 12 months, according to Dr. Warwick, the man who invented the Vest. It's important to start airway clearance right away as preventative therapy. THe goal with CF isn't to treat symptoms when the arise, but rather to prevent them. This preseves lung function and prolongs life.

<div class="FTQUOTE"><begin quote> but is it enevitable that we will have to add more to our regimen? </end quote></div>


Yes, it's inevitable. It's a progressive disease....

<div class="FTQUOTE"><begin quote>What are some things that I can realistically expect that maybe the drs. don't want to speculate about with me? </end quote></div>

You can expect that the doctors don't know everything. It's a small disease state (only 30,000 in the US) and there are many approaches to treating the disease. Be prepared to do your own research (coming to this site is a great way to do research) and to be <b>proactive </b> with your physician regarding therapy. They might not suggest some therapies for whatever reason that your child should be on. Just the way it is.

Take care

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>chattyfamily</b></i>
t just tested positive for staphylococcus aureus in his last throat culture. I really don't know what that means. Can anyone sum that up? </end quote></div>

Welcome.

that is typical for CFers.... Usually Staph first, then maybe some H. Flu and sooner rather than later, Pseudomonas aeruginosa (PA).

<div class="FTQUOTE"><begin quote> How young do you start the airway clearances? Did anyone start them without any respiratory problems? Is it something we need to start now as a preventative measure? How old do they have to be to use the vest? My feeling is if they are going to eventually have to do PT, I would l think start it early so they get used to it. </end quote></div>

Airway clearance can start right away (manual CPT). Vest can start at 12 months, according to Dr. Warwick, the man who invented the Vest. It's important to start airway clearance right away as preventative therapy. THe goal with CF isn't to treat symptoms when the arise, but rather to prevent them. This preseves lung function and prolongs life.

<div class="FTQUOTE"><begin quote> but is it enevitable that we will have to add more to our regimen? </end quote></div>


Yes, it's inevitable. It's a progressive disease....

<div class="FTQUOTE"><begin quote>What are some things that I can realistically expect that maybe the drs. don't want to speculate about with me? </end quote></div>

You can expect that the doctors don't know everything. It's a small disease state (only 30,000 in the US) and there are many approaches to treating the disease. Be prepared to do your own research (coming to this site is a great way to do research) and to be <b>proactive </b> with your physician regarding therapy. They might not suggest some therapies for whatever reason that your child should be on. Just the way it is.

Take care

 

[tammykrumrey]

Hi Melissa, and welcome! I have two daughters with CF, the first was dx at 14 months (who also was a very difficult baby<img src="i/expressions/face-icon-small-sad.gif" border="0">) after becoming malnourished and having rectal prolapses. I was 5 months pregnant with my second daughter at the time, and she was dx at one month with a positive sweat test and genetic screening. The doctor did not start PT on them immediately. But within a few months we started adding it into the routine. I was already pretty familiar with how to do the PT because my nephew also has CF, and he was 7 years old at the time of the dx of my girls CF. Neither daughter had respirtatory problems when we started airway clearance. And still do pretty good.

The best advice I can give you is to educate yourself (which it looks like you are already doing) and to make sure you bring a notebook to your doctor appts. I keep one (a small spiral notebook) in my purse at all times. If I think of a question, I write it down in a special section so I can ask at our next appt. And in this notebook I document weight, height, PFT's, O2 sats, what bacteria they culture, etc. I right down meds that are given and everything suggested at the appt. I like to keep this one with me all the time because I never know when I might need the information<img src="i/expressions/face-icon-small-smile.gif" border="0"> I also keep binders on both girls with the actual print outs of the PFT results, the lab results, culture results, X-rays and CT results. I also have a growth chart in the binder for both girls to keep track of where they are.

Both of my girls do culture Staph, and we just go on antibiotics when it flares up. It is a common CF 'bug'. You will have a lot of questions. That is only to be expected. You have found a great place to come and ask for advice<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[tammykrumrey]

Hi Melissa, and welcome! I have two daughters with CF, the first was dx at 14 months (who also was a very difficult baby<img src="i/expressions/face-icon-small-sad.gif" border="0">) after becoming malnourished and having rectal prolapses. I was 5 months pregnant with my second daughter at the time, and she was dx at one month with a positive sweat test and genetic screening. The doctor did not start PT on them immediately. But within a few months we started adding it into the routine. I was already pretty familiar with how to do the PT because my nephew also has CF, and he was 7 years old at the time of the dx of my girls CF. Neither daughter had respirtatory problems when we started airway clearance. And still do pretty good.

The best advice I can give you is to educate yourself (which it looks like you are already doing) and to make sure you bring a notebook to your doctor appts. I keep one (a small spiral notebook) in my purse at all times. If I think of a question, I write it down in a special section so I can ask at our next appt. And in this notebook I document weight, height, PFT's, O2 sats, what bacteria they culture, etc. I right down meds that are given and everything suggested at the appt. I like to keep this one with me all the time because I never know when I might need the information<img src="i/expressions/face-icon-small-smile.gif" border="0"> I also keep binders on both girls with the actual print outs of the PFT results, the lab results, culture results, X-rays and CT results. I also have a growth chart in the binder for both girls to keep track of where they are.

Both of my girls do culture Staph, and we just go on antibiotics when it flares up. It is a common CF 'bug'. You will have a lot of questions. That is only to be expected. You have found a great place to come and ask for advice<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[tammykrumrey]

Hi Melissa, and welcome! I have two daughters with CF, the first was dx at 14 months (who also was a very difficult baby<img src="i/expressions/face-icon-small-sad.gif" border="0">) after becoming malnourished and having rectal prolapses. I was 5 months pregnant with my second daughter at the time, and she was dx at one month with a positive sweat test and genetic screening. The doctor did not start PT on them immediately. But within a few months we started adding it into the routine. I was already pretty familiar with how to do the PT because my nephew also has CF, and he was 7 years old at the time of the dx of my girls CF. Neither daughter had respirtatory problems when we started airway clearance. And still do pretty good.

The best advice I can give you is to educate yourself (which it looks like you are already doing) and to make sure you bring a notebook to your doctor appts. I keep one (a small spiral notebook) in my purse at all times. If I think of a question, I write it down in a special section so I can ask at our next appt. And in this notebook I document weight, height, PFT's, O2 sats, what bacteria they culture, etc. I right down meds that are given and everything suggested at the appt. I like to keep this one with me all the time because I never know when I might need the information<img src="i/expressions/face-icon-small-smile.gif" border="0"> I also keep binders on both girls with the actual print outs of the PFT results, the lab results, culture results, X-rays and CT results. I also have a growth chart in the binder for both girls to keep track of where they are.

Both of my girls do culture Staph, and we just go on antibiotics when it flares up. It is a common CF 'bug'. You will have a lot of questions. That is only to be expected. You have found a great place to come and ask for advice<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ratatosk]

DS started CPT (Chest Physiotherapy) when he was about a week old. Was born with meconium illeus and needed surgery to unblock his bowels, fix the damage when he was a day old. His doctor stressed proper lung care -- CPT 3-4 times a day for 15-20 minutes even though his lungs weren't affected. He was on zantac for reflux, stopped when he was about a year old. Enzymes, Actigall (bile salts) to keep his liver & gall bladder happy, albuterol & atrovent nebs, zithromax, pulmozyme and because he cultured pseudomonas in the past he's on Tobi nebs every other month.

We didn't get the vest until last Fall -- DS is 3. Depends on size; however, our doctor prefers using CPT for the first couple years. I know of parents who've gotten vests for their kids as young as a year though most get them at 1 1/2 or 2 years.

 

[Ratatosk]

DS started CPT (Chest Physiotherapy) when he was about a week old. Was born with meconium illeus and needed surgery to unblock his bowels, fix the damage when he was a day old. His doctor stressed proper lung care -- CPT 3-4 times a day for 15-20 minutes even though his lungs weren't affected. He was on zantac for reflux, stopped when he was about a year old. Enzymes, Actigall (bile salts) to keep his liver & gall bladder happy, albuterol & atrovent nebs, zithromax, pulmozyme and because he cultured pseudomonas in the past he's on Tobi nebs every other month.

We didn't get the vest until last Fall -- DS is 3. Depends on size; however, our doctor prefers using CPT for the first couple years. I know of parents who've gotten vests for their kids as young as a year though most get them at 1 1/2 or 2 years.

 

[Ratatosk]

DS started CPT (Chest Physiotherapy) when he was about a week old. Was born with meconium illeus and needed surgery to unblock his bowels, fix the damage when he was a day old. His doctor stressed proper lung care -- CPT 3-4 times a day for 15-20 minutes even though his lungs weren't affected. He was on zantac for reflux, stopped when he was about a year old. Enzymes, Actigall (bile salts) to keep his liver & gall bladder happy, albuterol & atrovent nebs, zithromax, pulmozyme and because he cultured pseudomonas in the past he's on Tobi nebs every other month.

We didn't get the vest until last Fall -- DS is 3. Depends on size; however, our doctor prefers using CPT for the first couple years. I know of parents who've gotten vests for their kids as young as a year though most get them at 1 1/2 or 2 years.

 

[chattyfamily]

Wow! All this stuff seems like so much! Esp. Liza! Your regimen seem like SO much more than ours! Is that what I can expect? I have been having the feeling like we need to get going on the CPT stuff and I am going to insist on it tomorrow, if they don't suggest it anyway. When do they start PFT's? My dr. said as early as 4. She is involved in developing a way to test earlier.
It is so hard to balance between knowing your case is it's own case and then not wanting to be so naive about what COULD happen. I guess I have been living in my own little world thinking we will just have to do these few simple things and that is how it is going to be forever. Seems like our Drs. don't want to upset us with the "what-ifs." But then, how will I know?

 

[chattyfamily]

Wow! All this stuff seems like so much! Esp. Liza! Your regimen seem like SO much more than ours! Is that what I can expect? I have been having the feeling like we need to get going on the CPT stuff and I am going to insist on it tomorrow, if they don't suggest it anyway. When do they start PFT's? My dr. said as early as 4. She is involved in developing a way to test earlier.
It is so hard to balance between knowing your case is it's own case and then not wanting to be so naive about what COULD happen. I guess I have been living in my own little world thinking we will just have to do these few simple things and that is how it is going to be forever. Seems like our Drs. don't want to upset us with the "what-ifs." But then, how will I know?

 

[chattyfamily]

Wow! All this stuff seems like so much! Esp. Liza! Your regimen seem like SO much more than ours! Is that what I can expect? I have been having the feeling like we need to get going on the CPT stuff and I am going to insist on it tomorrow, if they don't suggest it anyway. When do they start PFT's? My dr. said as early as 4. She is involved in developing a way to test earlier.
It is so hard to balance between knowing your case is it's own case and then not wanting to be so naive about what COULD happen. I guess I have been living in my own little world thinking we will just have to do these few simple things and that is how it is going to be forever. Seems like our Drs. don't want to upset us with the "what-ifs." But then, how will I know?

 

[zoe4life]

Melissa,

Hi! Congratulations on finding this site so quickly. It took me a while after Zoe's diagnosis. It has been a huge help to me. Not only for information, but an extreme emotional help.
Amy answered your questions exactly how I would have. I just wanted to tell you to read my blog Zoe4Life. Our 2 little ones sound very much alike. Zoe had failure to thrive, 24 dr. visits her first 11 months, me knowing something was really wrong, etc...She only weighed 14 lbs. at 1 year. She was diagnosed on the eve of her 1st birthday.
She is on Creon, Zantac, Zyrtec, Vitamax, sometimes Miralax. She was on oral antibiotics 8 out of 12 months in 2006, and only 1 hospitilazation (for a small bowel obstruction). She does pretty good overall. She will be 3 on Saturday. She weighs 29lbs now!
We started albuterol treatments 2x a day immediately, followed by CPT. It definately is better to get them used to it early. There will be days, don't get me wrong, that he will fight both of them. But we are responsible for their medical care, they can't make those decisions, so we have to do it for them.
Zoe now has the vest. She got it in November. It is great! She has the smallest size that the Incourage makes, and I'm pretty sure it is the smallest on the market. Their chest circum. needs to be around 20.
Zoe also has the exact same genes as your son. I have only met a couple of people with those exact mutations. They are class 1 and 2 mutations.

Feel free to contact me if you want to talk, I know how hard this is.

Love,

 

[zoe4life]

Melissa,

Hi! Congratulations on finding this site so quickly. It took me a while after Zoe's diagnosis. It has been a huge help to me. Not only for information, but an extreme emotional help.
Amy answered your questions exactly how I would have. I just wanted to tell you to read my blog Zoe4Life. Our 2 little ones sound very much alike. Zoe had failure to thrive, 24 dr. visits her first 11 months, me knowing something was really wrong, etc...She only weighed 14 lbs. at 1 year. She was diagnosed on the eve of her 1st birthday.
She is on Creon, Zantac, Zyrtec, Vitamax, sometimes Miralax. She was on oral antibiotics 8 out of 12 months in 2006, and only 1 hospitilazation (for a small bowel obstruction). She does pretty good overall. She will be 3 on Saturday. She weighs 29lbs now!
We started albuterol treatments 2x a day immediately, followed by CPT. It definately is better to get them used to it early. There will be days, don't get me wrong, that he will fight both of them. But we are responsible for their medical care, they can't make those decisions, so we have to do it for them.
Zoe now has the vest. She got it in November. It is great! She has the smallest size that the Incourage makes, and I'm pretty sure it is the smallest on the market. Their chest circum. needs to be around 20.
Zoe also has the exact same genes as your son. I have only met a couple of people with those exact mutations. They are class 1 and 2 mutations.

Feel free to contact me if you want to talk, I know how hard this is.

Love,

 

[zoe4life]

Melissa,

Hi! Congratulations on finding this site so quickly. It took me a while after Zoe's diagnosis. It has been a huge help to me. Not only for information, but an extreme emotional help.
Amy answered your questions exactly how I would have. I just wanted to tell you to read my blog Zoe4Life. Our 2 little ones sound very much alike. Zoe had failure to thrive, 24 dr. visits her first 11 months, me knowing something was really wrong, etc...She only weighed 14 lbs. at 1 year. She was diagnosed on the eve of her 1st birthday.
She is on Creon, Zantac, Zyrtec, Vitamax, sometimes Miralax. She was on oral antibiotics 8 out of 12 months in 2006, and only 1 hospitilazation (for a small bowel obstruction). She does pretty good overall. She will be 3 on Saturday. She weighs 29lbs now!
We started albuterol treatments 2x a day immediately, followed by CPT. It definately is better to get them used to it early. There will be days, don't get me wrong, that he will fight both of them. But we are responsible for their medical care, they can't make those decisions, so we have to do it for them.
Zoe now has the vest. She got it in November. It is great! She has the smallest size that the Incourage makes, and I'm pretty sure it is the smallest on the market. Their chest circum. needs to be around 20.
Zoe also has the exact same genes as your son. I have only met a couple of people with those exact mutations. They are class 1 and 2 mutations.

Feel free to contact me if you want to talk, I know how hard this is.

Love,

 

[Ratatosk]

When DS was first diagnosed, I was so overwhelmed with all the meds, treatments, etc. and I remember thinking "why couldn't he have been diagnosed later on in life", so we'd have time to just get used to the idea of having an infant. Enjoy his. Which was silly and since that time I've met parents of children who weren't diagnosed until they were toddlers -- one told me that CPT took well over an hour because their 2 year old didn't understand suddenly why mommy & daddy were doing that -- she'd scream and try to escape. DS, would actually fall asleep during treatments.

As far as number of treatments, etc. Did seem overwhelming at first, but we got into a routine -- CPT/Vest starts at 6 a.m., 5:30 pm and 10 pm -- extra one during the day or middle of the night if DS isn't feeling well. When a new drug is added -- zithromax & pulmozyme a year and a half ago it took me awhile to get used to it -- I once again got overwhelmed, annoyed with adding one more thing to the mix. But whatever it takes to keep DS's lungs healthy.

 

[Ratatosk]

When DS was first diagnosed, I was so overwhelmed with all the meds, treatments, etc. and I remember thinking "why couldn't he have been diagnosed later on in life", so we'd have time to just get used to the idea of having an infant. Enjoy his. Which was silly and since that time I've met parents of children who weren't diagnosed until they were toddlers -- one told me that CPT took well over an hour because their 2 year old didn't understand suddenly why mommy & daddy were doing that -- she'd scream and try to escape. DS, would actually fall asleep during treatments.

As far as number of treatments, etc. Did seem overwhelming at first, but we got into a routine -- CPT/Vest starts at 6 a.m., 5:30 pm and 10 pm -- extra one during the day or middle of the night if DS isn't feeling well. When a new drug is added -- zithromax & pulmozyme a year and a half ago it took me awhile to get used to it -- I once again got overwhelmed, annoyed with adding one more thing to the mix. But whatever it takes to keep DS's lungs healthy.