New to ALL of this! Similar stories?

[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.

 

[ktsmom]

Welcome Melissa!

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>chattyfamily</b></i>

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

That is an interesting question. I feel like I'm the type of person who needs to know. On our very first visit our CF doc mentioned the possibility of lung transplant as the disease progressed (and I thought DH was going to pass out). That said, if you don't know what you might be up against then how can you place the proper priority on the treatments? That's how my mind works, anyway.

Also, to quote you from your post in Newly Diagnosed,

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>chattyfamily</b></i>

Thank you so much. I have not been very emotional over the past month or two (trying to be strong for hubby and kids) but reading people's experiences gets me a little. Half for the fear of what is to come and half for the kindness and comfort in similar stories. Thank you.</end quote></div>

This is EXACTLY how I feel and why I keep coming back here. It is my way of processing it and it works for me, emotions and all. It is nice to have the people here to lean on.

 

[ktsmom]

Welcome Melissa!

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>chattyfamily</b></i>

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

That is an interesting question. I feel like I'm the type of person who needs to know. On our very first visit our CF doc mentioned the possibility of lung transplant as the disease progressed (and I thought DH was going to pass out). That said, if you don't know what you might be up against then how can you place the proper priority on the treatments? That's how my mind works, anyway.

Also, to quote you from your post in Newly Diagnosed,

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>chattyfamily</b></i>

Thank you so much. I have not been very emotional over the past month or two (trying to be strong for hubby and kids) but reading people's experiences gets me a little. Half for the fear of what is to come and half for the kindness and comfort in similar stories. Thank you.</end quote></div>

This is EXACTLY how I feel and why I keep coming back here. It is my way of processing it and it works for me, emotions and all. It is nice to have the people here to lean on.

 

[ktsmom]

Welcome Melissa!

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>chattyfamily</b></i>

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

That is an interesting question. I feel like I'm the type of person who needs to know. On our very first visit our CF doc mentioned the possibility of lung transplant as the disease progressed (and I thought DH was going to pass out). That said, if you don't know what you might be up against then how can you place the proper priority on the treatments? That's how my mind works, anyway.

Also, to quote you from your post in Newly Diagnosed,

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>chattyfamily</b></i>

Thank you so much. I have not been very emotional over the past month or two (trying to be strong for hubby and kids) but reading people's experiences gets me a little. Half for the fear of what is to come and half for the kindness and comfort in similar stories. Thank you.</end quote></div>

This is EXACTLY how I feel and why I keep coming back here. It is my way of processing it and it works for me, emotions and all. It is nice to have the people here to lean on.

 

[ktsmom]

Aslo - we started the Vest, TOBI, and Pulmozyme right away because Katy cultured PA on her first cf doc visit. She was 3 years and 3 months old and weighed 30 pounds when she was dx. She doesn't have any other respiratory problems and has had 3 clear cultures since. But we still do these treatments because our doc is very proactive and believes in these things as preventative measures. I agree but I'm just the mom <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ktsmom]

Aslo - we started the Vest, TOBI, and Pulmozyme right away because Katy cultured PA on her first cf doc visit. She was 3 years and 3 months old and weighed 30 pounds when she was dx. She doesn't have any other respiratory problems and has had 3 clear cultures since. But we still do these treatments because our doc is very proactive and believes in these things as preventative measures. I agree but I'm just the mom <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ktsmom]

Aslo - we started the Vest, TOBI, and Pulmozyme right away because Katy cultured PA on her first cf doc visit. She was 3 years and 3 months old and weighed 30 pounds when she was dx. She doesn't have any other respiratory problems and has had 3 clear cultures since. But we still do these treatments because our doc is very proactive and believes in these things as preventative measures. I agree but I'm just the mom <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[chattyfamily]

Thanks again for all the responses. Great to have people who know what I am going through.
Dana- what do you think they will do for Porter for just culturing Staph? I guess i will find out tomorrow morning, but tonight I am speculating...
Jada - interesting that our kids have the same mutations. I was looking for a site that maybe listed common symptoms related to specific mutations. Do you know if there have been any work done on that?

 

[chattyfamily]

Thanks again for all the responses. Great to have people who know what I am going through.
Dana- what do you think they will do for Porter for just culturing Staph? I guess i will find out tomorrow morning, but tonight I am speculating...
Jada - interesting that our kids have the same mutations. I was looking for a site that maybe listed common symptoms related to specific mutations. Do you know if there have been any work done on that?

 

[chattyfamily]

Thanks again for all the responses. Great to have people who know what I am going through.
Dana- what do you think they will do for Porter for just culturing Staph? I guess i will find out tomorrow morning, but tonight I am speculating...
Jada - interesting that our kids have the same mutations. I was looking for a site that maybe listed common symptoms related to specific mutations. Do you know if there have been any work done on that?

 

[zoe4life]

Melissa,

There is a lot of speculation related to gene mutations. You can google the genes and come up with a lot of stuff. One of the things though is the classes of the mutations. Class 1 being the most severe symptoms, going down from there to class 5 (which normally shows no symptoms).
The cf docs don't even know all there is to know about genes. It is debated about constantly.
There are several books out there about cf. You should try to read the informational ones, my clinic gave us a few from the CFF. They were extremely helpful.
Take care,

 

[zoe4life]

Melissa,

There is a lot of speculation related to gene mutations. You can google the genes and come up with a lot of stuff. One of the things though is the classes of the mutations. Class 1 being the most severe symptoms, going down from there to class 5 (which normally shows no symptoms).
The cf docs don't even know all there is to know about genes. It is debated about constantly.
There are several books out there about cf. You should try to read the informational ones, my clinic gave us a few from the CFF. They were extremely helpful.
Take care,

 

[zoe4life]

Melissa,

There is a lot of speculation related to gene mutations. You can google the genes and come up with a lot of stuff. One of the things though is the classes of the mutations. Class 1 being the most severe symptoms, going down from there to class 5 (which normally shows no symptoms).
The cf docs don't even know all there is to know about genes. It is debated about constantly.
There are several books out there about cf. You should try to read the informational ones, my clinic gave us a few from the CFF. They were extremely helpful.
Take care,

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>chattyfamily</b></i>
that our kids have the same mutations. I was looking for a site that maybe listed common symptoms related to specific mutations. Do you know if there have been any work done on that?</end quote></div>

You will find many people on this site with the same mutations - and their clinical outcomes are drastically different. Some will need lung transplants in their late teens and others are nearing 40 and are still going strong.

I wouldn't rely on gene mutations - I think it breeds unrealistic expectations

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>chattyfamily</b></i>
that our kids have the same mutations. I was looking for a site that maybe listed common symptoms related to specific mutations. Do you know if there have been any work done on that?</end quote></div>

You will find many people on this site with the same mutations - and their clinical outcomes are drastically different. Some will need lung transplants in their late teens and others are nearing 40 and are still going strong.

I wouldn't rely on gene mutations - I think it breeds unrealistic expectations

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>chattyfamily</b></i>
that our kids have the same mutations. I was looking for a site that maybe listed common symptoms related to specific mutations. Do you know if there have been any work done on that?</end quote></div>

You will find many people on this site with the same mutations - and their clinical outcomes are drastically different. Some will need lung transplants in their late teens and others are nearing 40 and are still going strong.

I wouldn't rely on gene mutations - I think it breeds unrealistic expectations

 

[Foody]

One thing we have learned since our son was diagnosed at 3 1/2 months is not to judge our experience by what others may report or do in terms of therapy. It was hard in the beginning to take it all in and of course you want the best for your child. The variability in disease progression is perhaps the most difficult thing in my opinion to get your arms around. I just try to be aware, research all avenues (natural and traditional), ask tons of questions, and ultimately really know my child and what his unique needs are.

From the traditional side, we are basically on enzymes, vitamins, and vest therapy 2x daily. He was on an antiacid until about 18 months due to reflux and did take a liver medicine until about 1 year of age. Our clinic does not recommend doing CPT on reflux infants due to increase chance of lung damage. For some reason, reflux/acidity changes around 2 years old and often children can go off antacids (this was our experience). This is when we started. This is preventative - keeping mucus thin and moving and out of the lungs is very important in lung care. He has not taken an antibiotic since he was on TOBI at 15 months for PA. of which he has been free since then. Cultures staph on cultures, but last one was clear. This is not a concern -- culture are a guideline/tool, but not a perfect science.

In addition to a (mostly) organic diet of (mostly) whole foods, we also provide him with supplements like DHA (omega 3), tumeric, GSH (glutathione), and probiotics (acidophilus) for gut health and to help keep inflammation at bay. We stay away from white sugar and white flour as much as possible and when he needed it, we added calories using other methods (rather than their suggestion of giving anything and using OTC supplement drinks which are loaded with sugar/corn syrup/part. hydrog fats).

He is very healthy and vibrant, is rarely ill, keeps weight on well, and is just like any other toddler (a roller coaster of fun and emotion ;-) Mommy care is most important in all of this. Take time to talk, cry, get angry, appreciate each day as it comes, do things you enjoy, take breaks, talk some more... Taking this all in is tough and we all understand here!

Much health and happiness,

 

[Foody]

One thing we have learned since our son was diagnosed at 3 1/2 months is not to judge our experience by what others may report or do in terms of therapy. It was hard in the beginning to take it all in and of course you want the best for your child. The variability in disease progression is perhaps the most difficult thing in my opinion to get your arms around. I just try to be aware, research all avenues (natural and traditional), ask tons of questions, and ultimately really know my child and what his unique needs are.

From the traditional side, we are basically on enzymes, vitamins, and vest therapy 2x daily. He was on an antiacid until about 18 months due to reflux and did take a liver medicine until about 1 year of age. Our clinic does not recommend doing CPT on reflux infants due to increase chance of lung damage. For some reason, reflux/acidity changes around 2 years old and often children can go off antacids (this was our experience). This is when we started. This is preventative - keeping mucus thin and moving and out of the lungs is very important in lung care. He has not taken an antibiotic since he was on TOBI at 15 months for PA. of which he has been free since then. Cultures staph on cultures, but last one was clear. This is not a concern -- culture are a guideline/tool, but not a perfect science.

In addition to a (mostly) organic diet of (mostly) whole foods, we also provide him with supplements like DHA (omega 3), tumeric, GSH (glutathione), and probiotics (acidophilus) for gut health and to help keep inflammation at bay. We stay away from white sugar and white flour as much as possible and when he needed it, we added calories using other methods (rather than their suggestion of giving anything and using OTC supplement drinks which are loaded with sugar/corn syrup/part. hydrog fats).

He is very healthy and vibrant, is rarely ill, keeps weight on well, and is just like any other toddler (a roller coaster of fun and emotion ;-) Mommy care is most important in all of this. Take time to talk, cry, get angry, appreciate each day as it comes, do things you enjoy, take breaks, talk some more... Taking this all in is tough and we all understand here!

Much health and happiness,

 

[Foody]

One thing we have learned since our son was diagnosed at 3 1/2 months is not to judge our experience by what others may report or do in terms of therapy. It was hard in the beginning to take it all in and of course you want the best for your child. The variability in disease progression is perhaps the most difficult thing in my opinion to get your arms around. I just try to be aware, research all avenues (natural and traditional), ask tons of questions, and ultimately really know my child and what his unique needs are.

From the traditional side, we are basically on enzymes, vitamins, and vest therapy 2x daily. He was on an antiacid until about 18 months due to reflux and did take a liver medicine until about 1 year of age. Our clinic does not recommend doing CPT on reflux infants due to increase chance of lung damage. For some reason, reflux/acidity changes around 2 years old and often children can go off antacids (this was our experience). This is when we started. This is preventative - keeping mucus thin and moving and out of the lungs is very important in lung care. He has not taken an antibiotic since he was on TOBI at 15 months for PA. of which he has been free since then. Cultures staph on cultures, but last one was clear. This is not a concern -- culture are a guideline/tool, but not a perfect science.

In addition to a (mostly) organic diet of (mostly) whole foods, we also provide him with supplements like DHA (omega 3), tumeric, GSH (glutathione), and probiotics (acidophilus) for gut health and to help keep inflammation at bay. We stay away from white sugar and white flour as much as possible and when he needed it, we added calories using other methods (rather than their suggestion of giving anything and using OTC supplement drinks which are loaded with sugar/corn syrup/part. hydrog fats).

He is very healthy and vibrant, is rarely ill, keeps weight on well, and is just like any other toddler (a roller coaster of fun and emotion ;-) Mommy care is most important in all of this. Take time to talk, cry, get angry, appreciate each day as it comes, do things you enjoy, take breaks, talk some more... Taking this all in is tough and we all understand here!

Much health and happiness,

 

[mneville]

Hi Melissa. Our now two year old was diagnosed at 8 days old due to NJ newborn screening- he is a Double Delta. I second everything that was said here - it is a huge learning process but it gets easier. I would start by keeping a binder for insurance bills ect..I also have a binder for all his medical info- culture reports, lung tests ect...I was so overwhelmed the first year that I forgot about these things and they are important.

Aidan started CPT at 11 days old with Xopenex treatments. He got the VEST at 18 months and wears it an hour a day. He really has grown to like it!He also does Pulmozyne and takes Creon and vitamins. Aidan will be 3 in Sept and at his last visit he was 37 pounds!! He is doing really well. Just a typical crazy two year old with a few extra meds..

Megan