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[MargoB]

My grandson is 13 months old and in the hospital to find out why he is not gaining weight. He has cystic fibrosis and I wonder if any one has any ideas what they can do or what they are looking for to help this situation. I understand this is part of the disease. He is not growing in length either. Thank you am worried.

Margo B

 

[MargoB]

My grandson is 13 months old and in the hospital to find out why he is not gaining weight. He has cystic fibrosis and I wonder if any one has any ideas what they can do or what they are looking for to help this situation. I understand this is part of the disease. He is not growing in length either. Thank you am worried.

Margo B

 

[Seana30]

<P><FONT color=#008000 size=3><STRONG>Margo,Welcome to the group!My 13 year old daughter has major weight issues also.  You just have to take it day by day, and try to get as much advise as possible.It is really late so I will try to post later with some of the things we try to do to help Courtney's weight.Seana</STRONG></FONT></P>

 

[Seana30]

<P><FONT color=#008000 size=3><STRONG>Margo,Welcome to the group!My 13 year old daughter has major weight issues also.  You just have to take it day by day, and try to get as much advise as possible.It is really late so I will try to post later with some of the things we try to do to help Courtney's weight.Seana</STRONG></FONT></P>

 

[anonymous]

Thanks for answering my post. He is on enzimes and just started eating foods. It is so hard to see him so small.

Have a great day.

Margo

 

[anonymous]

Thanks for answering my post. He is on enzimes and just started eating foods. It is so hard to see him so small.

Have a great day.

Margo

 

[Cheryl2424]

Margo,
I also have a 13 year old with CF. Weight gain has ALWAYS been an issue with her. We have her on the highest dose of digestive enzymes that she can take for her weight, We've also had to switch between companies that make enzymes to get the right balance. We have Danielle on a high calorie diet that includes lots and lots of dairy products with fat. We use real butter, whole milk, half and half in her cereal. I cook with butter and make things like mashed potatoes with Half and Half. We have her on Carnation Instant Breakfast and she gets things like cheese and crackers a lot. I don't know if your grandson is still on formula, but if he is we found that pre-digested stuff worked best for putting on weight-the stuff we used was Nutramagen (sp).

 

[Cheryl2424]

Margo,
I also have a 13 year old with CF. Weight gain has ALWAYS been an issue with her. We have her on the highest dose of digestive enzymes that she can take for her weight, We've also had to switch between companies that make enzymes to get the right balance. We have Danielle on a high calorie diet that includes lots and lots of dairy products with fat. We use real butter, whole milk, half and half in her cereal. I cook with butter and make things like mashed potatoes with Half and Half. We have her on Carnation Instant Breakfast and she gets things like cheese and crackers a lot. I don't know if your grandson is still on formula, but if he is we found that pre-digested stuff worked best for putting on weight-the stuff we used was Nutramagen (sp).

 

[anonymous]

Is he in a hospital with a CF clinic and CF specialists? It makes a difference working with CF experts since they know much more about CF treatments and deal with this issue all the time. "Why" he is underweight is because he has CF - the thing they need to do is find the right combination of foods and medicines he needs to get the nutritional value out of his food. Is he taking antacids, such as Zantac, in addition to the enzymes? If not, ask his Drs.- ours says that without the zantac, the enzymes won't work right.

I tend to worry more about weight than height. There is a separate growth chart for weight versus height and my son always ranked higher on that one than on the individual charts for weight or height.

 

[anonymous]

Is he in a hospital with a CF clinic and CF specialists? It makes a difference working with CF experts since they know much more about CF treatments and deal with this issue all the time. "Why" he is underweight is because he has CF - the thing they need to do is find the right combination of foods and medicines he needs to get the nutritional value out of his food. Is he taking antacids, such as Zantac, in addition to the enzymes? If not, ask his Drs.- ours says that without the zantac, the enzymes won't work right.

I tend to worry more about weight than height. There is a separate growth chart for weight versus height and my son always ranked higher on that one than on the individual charts for weight or height.

 

[anonymous]

We kept DS on formula until he was about a year and a half 'cuz he wasn't too keen on eating table food. He's still a picky eater. Anyway, the dieticians at the hospital gave us a recipe for higher calorie formula -- more powder to water. Then as he got older, his doctor told us to add an ounce of cream to it -- that adds about 100 calories.

DS loved yogurt at that time and I found a whole milk one made by stonefield farms, they also make yobaby. Otherwise I'd find the one with the highest caloric content and add a dash of cream. He had texture issues and hated ground meat, but loved stage 2 mac & cheese and babyfood meat, so I'd add some salt and butter to those. He also liked those individual microwavable soups -- bean, brocolli cheese and stew. I'd chop up the chunks and he'd go to town.

He's still a picky eater, but he loves spagettios, hamburgers & fries, pancakes... And we always give him carnation instant breakfast made with whole milk and cream with every meal.

 

[anonymous]

We kept DS on formula until he was about a year and a half 'cuz he wasn't too keen on eating table food. He's still a picky eater. Anyway, the dieticians at the hospital gave us a recipe for higher calorie formula -- more powder to water. Then as he got older, his doctor told us to add an ounce of cream to it -- that adds about 100 calories.

DS loved yogurt at that time and I found a whole milk one made by stonefield farms, they also make yobaby. Otherwise I'd find the one with the highest caloric content and add a dash of cream. He had texture issues and hated ground meat, but loved stage 2 mac & cheese and babyfood meat, so I'd add some salt and butter to those. He also liked those individual microwavable soups -- bean, brocolli cheese and stew. I'd chop up the chunks and he'd go to town.

He's still a picky eater, but he loves spagettios, hamburgers & fries, pancakes... And we always give him carnation instant breakfast made with whole milk and cream with every meal.

 

[skh]

Hi Margo - you came to the right place to get ideas and support. When my daughter was young she used to eat all day long and not gain anything. Once she started taking enzymes that really made a difference for her. She eats alot of cheese and loves ice cream and we don't limit her on these.

I hope you will see a difference in his weight gain now that he is on solid foods. Since you're the Grandma you will probably just have to treat him to lots of ice cream (Grandma's seem to get by with doing that!).

Good luck.

Sue

 

[skh]

Hi Margo - you came to the right place to get ideas and support. When my daughter was young she used to eat all day long and not gain anything. Once she started taking enzymes that really made a difference for her. She eats alot of cheese and loves ice cream and we don't limit her on these.

I hope you will see a difference in his weight gain now that he is on solid foods. Since you're the Grandma you will probably just have to treat him to lots of ice cream (Grandma's seem to get by with doing that!).

Good luck.

Sue

 

[anonymous]

Hello Sue,

Thanks for your reply. They are changing his medications to see if that will help. He is in the CF hospital in San Francisco. He has been constipated so they think some of his medicine might counterdict the enzimes. Poor little guy second time in the hospital in a year.

Margo

 

[anonymous]

Hello Sue,

Thanks for your reply. They are changing his medications to see if that will help. He is in the CF hospital in San Francisco. He has been constipated so they think some of his medicine might counterdict the enzimes. Poor little guy second time in the hospital in a year.

Margo

 

[skh]

You're welcome, Margo. I know how helpless my mother felt when we found out about my daughter having CF. Right after we are done at a CF appointment we have to call Grandma and let her know all the results. I don't know what my daughter or myself would do without her. I think it's awesome that you are posting on this board and sharing with us. Everyone we love is affected by what happens to us - sometimes I tend to forget that or it gets pushed to the back.

Take care and let us know your grandson is doing.

Sue

 

[skh]

You're welcome, Margo. I know how helpless my mother felt when we found out about my daughter having CF. Right after we are done at a CF appointment we have to call Grandma and let her know all the results. I don't know what my daughter or myself would do without her. I think it's awesome that you are posting on this board and sharing with us. Everyone we love is affected by what happens to us - sometimes I tend to forget that or it gets pushed to the back.

Take care and let us know your grandson is doing.

Sue