Newly dx'ed 7yr old w/ severe growth failure, testing other 2 kids. Anyone relate?

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valigirl21

Guest
Harriett, I can TOTALLY relate to you except you have a dx. If you read my tag you'll see all my son's problems. Let me say, first and foremost, it is not your fault. My son has been sick since birth pretty much. At 6 months, after being released from the hospital where he spent 2 weeks, we swithched to an "asthma specialist" pedi. She mentioned testing for CF, but then decided later not to, that it was just asthma. At 2 yrs old my son weighed 17 lbs. He wore 12 mnth clothes with the waist too big. He has always been less than 5%ile on growth and weight. Never was he without a runny nose. He was ALWAYS sick. When he was 7 he was reffered to a neuro to help w/ the Autism stuff. HE sent us to all the specialists that eventually led us where we are today. They are doctors and we trust there expertese. Your daughter's dx is a lessoned learned; now you know what we all learn eventually-you are your child's advocate, and if you think something is wrong...it probably is. I'm gladyou found us, and you can always PM anybody or post here.
 
V

valigirl21

Guest
Harriett, I can TOTALLY relate to you except you have a dx. If you read my tag you'll see all my son's problems. Let me say, first and foremost, it is not your fault. My son has been sick since birth pretty much. At 6 months, after being released from the hospital where he spent 2 weeks, we swithched to an "asthma specialist" pedi. She mentioned testing for CF, but then decided later not to, that it was just asthma. At 2 yrs old my son weighed 17 lbs. He wore 12 mnth clothes with the waist too big. He has always been less than 5%ile on growth and weight. Never was he without a runny nose. He was ALWAYS sick. When he was 7 he was reffered to a neuro to help w/ the Autism stuff. HE sent us to all the specialists that eventually led us where we are today. They are doctors and we trust there expertese. Your daughter's dx is a lessoned learned; now you know what we all learn eventually-you are your child's advocate, and if you think something is wrong...it probably is. I'm gladyou found us, and you can always PM anybody or post here.
 
V

valigirl21

Guest
Harriett, I can TOTALLY relate to you except you have a dx. If you read my tag you'll see all my son's problems. Let me say, first and foremost, it is not your fault. My son has been sick since birth pretty much. At 6 months, after being released from the hospital where he spent 2 weeks, we swithched to an "asthma specialist" pedi. She mentioned testing for CF, but then decided later not to, that it was just asthma. At 2 yrs old my son weighed 17 lbs. He wore 12 mnth clothes with the waist too big. He has always been less than 5%ile on growth and weight. Never was he without a runny nose. He was ALWAYS sick. When he was 7 he was reffered to a neuro to help w/ the Autism stuff. HE sent us to all the specialists that eventually led us where we are today. They are doctors and we trust there expertese. Your daughter's dx is a lessoned learned; now you know what we all learn eventually-you are your child's advocate, and if you think something is wrong...it probably is. I'm gladyou found us, and you can always PM anybody or post here.
 
V

valigirl21

Guest
Harriett, I can TOTALLY relate to you except you have a dx. If you read my tag you'll see all my son's problems. Let me say, first and foremost, it is not your fault. My son has been sick since birth pretty much. At 6 months, after being released from the hospital where he spent 2 weeks, we swithched to an "asthma specialist" pedi. She mentioned testing for CF, but then decided later not to, that it was just asthma. At 2 yrs old my son weighed 17 lbs. He wore 12 mnth clothes with the waist too big. He has always been less than 5%ile on growth and weight. Never was he without a runny nose. He was ALWAYS sick. When he was 7 he was reffered to a neuro to help w/ the Autism stuff. HE sent us to all the specialists that eventually led us where we are today. They are doctors and we trust there expertese. Your daughter's dx is a lessoned learned; now you know what we all learn eventually-you are your child's advocate, and if you think something is wrong...it probably is. I'm gladyou found us, and you can always PM anybody or post here.
 
V

valigirl21

Guest
Harriett, I can TOTALLY relate to you except you have a dx. If you read my tag you'll see all my son's problems. Let me say, first and foremost, it is not your fault. My son has been sick since birth pretty much. At 6 months, after being released from the hospital where he spent 2 weeks, we swithched to an "asthma specialist" pedi. She mentioned testing for CF, but then decided later not to, that it was just asthma. At 2 yrs old my son weighed 17 lbs. He wore 12 mnth clothes with the waist too big. He has always been less than 5%ile on growth and weight. Never was he without a runny nose. He was ALWAYS sick. When he was 7 he was reffered to a neuro to help w/ the Autism stuff. HE sent us to all the specialists that eventually led us where we are today. They are doctors and we trust there expertese. Your daughter's dx is a lessoned learned; now you know what we all learn eventually-you are your child's advocate, and if you think something is wrong...it probably is. I'm gladyou found us, and you can always PM anybody or post here.
 
C

chrissyd

New member
I can relate; but from the other end of the spectrum. I wasn't diagnosed until I was 21. My mother and father went through so many years; not knowing how bad my health really was. They even brought up CF when I was a baby; to which my ped laughed and told my mother she was paranoid.
"If she had CF she would be dead or dying"....(1977)

I'm sorry it took your doctor so long, and the DX is not an easy one especially since there is still much we don't know.
But the doc's are learning and we are living longer.

Welcome to the site. We are here to help each other! Keep us posted!

<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
I can relate; but from the other end of the spectrum. I wasn't diagnosed until I was 21. My mother and father went through so many years; not knowing how bad my health really was. They even brought up CF when I was a baby; to which my ped laughed and told my mother she was paranoid.
"If she had CF she would be dead or dying"....(1977)

I'm sorry it took your doctor so long, and the DX is not an easy one especially since there is still much we don't know.
But the doc's are learning and we are living longer.

Welcome to the site. We are here to help each other! Keep us posted!

<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
I can relate; but from the other end of the spectrum. I wasn't diagnosed until I was 21. My mother and father went through so many years; not knowing how bad my health really was. They even brought up CF when I was a baby; to which my ped laughed and told my mother she was paranoid.
"If she had CF she would be dead or dying"....(1977)

I'm sorry it took your doctor so long, and the DX is not an easy one especially since there is still much we don't know.
But the doc's are learning and we are living longer.

Welcome to the site. We are here to help each other! Keep us posted!

<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
I can relate; but from the other end of the spectrum. I wasn't diagnosed until I was 21. My mother and father went through so many years; not knowing how bad my health really was. They even brought up CF when I was a baby; to which my ped laughed and told my mother she was paranoid.
"If she had CF she would be dead or dying"....(1977)

I'm sorry it took your doctor so long, and the DX is not an easy one especially since there is still much we don't know.
But the doc's are learning and we are living longer.

Welcome to the site. We are here to help each other! Keep us posted!

<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
I can relate; but from the other end of the spectrum. I wasn't diagnosed until I was 21. My mother and father went through so many years; not knowing how bad my health really was. They even brought up CF when I was a baby; to which my ped laughed and told my mother she was paranoid.
<br />"If she had CF she would be dead or dying"....(1977)
<br />
<br />I'm sorry it took your doctor so long, and the DX is not an easy one especially since there is still much we don't know.
<br />But the doc's are learning and we are living longer.
<br />
<br />Welcome to the site. We are here to help each other! Keep us posted!
<br />
<br /><img src="i/expressions/rose.gif" border="0">
 
D

DDPitts99

New member
Your daughter seems amazing! I know how you feel (well almost). I havent gotten a diagnosis yet on my son (Drew who is 2) we have gone to som many docs lately! i feel like they dont care about him you know. I took hime because he has always been constipated and so they sprung CF on me. He is a little underweight, but one thing that we know is he has a severe milk allergy. I am thinking thatcould be causeing the problems. Well he done a sweat test which was a 41 and they have schelduled another one and the genetic doc is waiting to get my blood back. They have Drews and his daddys which we know is a carrier. I am just to the point JUST TELL ME!! Every dr app brings another test and no answers! I will pray for your family and your little girl! Thanks for letting me vent and any advice from anyone is greatly appreciated!!
 
D

DDPitts99

New member
Your daughter seems amazing! I know how you feel (well almost). I havent gotten a diagnosis yet on my son (Drew who is 2) we have gone to som many docs lately! i feel like they dont care about him you know. I took hime because he has always been constipated and so they sprung CF on me. He is a little underweight, but one thing that we know is he has a severe milk allergy. I am thinking thatcould be causeing the problems. Well he done a sweat test which was a 41 and they have schelduled another one and the genetic doc is waiting to get my blood back. They have Drews and his daddys which we know is a carrier. I am just to the point JUST TELL ME!! Every dr app brings another test and no answers! I will pray for your family and your little girl! Thanks for letting me vent and any advice from anyone is greatly appreciated!!
 
D

DDPitts99

New member
Your daughter seems amazing! I know how you feel (well almost). I havent gotten a diagnosis yet on my son (Drew who is 2) we have gone to som many docs lately! i feel like they dont care about him you know. I took hime because he has always been constipated and so they sprung CF on me. He is a little underweight, but one thing that we know is he has a severe milk allergy. I am thinking thatcould be causeing the problems. Well he done a sweat test which was a 41 and they have schelduled another one and the genetic doc is waiting to get my blood back. They have Drews and his daddys which we know is a carrier. I am just to the point JUST TELL ME!! Every dr app brings another test and no answers! I will pray for your family and your little girl! Thanks for letting me vent and any advice from anyone is greatly appreciated!!
 
D

DDPitts99

New member
Your daughter seems amazing! I know how you feel (well almost). I havent gotten a diagnosis yet on my son (Drew who is 2) we have gone to som many docs lately! i feel like they dont care about him you know. I took hime because he has always been constipated and so they sprung CF on me. He is a little underweight, but one thing that we know is he has a severe milk allergy. I am thinking thatcould be causeing the problems. Well he done a sweat test which was a 41 and they have schelduled another one and the genetic doc is waiting to get my blood back. They have Drews and his daddys which we know is a carrier. I am just to the point JUST TELL ME!! Every dr app brings another test and no answers! I will pray for your family and your little girl! Thanks for letting me vent and any advice from anyone is greatly appreciated!!
 
D

DDPitts99

New member
Your daughter seems amazing! I know how you feel (well almost). I havent gotten a diagnosis yet on my son (Drew who is 2) we have gone to som many docs lately! i feel like they dont care about him you know. I took hime because he has always been constipated and so they sprung CF on me. He is a little underweight, but one thing that we know is he has a severe milk allergy. I am thinking thatcould be causeing the problems. Well he done a sweat test which was a 41 and they have schelduled another one and the genetic doc is waiting to get my blood back. They have Drews and his daddys which we know is a carrier. I am just to the point JUST TELL ME!! Every dr app brings another test and no answers! I will pray for your family and your little girl! Thanks for letting me vent and any advice from anyone is greatly appreciated!!
 
S

Saskiaatje

New member
DDpitts99, I know exactly how you feel! My daughter, almost 2 now, is also constipated, has milk-allergy, is underweight (but in good proportion weight/height) and they are thinking about CF as well. We did all kinds of test: blood for DNA, sweattest (49 and 33) and also a biopt in her intestinal. In her blood, they found only one mutation: DF 508. They are looking for the second, but this can take months. The biopt showed that there was very little cftr-protein, but what was there had a almost normal function. Now they say: she has a mild CF or she is only a carrier. A carrier can have the same result on the biopt. It's all so difficult not knowing if it will be CF or if it won't. And if it is, what does a mild CF mean? The doctors are telling us that you can be very old with it, 70 years. But there are no garanties. I'm just hoping she will be only a carrier! I hope that for you too!
 
S

Saskiaatje

New member
DDpitts99, I know exactly how you feel! My daughter, almost 2 now, is also constipated, has milk-allergy, is underweight (but in good proportion weight/height) and they are thinking about CF as well. We did all kinds of test: blood for DNA, sweattest (49 and 33) and also a biopt in her intestinal. In her blood, they found only one mutation: DF 508. They are looking for the second, but this can take months. The biopt showed that there was very little cftr-protein, but what was there had a almost normal function. Now they say: she has a mild CF or she is only a carrier. A carrier can have the same result on the biopt. It's all so difficult not knowing if it will be CF or if it won't. And if it is, what does a mild CF mean? The doctors are telling us that you can be very old with it, 70 years. But there are no garanties. I'm just hoping she will be only a carrier! I hope that for you too!
 
S

Saskiaatje

New member
DDpitts99, I know exactly how you feel! My daughter, almost 2 now, is also constipated, has milk-allergy, is underweight (but in good proportion weight/height) and they are thinking about CF as well. We did all kinds of test: blood for DNA, sweattest (49 and 33) and also a biopt in her intestinal. In her blood, they found only one mutation: DF 508. They are looking for the second, but this can take months. The biopt showed that there was very little cftr-protein, but what was there had a almost normal function. Now they say: she has a mild CF or she is only a carrier. A carrier can have the same result on the biopt. It's all so difficult not knowing if it will be CF or if it won't. And if it is, what does a mild CF mean? The doctors are telling us that you can be very old with it, 70 years. But there are no garanties. I'm just hoping she will be only a carrier! I hope that for you too!
 
S

Saskiaatje

New member
DDpitts99, I know exactly how you feel! My daughter, almost 2 now, is also constipated, has milk-allergy, is underweight (but in good proportion weight/height) and they are thinking about CF as well. We did all kinds of test: blood for DNA, sweattest (49 and 33) and also a biopt in her intestinal. In her blood, they found only one mutation: DF 508. They are looking for the second, but this can take months. The biopt showed that there was very little cftr-protein, but what was there had a almost normal function. Now they say: she has a mild CF or she is only a carrier. A carrier can have the same result on the biopt. It's all so difficult not knowing if it will be CF or if it won't. And if it is, what does a mild CF mean? The doctors are telling us that you can be very old with it, 70 years. But there are no garanties. I'm just hoping she will be only a carrier! I hope that for you too!
 
S

Saskiaatje

New member
DDpitts99, I know exactly how you feel! My daughter, almost 2 now, is also constipated, has milk-allergy, is underweight (but in good proportion weight/height) and they are thinking about CF as well. We did all kinds of test: blood for DNA, sweattest (49 and 33) and also a biopt in her intestinal. In her blood, they found only one mutation: DF 508. They are looking for the second, but this can take months. The biopt showed that there was very little cftr-protein, but what was there had a almost normal function. Now they say: she has a mild CF or she is only a carrier. A carrier can have the same result on the biopt. It's all so difficult not knowing if it will be CF or if it won't. And if it is, what does a mild CF mean? The doctors are telling us that you can be very old with it, 70 years. But there are no garanties. I'm just hoping she will be only a carrier! I hope that for you too!
 
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