Sick of defending myself

Mommafirst · Mar 1, 2007

I'm hoping I'm not alone in this, but I am just so annoyed today. I spoke with the CF nutritionist yesterday because we are having Pediasure issues (don't even get me started -- three CASES and all were spoiled and chunky) and I wanted to discuss alternatives for my daughter. That's fine the nutritionist was very helpful and wanted to know my daughters current weight and how she's doing. Well she is doing really great right now. But her weight is quite stalled. She's most definitely falling well below the norm and is hovering around the 5th percentile. I realize its important for CF kids to keep weight on for when they are sick because they can lose ground so quickly. I've been vigilant with this weight thing and I do everything I possibly can. But my daughter is not the only peanut in my household. My non-CF 3 year old also hovers around the 5th percentile, and my non-CF 5 year old was in the 20th percentile for quite some time until he just had some growth spurts and now eats more and is up around the 50th percentile. Anyway, I don't want to get off track here. My point is that I'm not convinced that my daughters weight issues are CF related, its normal for my kids to be small at this age. 
 
So when I said this to the nutritionist she answers that my other kids didn't have to struggle to breathe, though, burning calories. 
 
And when I respond that she doesn't have any lung involvement yet and she is pancreatic sufficient, I get treated like I'm just a silly mother in denial. 
 
Believe me, I am fully aware of CF and how awful it can be. I am also aware that it is most likely that my daughter will develop lung involvement in the future (I hope otherwise, but I really do know the truth). But I live with this child and I live with my other children, and I think I should have some perspective on all of this -- but it seems like I am grouped in with the CF teams perspective of what parents think and do. I am very compliant and vigilant with my daughters care, we do CPT because I insisted that we get it started, she never misses a breathing treatment, and I give her enzymes even though she is PS because the doctors thought it might help her gain weight (it didn't). The team themselves seem to waffle back and forth on whether or not this is CF related, etc. But when I articulate that perhaps its just all a part of our family normal, I get jumped on like I am living in a fantasy world and need to be brought back to reality. 
 
UGH, I'm done venting. Just wondering if other parents are made to feel like they are in denial just because they suggest alternative viewpoints???

Mommafirst · Mar 1, 2007

I'm hoping I'm not alone in this, but I am just so annoyed today. I spoke with the CF nutritionist yesterday because we are having Pediasure issues (don't even get me started -- three CASES and all were spoiled and chunky) and I wanted to discuss alternatives for my daughter. That's fine the nutritionist was very helpful and wanted to know my daughters current weight and how she's doing. Well she is doing really great right now. But her weight is quite stalled. She's most definitely falling well below the norm and is hovering around the 5th percentile. I realize its important for CF kids to keep weight on for when they are sick because they can lose ground so quickly. I've been vigilant with this weight thing and I do everything I possibly can. But my daughter is not the only peanut in my household. My non-CF 3 year old also hovers around the 5th percentile, and my non-CF 5 year old was in the 20th percentile for quite some time until he just had some growth spurts and now eats more and is up around the 50th percentile. Anyway, I don't want to get off track here. My point is that I'm not convinced that my daughters weight issues are CF related, its normal for my kids to be small at this age. 
 
So when I said this to the nutritionist she answers that my other kids didn't have to struggle to breathe, though, burning calories. 
 
And when I respond that she doesn't have any lung involvement yet and she is pancreatic sufficient, I get treated like I'm just a silly mother in denial. 
 
Believe me, I am fully aware of CF and how awful it can be. I am also aware that it is most likely that my daughter will develop lung involvement in the future (I hope otherwise, but I really do know the truth). But I live with this child and I live with my other children, and I think I should have some perspective on all of this -- but it seems like I am grouped in with the CF teams perspective of what parents think and do. I am very compliant and vigilant with my daughters care, we do CPT because I insisted that we get it started, she never misses a breathing treatment, and I give her enzymes even though she is PS because the doctors thought it might help her gain weight (it didn't). The team themselves seem to waffle back and forth on whether or not this is CF related, etc. But when I articulate that perhaps its just all a part of our family normal, I get jumped on like I am living in a fantasy world and need to be brought back to reality. 
 
UGH, I'm done venting. Just wondering if other parents are made to feel like they are in denial just because they suggest alternative viewpoints???

Mommafirst · Mar 1, 2007

I'm hoping I'm not alone in this, but I am just so annoyed today. I spoke with the CF nutritionist yesterday because we are having Pediasure issues (don't even get me started -- three CASES and all were spoiled and chunky) and I wanted to discuss alternatives for my daughter. That's fine the nutritionist was very helpful and wanted to know my daughters current weight and how she's doing. Well she is doing really great right now. But her weight is quite stalled. She's most definitely falling well below the norm and is hovering around the 5th percentile. I realize its important for CF kids to keep weight on for when they are sick because they can lose ground so quickly. I've been vigilant with this weight thing and I do everything I possibly can. But my daughter is not the only peanut in my household. My non-CF 3 year old also hovers around the 5th percentile, and my non-CF 5 year old was in the 20th percentile for quite some time until he just had some growth spurts and now eats more and is up around the 50th percentile. Anyway, I don't want to get off track here. My point is that I'm not convinced that my daughters weight issues are CF related, its normal for my kids to be small at this age. 
 
So when I said this to the nutritionist she answers that my other kids didn't have to struggle to breathe, though, burning calories. 
 
And when I respond that she doesn't have any lung involvement yet and she is pancreatic sufficient, I get treated like I'm just a silly mother in denial. 
 
Believe me, I am fully aware of CF and how awful it can be. I am also aware that it is most likely that my daughter will develop lung involvement in the future (I hope otherwise, but I really do know the truth). But I live with this child and I live with my other children, and I think I should have some perspective on all of this -- but it seems like I am grouped in with the CF teams perspective of what parents think and do. I am very compliant and vigilant with my daughters care, we do CPT because I insisted that we get it started, she never misses a breathing treatment, and I give her enzymes even though she is PS because the doctors thought it might help her gain weight (it didn't). The team themselves seem to waffle back and forth on whether or not this is CF related, etc. But when I articulate that perhaps its just all a part of our family normal, I get jumped on like I am living in a fantasy world and need to be brought back to reality. 
 
UGH, I'm done venting. Just wondering if other parents are made to feel like they are in denial just because they suggest alternative viewpoints???

AnD · Mar 1, 2007

I can only offer you some support and tell you that a friend of mine went through this with her non cf daughter. She was in th 5th or less percentile for height and weight, and the doctor was convinced something was wrong. Despite the fact that my friend is 4' 11'', her husband is 5' 6'', and her entire family is pretty short (and small all over). Long story short, they found nothing wrong after lots of tests- guess what, she's just small like her momma. They didn't test her second daughter, imagine that. If they can't find anything wrong, if all her nutritional levels (vitamins, etc.) are fine, then (in my non medical opinion, of course<img src="i/expressions/face-icon-small-wink.gif" border="0"> ) then I wouldn't worry about it, and just make sure she's getting everything you can possibly stuff in her <img src="i/expressions/face-icon-small-wink.gif" border="0">.

At my last appointment, our nurse freaked a little and started talking to me about drinking supplements like carnation instant breakfast because my weight went down a pound from 3 months ago (my weight can flucuate 5 lbs during pms- 1 lb isn't stressing to me-LOL) and telling me about how crucial good nutrition is for good lung function (which I already knew, and had recently read on the foundation website). I know she was just trying to be proactive, but at 118 lbs and 5' 1'' (13 lbs over the recommended weight), I think I have a little wiggle room. <img src="i/expressions/face-icon-small-wink.gif" border="0">

Are they keeping a check to make sure that her pancreatic sufficiency is currently fine?

My own mother only took me to clinic every 6 months, instead of every 3, because I was stable on my enzymes and had no lung involvement until I was a teenager. She also didn't send me to cf camp (which turned out to be a really good thing) because she didn't want to expose me to other kids who were possibly sicker than I was any more than absolutely necessary (and now most clinics seem to take precautions about that now, so hopefully that is less and less of an issue than it was 30 years ago). My cf doctors also assume right off that my fingers and toes are "clubbed "because of my cf - wrong, they look just like my dad's and my grandmother's- just a family trait.
Just listen to everything you doctor has to say, use your own good judgement and continue to keep an open mind about it, as it may turn out that the doctors find that she does need something else, and you don't want an advisarial relationship with your clinic people or to miss something she needs. Maybe you could get a growth chart from your pediatrician, and compare your children's charts, and bring them to clinic next time for your doctor to review. <img src="i/expressions/face-icon-small-wink.gif" border="0">

I also had problems with my old team about the fact that I am more than just a cf patient- I have a family medical history, individual to me, and that not everything that goes wrong with this body of mine is cf related, and have suffered for it. Now, while accepting that cf does factor into every part of my health, I am not so accepting of the viewpoint that everything that needs attention is just my cf acting up, and insist that I be treated as a whole person with cf. Our adult clinic is better about this than it was when it first started up, and better than the pediatric team I had (I loved them but they also induced some head banging sessions<img src="i/expressions/face-icon-small-wink.gif" border="0">), so it is getting easier.

AnD · Mar 1, 2007

I can only offer you some support and tell you that a friend of mine went through this with her non cf daughter. She was in th 5th or less percentile for height and weight, and the doctor was convinced something was wrong. Despite the fact that my friend is 4' 11'', her husband is 5' 6'', and her entire family is pretty short (and small all over). Long story short, they found nothing wrong after lots of tests- guess what, she's just small like her momma. They didn't test her second daughter, imagine that. If they can't find anything wrong, if all her nutritional levels (vitamins, etc.) are fine, then (in my non medical opinion, of course<img src="i/expressions/face-icon-small-wink.gif" border="0"> ) then I wouldn't worry about it, and just make sure she's getting everything you can possibly stuff in her <img src="i/expressions/face-icon-small-wink.gif" border="0">.

At my last appointment, our nurse freaked a little and started talking to me about drinking supplements like carnation instant breakfast because my weight went down a pound from 3 months ago (my weight can flucuate 5 lbs during pms- 1 lb isn't stressing to me-LOL) and telling me about how crucial good nutrition is for good lung function (which I already knew, and had recently read on the foundation website). I know she was just trying to be proactive, but at 118 lbs and 5' 1'' (13 lbs over the recommended weight), I think I have a little wiggle room. <img src="i/expressions/face-icon-small-wink.gif" border="0">

Are they keeping a check to make sure that her pancreatic sufficiency is currently fine?

My own mother only took me to clinic every 6 months, instead of every 3, because I was stable on my enzymes and had no lung involvement until I was a teenager. She also didn't send me to cf camp (which turned out to be a really good thing) because she didn't want to expose me to other kids who were possibly sicker than I was any more than absolutely necessary (and now most clinics seem to take precautions about that now, so hopefully that is less and less of an issue than it was 30 years ago). My cf doctors also assume right off that my fingers and toes are "clubbed "because of my cf - wrong, they look just like my dad's and my grandmother's- just a family trait.
Just listen to everything you doctor has to say, use your own good judgement and continue to keep an open mind about it, as it may turn out that the doctors find that she does need something else, and you don't want an advisarial relationship with your clinic people or to miss something she needs. Maybe you could get a growth chart from your pediatrician, and compare your children's charts, and bring them to clinic next time for your doctor to review. <img src="i/expressions/face-icon-small-wink.gif" border="0">

I also had problems with my old team about the fact that I am more than just a cf patient- I have a family medical history, individual to me, and that not everything that goes wrong with this body of mine is cf related, and have suffered for it. Now, while accepting that cf does factor into every part of my health, I am not so accepting of the viewpoint that everything that needs attention is just my cf acting up, and insist that I be treated as a whole person with cf. Our adult clinic is better about this than it was when it first started up, and better than the pediatric team I had (I loved them but they also induced some head banging sessions<img src="i/expressions/face-icon-small-wink.gif" border="0">), so it is getting easier.

AnD · Mar 1, 2007

I can only offer you some support and tell you that a friend of mine went through this with her non cf daughter. She was in th 5th or less percentile for height and weight, and the doctor was convinced something was wrong. Despite the fact that my friend is 4' 11'', her husband is 5' 6'', and her entire family is pretty short (and small all over). Long story short, they found nothing wrong after lots of tests- guess what, she's just small like her momma. They didn't test her second daughter, imagine that. If they can't find anything wrong, if all her nutritional levels (vitamins, etc.) are fine, then (in my non medical opinion, of course<img src="i/expressions/face-icon-small-wink.gif" border="0"> ) then I wouldn't worry about it, and just make sure she's getting everything you can possibly stuff in her <img src="i/expressions/face-icon-small-wink.gif" border="0">.

At my last appointment, our nurse freaked a little and started talking to me about drinking supplements like carnation instant breakfast because my weight went down a pound from 3 months ago (my weight can flucuate 5 lbs during pms- 1 lb isn't stressing to me-LOL) and telling me about how crucial good nutrition is for good lung function (which I already knew, and had recently read on the foundation website). I know she was just trying to be proactive, but at 118 lbs and 5' 1'' (13 lbs over the recommended weight), I think I have a little wiggle room. <img src="i/expressions/face-icon-small-wink.gif" border="0">

Are they keeping a check to make sure that her pancreatic sufficiency is currently fine?

My own mother only took me to clinic every 6 months, instead of every 3, because I was stable on my enzymes and had no lung involvement until I was a teenager. She also didn't send me to cf camp (which turned out to be a really good thing) because she didn't want to expose me to other kids who were possibly sicker than I was any more than absolutely necessary (and now most clinics seem to take precautions about that now, so hopefully that is less and less of an issue than it was 30 years ago). My cf doctors also assume right off that my fingers and toes are "clubbed "because of my cf - wrong, they look just like my dad's and my grandmother's- just a family trait.
Just listen to everything you doctor has to say, use your own good judgement and continue to keep an open mind about it, as it may turn out that the doctors find that she does need something else, and you don't want an advisarial relationship with your clinic people or to miss something she needs. Maybe you could get a growth chart from your pediatrician, and compare your children's charts, and bring them to clinic next time for your doctor to review. <img src="i/expressions/face-icon-small-wink.gif" border="0">

I also had problems with my old team about the fact that I am more than just a cf patient- I have a family medical history, individual to me, and that not everything that goes wrong with this body of mine is cf related, and have suffered for it. Now, while accepting that cf does factor into every part of my health, I am not so accepting of the viewpoint that everything that needs attention is just my cf acting up, and insist that I be treated as a whole person with cf. Our adult clinic is better about this than it was when it first started up, and better than the pediatric team I had (I loved them but they also induced some head banging sessions<img src="i/expressions/face-icon-small-wink.gif" border="0">), so it is getting easier.

Mommafirst · Mar 1, 2007

Thanks, I appreciate your wisdom. And yes we just completed another 72 hour stool test to confirm she is still pancreatic sufficient. We will probably do regular testing to make sure we don't miss it if she goes insufficient, but I'm pretty sure I'll notice the difference!!!!

Mommafirst · Mar 1, 2007

Thanks, I appreciate your wisdom. And yes we just completed another 72 hour stool test to confirm she is still pancreatic sufficient. We will probably do regular testing to make sure we don't miss it if she goes insufficient, but I'm pretty sure I'll notice the difference!!!!

Mommafirst · Mar 1, 2007

Thanks, I appreciate your wisdom. And yes we just completed another 72 hour stool test to confirm she is still pancreatic sufficient. We will probably do regular testing to make sure we don't miss it if she goes insufficient, but I'm pretty sure I'll notice the difference!!!!

2005CFmom · Mar 1, 2007

I think it is so true that they often overlook the fact that "regular" genetics can cause your child to be small....it's not always about CF! My non CF daughter is a small, skinny little girl too. But, they are just trying to do there job.

Our clinic goes more by BMI than the height/weight charts (Sarah was not diagnosed until 8, so this may be different for infant/toddlers). They want to see her at 50% or a little more in BMI. So they are perfectly fine with the fact that she is at the 25% for weight because that is where she is at for height also. She recently grew a tiny bit, and lost a little over a pound, so her BMI dropped down to 40%. They didn't give us too much of a hard time, just wanted to know if we wanted to sheet that gave ideas of how to add extra calories...and that was it.

2005CFmom · Mar 1, 2007

I think it is so true that they often overlook the fact that "regular" genetics can cause your child to be small....it's not always about CF! My non CF daughter is a small, skinny little girl too. But, they are just trying to do there job.

Our clinic goes more by BMI than the height/weight charts (Sarah was not diagnosed until 8, so this may be different for infant/toddlers). They want to see her at 50% or a little more in BMI. So they are perfectly fine with the fact that she is at the 25% for weight because that is where she is at for height also. She recently grew a tiny bit, and lost a little over a pound, so her BMI dropped down to 40%. They didn't give us too much of a hard time, just wanted to know if we wanted to sheet that gave ideas of how to add extra calories...and that was it.

2005CFmom · Mar 1, 2007

I think it is so true that they often overlook the fact that "regular" genetics can cause your child to be small....it's not always about CF! My non CF daughter is a small, skinny little girl too. But, they are just trying to do there job.

Our clinic goes more by BMI than the height/weight charts (Sarah was not diagnosed until 8, so this may be different for infant/toddlers). They want to see her at 50% or a little more in BMI. So they are perfectly fine with the fact that she is at the 25% for weight because that is where she is at for height also. She recently grew a tiny bit, and lost a little over a pound, so her BMI dropped down to 40%. They didn't give us too much of a hard time, just wanted to know if we wanted to sheet that gave ideas of how to add extra calories...and that was it.

kayleesgrandma · Mar 1, 2007

The same for Kaylee. She's grown 2 inches, but has lost a pound or two in 6 months. Her mother was very small at birth, the nurses asked if I smoked! I was little also. So it is a family trait with us too.

kayleesgrandma · Mar 1, 2007

The same for Kaylee. She's grown 2 inches, but has lost a pound or two in 6 months. Her mother was very small at birth, the nurses asked if I smoked! I was little also. So it is a family trait with us too.

kayleesgrandma · Mar 1, 2007

The same for Kaylee. She's grown 2 inches, but has lost a pound or two in 6 months. Her mother was very small at birth, the nurses asked if I smoked! I was little also. So it is a family trait with us too.

CFHockeyMom · Mar 1, 2007

We struggle with this as well. Sean is short (4'4") and as such doesn't weigh a whole lot (~62 lbs). His BMI is decent, in fact, it's the same if not a little higher than his brother's who is tall but VERY thin.

Although we have our share of tall people in the family, we also have our share of short people in the family. We also have a history of very late puberty (in males). My mom has the growth charts from my brother and I as we were growing up. Sean is actually slightly bigger than my brother was at the same age. My brother is now 5'10" and about 200lbs. When my dad graduated from high school and joined the airforce he was 5'8" and only 110 lbs. That's not the case anymore...lol. My mom is only 5'1" but her brother is 6'4". Hubby's side of the family is equally as "mixed up".

I've tried desperately to explain this to our Dr. and our dietician but to no avail. They are now talking about a feeding tube for Sean. Frustrating. <img src="i/expressions/face-icon-small-confused.gif" border="0">

CFHockeyMom · Mar 1, 2007

We struggle with this as well. Sean is short (4'4") and as such doesn't weigh a whole lot (~62 lbs). His BMI is decent, in fact, it's the same if not a little higher than his brother's who is tall but VERY thin.

Although we have our share of tall people in the family, we also have our share of short people in the family. We also have a history of very late puberty (in males). My mom has the growth charts from my brother and I as we were growing up. Sean is actually slightly bigger than my brother was at the same age. My brother is now 5'10" and about 200lbs. When my dad graduated from high school and joined the airforce he was 5'8" and only 110 lbs. That's not the case anymore...lol. My mom is only 5'1" but her brother is 6'4". Hubby's side of the family is equally as "mixed up".

I've tried desperately to explain this to our Dr. and our dietician but to no avail. They are now talking about a feeding tube for Sean. Frustrating. <img src="i/expressions/face-icon-small-confused.gif" border="0">

CFHockeyMom · Mar 1, 2007

We struggle with this as well. Sean is short (4'4") and as such doesn't weigh a whole lot (~62 lbs). His BMI is decent, in fact, it's the same if not a little higher than his brother's who is tall but VERY thin.

Although we have our share of tall people in the family, we also have our share of short people in the family. We also have a history of very late puberty (in males). My mom has the growth charts from my brother and I as we were growing up. Sean is actually slightly bigger than my brother was at the same age. My brother is now 5'10" and about 200lbs. When my dad graduated from high school and joined the airforce he was 5'8" and only 110 lbs. That's not the case anymore...lol. My mom is only 5'1" but her brother is 6'4". Hubby's side of the family is equally as "mixed up".

I've tried desperately to explain this to our Dr. and our dietician but to no avail. They are now talking about a feeding tube for Sean. Frustrating. <img src="i/expressions/face-icon-small-confused.gif" border="0">

folione · Mar 1, 2007

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.

folione · Mar 1, 2007

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.

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