Sick of defending myself

folione

New member
My spouse and I have been in a similar situation from time to time, though I would not describe it as the Dr/Nutritionist thinking we're in denial; more like they thought we were making irrelevant arguments. I think sometimes medical staff forget that you don't have to be a medical professional to have valid and wise thoughts to contribute to the discussion about your child's health.

My son w/CF is almost 4 and is around the 25-50% mark now but hung around the bottom of the chart quite awhile at your child's age. I was always the smallest person in my class as a child and at almost 50, my BMI is at the bottom of the normal range - so I've made the complaint that maybe hitting 50% or more just is not in the genes. The Dr. response was that they set 50%+ as a goal because bigger is better with CF, but that they really do understand that not everyone can get there for whatever reasons.

At one clinic visit, the nutritionist almost made my wife cry and feel like she was a failure because our boy had lost a tiny bit of weight (which I still think was due to an inaccurate weight the time before). Anyway, I called the nutritionist the next day and let her know that she needed to improve her bedside manner or she'll find us requesting that she not be present. She was a bit defensive at first, but after chatting for awhile I think she came to understand that we are doing our best and not slacking off.

You're not out of line for being annoyed with the situation and not alone. I guess the point of my story is that sometimes our kid's CF teams need a kick in the pants to remind them that WE are thinking about our kids best interests every single day and our opinions need to be respected.
 
M

Mommafirst

Guest
Folione, you said it so well it makes me have tears in my eyes to realize you all get it and understand. Its so frustrating to not be listened to!!!! Thank you!!!
 
M

Mommafirst

Guest
Folione, you said it so well it makes me have tears in my eyes to realize you all get it and understand. Its so frustrating to not be listened to!!!! Thank you!!!
 
M

Mommafirst

Guest
Folione, you said it so well it makes me have tears in my eyes to realize you all get it and understand. Its so frustrating to not be listened to!!!! Thank you!!!
 

Emily65Roses

New member
You're her mother. You know her best. If someone in the medical profession is giving you major attitude, feel free to chock it up to "I have a degree so I know everything, and you don't know sh*t even though you live with it." I HATE that attitude, but you can see it often.

Mind you... she is right in that it's more important for the CFer to have some extra weight than your healthy kids. But if you're doing everything you can, that's the best anyone can ask of you.
 

Emily65Roses

New member
You're her mother. You know her best. If someone in the medical profession is giving you major attitude, feel free to chock it up to "I have a degree so I know everything, and you don't know sh*t even though you live with it." I HATE that attitude, but you can see it often.

Mind you... she is right in that it's more important for the CFer to have some extra weight than your healthy kids. But if you're doing everything you can, that's the best anyone can ask of you.
 

Emily65Roses

New member
You're her mother. You know her best. If someone in the medical profession is giving you major attitude, feel free to chock it up to "I have a degree so I know everything, and you don't know sh*t even though you live with it." I HATE that attitude, but you can see it often.

Mind you... she is right in that it's more important for the CFer to have some extra weight than your healthy kids. But if you're doing everything you can, that's the best anyone can ask of you.
 

cosmokramer

New member
I totally understand how you feel. My daughter is PS right now and doesn't have any lung involvement. They push the pediasure and we do the vest with her everyday, twice a day. We go through a can of pediasure a day. Sometimes two days. I know she is eating and she is very active. I can't force her to eat and be less active. So she is how she is, I know that I am doing everything I can and that is what really matters. I just stand my ground at the drs office and explain what she does eat and how active she is. They always make us feel that we could do more. We try.

Believe in your parenting skills. I am sure you are doing a great job.
 

cosmokramer

New member
I totally understand how you feel. My daughter is PS right now and doesn't have any lung involvement. They push the pediasure and we do the vest with her everyday, twice a day. We go through a can of pediasure a day. Sometimes two days. I know she is eating and she is very active. I can't force her to eat and be less active. So she is how she is, I know that I am doing everything I can and that is what really matters. I just stand my ground at the drs office and explain what she does eat and how active she is. They always make us feel that we could do more. We try.

Believe in your parenting skills. I am sure you are doing a great job.
 

cosmokramer

New member
I totally understand how you feel. My daughter is PS right now and doesn't have any lung involvement. They push the pediasure and we do the vest with her everyday, twice a day. We go through a can of pediasure a day. Sometimes two days. I know she is eating and she is very active. I can't force her to eat and be less active. So she is how she is, I know that I am doing everything I can and that is what really matters. I just stand my ground at the drs office and explain what she does eat and how active she is. They always make us feel that we could do more. We try.

Believe in your parenting skills. I am sure you are doing a great job.
 

Allie

New member
Ahava was such a little peanut, we had her tested for CF. She's just starting to catch up now. She was just little. And I agree, have them look at BMI also. Ry was a little guy in all ways, although some of that WAS due to CF, and as such never weighed more than I think 130 pounds. So sometimes things are what they are.

If Pediasure is causing issues, I HIGHLY recommend carnation instant breakfast with ice cream, or milk, or both. Doesn't taste mediciney, the powder won't spoil on you, worked well for us. Best of luck.
 

Allie

New member
Ahava was such a little peanut, we had her tested for CF. She's just starting to catch up now. She was just little. And I agree, have them look at BMI also. Ry was a little guy in all ways, although some of that WAS due to CF, and as such never weighed more than I think 130 pounds. So sometimes things are what they are.

If Pediasure is causing issues, I HIGHLY recommend carnation instant breakfast with ice cream, or milk, or both. Doesn't taste mediciney, the powder won't spoil on you, worked well for us. Best of luck.
 

Allie

New member
Ahava was such a little peanut, we had her tested for CF. She's just starting to catch up now. She was just little. And I agree, have them look at BMI also. Ry was a little guy in all ways, although some of that WAS due to CF, and as such never weighed more than I think 130 pounds. So sometimes things are what they are.

If Pediasure is causing issues, I HIGHLY recommend carnation instant breakfast with ice cream, or milk, or both. Doesn't taste mediciney, the powder won't spoil on you, worked well for us. Best of luck.
 

Ratatosk

Administrator
Staff member
When DS was first diagnosed, we had a dietician with major attitude. Her stepson had CF.

Main issue was with pregistimil. DS had major bottle aversion with it -- we came toward him with the bottle and he'd try to escape, clamp his mouth shut, screamed. They wanted us to force feed it to him. Move his jaw, jam the bottle in. Dietician told us that newborns didn't have developed tastebuds and wouldn't know any better. Next breath she hands me DS's adeks vitamins and said, most babies don't like the taste.

We KNEW he'd eat regular formula -- argued and argued with her about it. Before we knew he had ME, he gulped down a bottle of infamil. She refused to budge. Told us that regular formula would be bad for him. Wouldn't explain why. Then she and the other nurse started talking about us and DS, while we were in the room. Said DS was slow, had a poor suck reflex and they should get a therapist to come down to work with him... I walked up to the mini-fridge in the NICU and poured myself a shot of his formula -- tasted like vomit & the way road kill smells. Demanded to talk to a doctor to get this changed -- he walked in the door and said "feed the kid what he wants. Kinda silly if he's not going to eat it".

Never saw the dietician again. She refused to deal with us. Amazing though that DS started eating, gaining weight, was released from the hospital shortly afterwards...
 

Ratatosk

Administrator
Staff member
When DS was first diagnosed, we had a dietician with major attitude. Her stepson had CF.

Main issue was with pregistimil. DS had major bottle aversion with it -- we came toward him with the bottle and he'd try to escape, clamp his mouth shut, screamed. They wanted us to force feed it to him. Move his jaw, jam the bottle in. Dietician told us that newborns didn't have developed tastebuds and wouldn't know any better. Next breath she hands me DS's adeks vitamins and said, most babies don't like the taste.

We KNEW he'd eat regular formula -- argued and argued with her about it. Before we knew he had ME, he gulped down a bottle of infamil. She refused to budge. Told us that regular formula would be bad for him. Wouldn't explain why. Then she and the other nurse started talking about us and DS, while we were in the room. Said DS was slow, had a poor suck reflex and they should get a therapist to come down to work with him... I walked up to the mini-fridge in the NICU and poured myself a shot of his formula -- tasted like vomit & the way road kill smells. Demanded to talk to a doctor to get this changed -- he walked in the door and said "feed the kid what he wants. Kinda silly if he's not going to eat it".

Never saw the dietician again. She refused to deal with us. Amazing though that DS started eating, gaining weight, was released from the hospital shortly afterwards...
 

Ratatosk

Administrator
Staff member
When DS was first diagnosed, we had a dietician with major attitude. Her stepson had CF.

Main issue was with pregistimil. DS had major bottle aversion with it -- we came toward him with the bottle and he'd try to escape, clamp his mouth shut, screamed. They wanted us to force feed it to him. Move his jaw, jam the bottle in. Dietician told us that newborns didn't have developed tastebuds and wouldn't know any better. Next breath she hands me DS's adeks vitamins and said, most babies don't like the taste.

We KNEW he'd eat regular formula -- argued and argued with her about it. Before we knew he had ME, he gulped down a bottle of infamil. She refused to budge. Told us that regular formula would be bad for him. Wouldn't explain why. Then she and the other nurse started talking about us and DS, while we were in the room. Said DS was slow, had a poor suck reflex and they should get a therapist to come down to work with him... I walked up to the mini-fridge in the NICU and poured myself a shot of his formula -- tasted like vomit & the way road kill smells. Demanded to talk to a doctor to get this changed -- he walked in the door and said "feed the kid what he wants. Kinda silly if he's not going to eat it".

Never saw the dietician again. She refused to deal with us. Amazing though that DS started eating, gaining weight, was released from the hospital shortly afterwards...
 

OperaMama

New member
oh, oh, oh-- those mean doctors and all! Not nice to rake you over the coals more, for pete's sake!

If they're small in your family, they may all be carriers of the CF gene! We carriers also manifest certain slight symptoms, it seems...

My CF boy (4 y/o) can't do dairy or lactose anything, but we have a Pediasure-type drink of soy from Bright Beginnings. We add chocolate syrup (non-dairy), and call it a shake too.

Good luck, and keep the faith-- we're all here for you!
 

OperaMama

New member
oh, oh, oh-- those mean doctors and all! Not nice to rake you over the coals more, for pete's sake!

If they're small in your family, they may all be carriers of the CF gene! We carriers also manifest certain slight symptoms, it seems...

My CF boy (4 y/o) can't do dairy or lactose anything, but we have a Pediasure-type drink of soy from Bright Beginnings. We add chocolate syrup (non-dairy), and call it a shake too.

Good luck, and keep the faith-- we're all here for you!
 

OperaMama

New member
oh, oh, oh-- those mean doctors and all! Not nice to rake you over the coals more, for pete's sake!

If they're small in your family, they may all be carriers of the CF gene! We carriers also manifest certain slight symptoms, it seems...

My CF boy (4 y/o) can't do dairy or lactose anything, but we have a Pediasure-type drink of soy from Bright Beginnings. We add chocolate syrup (non-dairy), and call it a shake too.

Good luck, and keep the faith-- we're all here for you!
 

JazzysMom

New member
Our family (on moms side) are short and the girls were all petite in body weight until children &/or hysterectomies. So to say its CF for me is not all so. IMHO I wouldnt worry unless that normally good aspect of genetics interferes with extra weight gain that might be needed for the CF part. It is a good idea to have that extra weight for the "what ifs", but I also believe that if the nutrition iIS being abosrbed and tests indicate such then that is more important at the time. It might be a delicate balancing act for you when the time comes that weight is an NEED and not just a precaution. Address it the best that you can now and handles additional issues as they arise! Dont let them freak you out. You are aware of the problems that can come so just stay alert!
 
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