Grandson newly diagnosed @ 21 months of age -- military family.

[masonjar]

My 21 month old grandson was recently diagnosed with CF. For him it is intestinal and his pancreas is not working as it should. I consider myself an educated person, but wow -- don't know much about this at all. My daughter is a Marine wife & they currently live in NJ and we (grandparents) live in Washington State. Currently the little one is on a starch, no protein diet.

Questions: Any other military family out there? Grandparents? Where can I begin to find information.

 

[masonjar]

My 21 month old grandson was recently diagnosed with CF. For him it is intestinal and his pancreas is not working as it should. I consider myself an educated person, but wow -- don't know much about this at all. My daughter is a Marine wife & they currently live in NJ and we (grandparents) live in Washington State. Currently the little one is on a starch, no protein diet.

Questions: Any other military family out there? Grandparents? Where can I begin to find information.

 

[masonjar]

My 21 month old grandson was recently diagnosed with CF. For him it is intestinal and his pancreas is not working as it should. I consider myself an educated person, but wow -- don't know much about this at all. My daughter is a Marine wife & they currently live in NJ and we (grandparents) live in Washington State. Currently the little one is on a starch, no protein diet.
<br />
<br />Questions: Any other military family out there? Grandparents? Where can I begin to find information.

 

[kaylasdad]

Let me start by saying i'm sorry for what you are going through.
I know its devastating and scary right know,but it will get easier.
I know what you are going through because my 2 year old daughter was diagnosed when she was 3 months old.It was the worst news of my life when they told us she has cystic fibrosis.

My daughter pancreas is not working and she takes enzymes before she eats to help her obsorb fats to help her gain weight.
I promise it will get easier.

and as far as not knowing anything about cf you came to the right place. There are alot of great people on this site...and on matter what question you have someone will able to answer it.
And there are no stupid ones ask anything that it on your mind.

O ya welcome to this site<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[kaylasdad]

Let me start by saying i'm sorry for what you are going through.
I know its devastating and scary right know,but it will get easier.
I know what you are going through because my 2 year old daughter was diagnosed when she was 3 months old.It was the worst news of my life when they told us she has cystic fibrosis.

My daughter pancreas is not working and she takes enzymes before she eats to help her obsorb fats to help her gain weight.
I promise it will get easier.

and as far as not knowing anything about cf you came to the right place. There are alot of great people on this site...and on matter what question you have someone will able to answer it.
And there are no stupid ones ask anything that it on your mind.

O ya welcome to this site<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[kaylasdad]

Let me start by saying i'm sorry for what you are going through.
<br />I know its devastating and scary right know,but it will get easier.
<br />I know what you are going through because my 2 year old daughter was diagnosed when she was 3 months old.It was the worst news of my life when they told us she has cystic fibrosis.
<br />
<br />My daughter pancreas is not working and she takes enzymes before she eats to help her obsorb fats to help her gain weight.
<br />I promise it will get easier.
<br />
<br />and as far as not knowing anything about cf you came to the right place. There are alot of great people on this site...and on matter what question you have someone will able to answer it.
<br />And there are no stupid ones ask anything that it on your mind.
<br />
<br />O ya welcome to this site<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ktsmom]

Hello and welcome. I am sorry for the diagnosis - it can be a tough and overwhelming time. I am glad you have come here for information and support. As I'm sure you have discovered, there is lots out on the internet about cystic fibrosis. Some of it is out-of-date and even wrong. But please ask questions here. You will get plenty of feedback and advice.

Treatment for CF can vary because CF presents differently in each individual. And although there are "standard" treatment protocols, some docs are more agressive in treatment recommendations than others. For example, our daughter was diagnosed at age 3 based mainly on digestive issues. But our doc believes in treating the lungs on a very proactive basis so we do a full regimen of breathing treatments and chest physical therapy.

And then there are the opinions from well meaning strangers like myself - I happen to have a question about why your grandson would be on a starch diet. That's a new one for me. With proper digestive enzymes, I think most CF'ers can and should have fat and protien in their diets.

Focus first on the symptoms that led to your grandson's diagnosis and learn about the clinical reasons that CF causes those sypmtoms. CFF.org, the NIH, and the big university hospitals will have reliable information. Then research the recommended treatments for those symptoms and make sure your grandson's doctor is up-to-speed to your satisfaction. This is a disease that demands a proactive patient so arm yourself with information and start asking questions.

Good luck!

 

[ktsmom]

Hello and welcome. I am sorry for the diagnosis - it can be a tough and overwhelming time. I am glad you have come here for information and support. As I'm sure you have discovered, there is lots out on the internet about cystic fibrosis. Some of it is out-of-date and even wrong. But please ask questions here. You will get plenty of feedback and advice.

Treatment for CF can vary because CF presents differently in each individual. And although there are "standard" treatment protocols, some docs are more agressive in treatment recommendations than others. For example, our daughter was diagnosed at age 3 based mainly on digestive issues. But our doc believes in treating the lungs on a very proactive basis so we do a full regimen of breathing treatments and chest physical therapy.

And then there are the opinions from well meaning strangers like myself - I happen to have a question about why your grandson would be on a starch diet. That's a new one for me. With proper digestive enzymes, I think most CF'ers can and should have fat and protien in their diets.

Focus first on the symptoms that led to your grandson's diagnosis and learn about the clinical reasons that CF causes those sypmtoms. CFF.org, the NIH, and the big university hospitals will have reliable information. Then research the recommended treatments for those symptoms and make sure your grandson's doctor is up-to-speed to your satisfaction. This is a disease that demands a proactive patient so arm yourself with information and start asking questions.

Good luck!

 

[ktsmom]

Hello and welcome. I am sorry for the diagnosis - it can be a tough and overwhelming time. I am glad you have come here for information and support. As I'm sure you have discovered, there is lots out on the internet about cystic fibrosis. Some of it is out-of-date and even wrong. But please ask questions here. You will get plenty of feedback and advice.
<br />
<br />Treatment for CF can vary because CF presents differently in each individual. And although there are "standard" treatment protocols, some docs are more agressive in treatment recommendations than others. For example, our daughter was diagnosed at age 3 based mainly on digestive issues. But our doc believes in treating the lungs on a very proactive basis so we do a full regimen of breathing treatments and chest physical therapy.
<br />
<br />And then there are the opinions from well meaning strangers like myself - I happen to have a question about why your grandson would be on a starch diet. That's a new one for me. With proper digestive enzymes, I think most CF'ers can and should have fat and protien in their diets.
<br />
<br />Focus first on the symptoms that led to your grandson's diagnosis and learn about the clinical reasons that CF causes those sypmtoms. CFF.org, the NIH, and the big university hospitals will have reliable information. Then research the recommended treatments for those symptoms and make sure your grandson's doctor is up-to-speed to your satisfaction. This is a disease that demands a proactive patient so arm yourself with information and start asking questions.
<br />
<br />Good luck!

 

[JORDYSMOM]

Welcome. I know we have other military families here. Hopefully they will join in soon, and offer their experiences.

I couldn't say anything more or any better than Dana (ktsmom) said. I am also curious about the lack of protein in the diet.

Keep us posted on your grandson.

Stacey

 

[JORDYSMOM]

Welcome. I know we have other military families here. Hopefully they will join in soon, and offer their experiences.

I couldn't say anything more or any better than Dana (ktsmom) said. I am also curious about the lack of protein in the diet.

Keep us posted on your grandson.

Stacey

 

[JORDYSMOM]

Welcome. I know we have other military families here. Hopefully they will join in soon, and offer their experiences.
<br />
<br />I couldn't say anything more or any better than Dana (ktsmom) said. I am also curious about the lack of protein in the diet.
<br />
<br />Keep us posted on your grandson.
<br />
<br />Stacey

 

[ToriMom]

Welcome Suzy!
You have come to the right place for information and support. Nobody knows this disease as well as those who are dealing with it. We are a military family too! My husband is active duty Air Force--nearly 15 years now. Our daughter was diagnosed at 6 months due to failure to thrive, (she was only 11 pounds) and she also had a cough that would not go away. She is nine now. Her digestive issues (lack of ability to digest fats and proteins) were pretty bad. At 20 months of age we put her on a G-tube, which she still has today. This does not mean Mason will need one...this was what my daughter needed to get her to gain any weight. At that time she was very thin (negative 10th percentile) and the worst part was she constantly cried out in pain from cramps/gas/obstructions. We have come to love her G-tube because it took away that pain, and now she is a normal body weight.

Do the Marines have the Exceptional Family Member Program? Your daughter should look into enrolling if they do. Different branches of service will have diferent names for things, but basically they will code their service file as having a child with special needs so they can get some support. Mason will need a CF care center or satellite center so the EFMP will help get them near one and then stationed near one for the rest of their enlistment. This doesn't mean that they will never have to move again. It just means that when they move it will be to a place where they have a hospital for Mason.

Also, we go through a lot of medical supplies and presciptions for our daughter, and the military is <b>incredible</b> in this regard. It has factored in to my husband staying active duty because CF needs the best medical insurance you can get your hands on. We pay very little out of pocket costs for her medicine and doctor visits...nearly nothing. Hospitalizations are totally covered and the surgeries she has had...also totally covered with no out-of-pocket costs.

I too am sorry to hear of the diagnosis. It is a heartbreaking one, but your family is not alone. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hugs,
Michelle, mom to Tori, 9 w/CF and G-tube, avid reader; and Trace, 13, Autistic, curious-minded

 

[ToriMom]

Welcome Suzy!
You have come to the right place for information and support. Nobody knows this disease as well as those who are dealing with it. We are a military family too! My husband is active duty Air Force--nearly 15 years now. Our daughter was diagnosed at 6 months due to failure to thrive, (she was only 11 pounds) and she also had a cough that would not go away. She is nine now. Her digestive issues (lack of ability to digest fats and proteins) were pretty bad. At 20 months of age we put her on a G-tube, which she still has today. This does not mean Mason will need one...this was what my daughter needed to get her to gain any weight. At that time she was very thin (negative 10th percentile) and the worst part was she constantly cried out in pain from cramps/gas/obstructions. We have come to love her G-tube because it took away that pain, and now she is a normal body weight.

Do the Marines have the Exceptional Family Member Program? Your daughter should look into enrolling if they do. Different branches of service will have diferent names for things, but basically they will code their service file as having a child with special needs so they can get some support. Mason will need a CF care center or satellite center so the EFMP will help get them near one and then stationed near one for the rest of their enlistment. This doesn't mean that they will never have to move again. It just means that when they move it will be to a place where they have a hospital for Mason.

Also, we go through a lot of medical supplies and presciptions for our daughter, and the military is <b>incredible</b> in this regard. It has factored in to my husband staying active duty because CF needs the best medical insurance you can get your hands on. We pay very little out of pocket costs for her medicine and doctor visits...nearly nothing. Hospitalizations are totally covered and the surgeries she has had...also totally covered with no out-of-pocket costs.

I too am sorry to hear of the diagnosis. It is a heartbreaking one, but your family is not alone. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hugs,
Michelle, mom to Tori, 9 w/CF and G-tube, avid reader; and Trace, 13, Autistic, curious-minded

 

[ToriMom]

Welcome Suzy!
<br /> You have come to the right place for information and support. Nobody knows this disease as well as those who are dealing with it. We are a military family too! My husband is active duty Air Force--nearly 15 years now. Our daughter was diagnosed at 6 months due to failure to thrive, (she was only 11 pounds) and she also had a cough that would not go away. She is nine now. Her digestive issues (lack of ability to digest fats and proteins) were pretty bad. At 20 months of age we put her on a G-tube, which she still has today. This does not mean Mason will need one...this was what my daughter needed to get her to gain any weight. At that time she was very thin (negative 10th percentile) and the worst part was she constantly cried out in pain from cramps/gas/obstructions. We have come to love her G-tube because it took away that pain, and now she is a normal body weight.
<br />
<br /> Do the Marines have the Exceptional Family Member Program? Your daughter should look into enrolling if they do. Different branches of service will have diferent names for things, but basically they will code their service file as having a child with special needs so they can get some support. Mason will need a CF care center or satellite center so the EFMP will help get them near one and then stationed near one for the rest of their enlistment. This doesn't mean that they will never have to move again. It just means that when they move it will be to a place where they have a hospital for Mason.
<br />
<br />Also, we go through a lot of medical supplies and presciptions for our daughter, and the military is <b>incredible</b> in this regard. It has factored in to my husband staying active duty because CF needs the best medical insurance you can get your hands on. We pay very little out of pocket costs for her medicine and doctor visits...nearly nothing. Hospitalizations are totally covered and the surgeries she has had...also totally covered with no out-of-pocket costs.
<br />
<br />I too am sorry to hear of the diagnosis. It is a heartbreaking one, but your family is not alone. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />Hugs,
<br />Michelle, mom to Tori, 9 w/CF and G-tube, avid reader; and Trace, 13, Autistic, curious-minded

 

[Treewife]

Hi. I am a Navy Mom. We are in Bethesda - probably the nearest military CF center to you. Our Nurse here at the center is awesome. I will pm you more info.

Hugs.

 

[Treewife]

Hi. I am a Navy Mom. We are in Bethesda - probably the nearest military CF center to you. Our Nurse here at the center is awesome. I will pm you more info.

Hugs.

 

[Treewife]

Hi. I am a Navy Mom. We are in Bethesda - probably the nearest military CF center to you. Our Nurse here at the center is awesome. I will pm you more info.
<br />
<br />Hugs.

 

[masonjar]

Thank you everyone for all of your kindness and words of compassion. Scratch the starch diet. He is on an all you can eat diet and when my daughter is learning to give him his enzymes in any way shape or form.

I am continuing to read as much as I can. Any books out there that I should be reading?

 

[masonjar]

Thank you everyone for all of your kindness and words of compassion. Scratch the starch diet. He is on an all you can eat diet and when my daughter is learning to give him his enzymes in any way shape or form.

I am continuing to read as much as I can. Any books out there that I should be reading?