D
Drai5
Guest
Hello,
This is my very first time posting here. I never thought I would find myself posing questions in regard to CF and my children, as I thought any fear of CF would have been completely put to rest by my prenatal testing and newborn screening. Apparently, as I am learning, this is not always the case.
I just got back a little while ago from an over night stay at a children's hospital following my daughter's first experience with rectal prolapse.
After speaking with the gastroenterologist at the end of her 24 hour observation period, I learned that it is protocol to send children her age with rectal prolapse for a sweat test for CF. He sort of brushed it off, and I brushed it off as well. Then, of course, I came home and googled it.
I am currently quite terrified, because it seems she may have some symptoms of CF, and I am in desperate need of input. Here is a little background, please tell me what you think:
-She is 2 years and 7 months old. She tested negative for CF during new born screening, and I also tested negative for whatever gene mutations are tested for during early pregnancy- in each of my three pregnancies. She is my middle child, I also have two sons ages almost 4 years old and 10 months old.
-She has had severe constipation with abdominal pain for 9+ months. Her stool is often the size of a baseball and hard as a rock. Other times it is very soft, but no less painful for her to pass.
-She only had one rectal prolapse, which took place yesterday afternoon following an enema.
-Since birth, she has had very foul smelling stool. She can clear a room. It is much more smelly than my other two children.
-She has always had a decent appetite, but has never really put on much weight. She has been consistently in the 5-10th percentile for weight since birth. She didn't catch up to the 25th percentile until her 2 year well child visit. She is very petite.
-Since late infancy, she has had large, hard green "boogers" in each nostril, almost everyday and when she is not sick, nearly completely blocking her nostrils. They are huge. On the days she does not have that type of hard mucus, her nose seems to always be crusty and have "boogers".
-Lately (last few months) her eating and sleeping habits have changed. She eats less, drinks more liquids, and wants to sleep in our bed.
-She has never had breathing or lung issues that would signal a problem. She is currently getting over a viral upper respiratory infection (her lungs sounded clear) and her first ear infection.
In addition, I am thinking that my 10 month old son also has some concerning symptoms:
-He has a very large appetite and loves "solid" (baby) food. He eats a lot, and moves his bowls sometimes up to 3-4 times per day, often ruining an outfit.
-He is also on the smaller side- 25th percentile for weight.
-He has had what seems to be one cold after another for the last few months. He had at least 3-4 coughs in a row, and is currently getting over bronchiolitis and a double ear infection.
-He would often sound gurgly when sick.
-History of pyloric stenosis (6 weeks old).
-Passed new born screening for CF.
What do you think? Should I be very concerned? The sweat test is not yet ordered, as the gastroenterologist wants to schedule it at her 2 week follow-up appointment. That seems like an eternity from now. Do you think I should insist that my 10 month old be tested as well?
Any input or information you could pass on would be greatly appreciated! I am one extremely anxious momma right now!
This is my very first time posting here. I never thought I would find myself posing questions in regard to CF and my children, as I thought any fear of CF would have been completely put to rest by my prenatal testing and newborn screening. Apparently, as I am learning, this is not always the case.
I just got back a little while ago from an over night stay at a children's hospital following my daughter's first experience with rectal prolapse.
After speaking with the gastroenterologist at the end of her 24 hour observation period, I learned that it is protocol to send children her age with rectal prolapse for a sweat test for CF. He sort of brushed it off, and I brushed it off as well. Then, of course, I came home and googled it.
I am currently quite terrified, because it seems she may have some symptoms of CF, and I am in desperate need of input. Here is a little background, please tell me what you think:
-She is 2 years and 7 months old. She tested negative for CF during new born screening, and I also tested negative for whatever gene mutations are tested for during early pregnancy- in each of my three pregnancies. She is my middle child, I also have two sons ages almost 4 years old and 10 months old.
-She has had severe constipation with abdominal pain for 9+ months. Her stool is often the size of a baseball and hard as a rock. Other times it is very soft, but no less painful for her to pass.
-She only had one rectal prolapse, which took place yesterday afternoon following an enema.
-Since birth, she has had very foul smelling stool. She can clear a room. It is much more smelly than my other two children.
-She has always had a decent appetite, but has never really put on much weight. She has been consistently in the 5-10th percentile for weight since birth. She didn't catch up to the 25th percentile until her 2 year well child visit. She is very petite.
-Since late infancy, she has had large, hard green "boogers" in each nostril, almost everyday and when she is not sick, nearly completely blocking her nostrils. They are huge. On the days she does not have that type of hard mucus, her nose seems to always be crusty and have "boogers".
-Lately (last few months) her eating and sleeping habits have changed. She eats less, drinks more liquids, and wants to sleep in our bed.
-She has never had breathing or lung issues that would signal a problem. She is currently getting over a viral upper respiratory infection (her lungs sounded clear) and her first ear infection.
In addition, I am thinking that my 10 month old son also has some concerning symptoms:
-He has a very large appetite and loves "solid" (baby) food. He eats a lot, and moves his bowls sometimes up to 3-4 times per day, often ruining an outfit.
-He is also on the smaller side- 25th percentile for weight.
-He has had what seems to be one cold after another for the last few months. He had at least 3-4 coughs in a row, and is currently getting over bronchiolitis and a double ear infection.
-He would often sound gurgly when sick.
-History of pyloric stenosis (6 weeks old).
-Passed new born screening for CF.
What do you think? Should I be very concerned? The sweat test is not yet ordered, as the gastroenterologist wants to schedule it at her 2 week follow-up appointment. That seems like an eternity from now. Do you think I should insist that my 10 month old be tested as well?
Any input or information you could pass on would be greatly appreciated! I am one extremely anxious momma right now!
