Do you think this is possible?

M

Mommafirst

Guest
I am beside myself with what is going on, and I am posting to see if anyone can shed some light on this for me....



When I was pregnant with Alyssa, I joined an online due date club/board that worked much like this one. During the pregnancies there was a core membership of about 100 women, all due the same month as I was. One of the women had a CF scare during her pregnancy, when an echogenic bowel was discovered. But it cleared on its own before the birth and they told her "no CF". Well turns out they were wrong. He was born and immediately had lots of respiratory and digestive issues, and was diagnosed CF at 9 months. Alyssa was diagnosed at 5 months. Now the board has turned into a birthday/parenting club some women have disappeared with the craziness of babies, but there are still probably 50 or so regular posters. In the past two weeks THREE other moms posted that their baby is being test for CF. One lady I know quite well and see her story as quite credible. While I don't know the others as well, they have posted about respiratory and digestive issues over the past few months.

So, can this be possible? Can 5 of 50 babies on this board have CF? I suppose it is possible that there are people who lie to get attention, but man, that would be a really stupid lie.



I know it sounds silly, but I am really bothered by this. I'm bothered that someone might be lying. And I'm bothered that it might be possible that such a high percentage of babies are being diagnosed.



Thanks for listening, I value your thoughts.
 
M

Mommafirst

Guest
I am beside myself with what is going on, and I am posting to see if anyone can shed some light on this for me....



When I was pregnant with Alyssa, I joined an online due date club/board that worked much like this one. During the pregnancies there was a core membership of about 100 women, all due the same month as I was. One of the women had a CF scare during her pregnancy, when an echogenic bowel was discovered. But it cleared on its own before the birth and they told her "no CF". Well turns out they were wrong. He was born and immediately had lots of respiratory and digestive issues, and was diagnosed CF at 9 months. Alyssa was diagnosed at 5 months. Now the board has turned into a birthday/parenting club some women have disappeared with the craziness of babies, but there are still probably 50 or so regular posters. In the past two weeks THREE other moms posted that their baby is being test for CF. One lady I know quite well and see her story as quite credible. While I don't know the others as well, they have posted about respiratory and digestive issues over the past few months.

So, can this be possible? Can 5 of 50 babies on this board have CF? I suppose it is possible that there are people who lie to get attention, but man, that would be a really stupid lie.



I know it sounds silly, but I am really bothered by this. I'm bothered that someone might be lying. And I'm bothered that it might be possible that such a high percentage of babies are being diagnosed.



Thanks for listening, I value your thoughts.
 
M

Mommafirst

Guest
I am beside myself with what is going on, and I am posting to see if anyone can shed some light on this for me....



When I was pregnant with Alyssa, I joined an online due date club/board that worked much like this one. During the pregnancies there was a core membership of about 100 women, all due the same month as I was. One of the women had a CF scare during her pregnancy, when an echogenic bowel was discovered. But it cleared on its own before the birth and they told her "no CF". Well turns out they were wrong. He was born and immediately had lots of respiratory and digestive issues, and was diagnosed CF at 9 months. Alyssa was diagnosed at 5 months. Now the board has turned into a birthday/parenting club some women have disappeared with the craziness of babies, but there are still probably 50 or so regular posters. In the past two weeks THREE other moms posted that their baby is being test for CF. One lady I know quite well and see her story as quite credible. While I don't know the others as well, they have posted about respiratory and digestive issues over the past few months.

So, can this be possible? Can 5 of 50 babies on this board have CF? I suppose it is possible that there are people who lie to get attention, but man, that would be a really stupid lie.



I know it sounds silly, but I am really bothered by this. I'm bothered that someone might be lying. And I'm bothered that it might be possible that such a high percentage of babies are being diagnosed.



Thanks for listening, I value your thoughts.
 
D

dyza

New member
Newborn screening, where they test for a variety of stuff, has started as practice here in Scotland, England next year, and I understand that some states in the US, Wisconsin springs to mind, have started this practice also. Maybe this would increase the numbers being dx at an early age, but I agree with you that it does seem unaturaly high figures, maybe it is just coincidence. You cant really ask the people outright, but then again with your knowledge of CF it will soon become apparent wether someone is bluffing. Remember that man in Rhode island? recently.
 
D

dyza

New member
Newborn screening, where they test for a variety of stuff, has started as practice here in Scotland, England next year, and I understand that some states in the US, Wisconsin springs to mind, have started this practice also. Maybe this would increase the numbers being dx at an early age, but I agree with you that it does seem unaturaly high figures, maybe it is just coincidence. You cant really ask the people outright, but then again with your knowledge of CF it will soon become apparent wether someone is bluffing. Remember that man in Rhode island? recently.
 
D

dyza

New member
Newborn screening, where they test for a variety of stuff, has started as practice here in Scotland, England next year, and I understand that some states in the US, Wisconsin springs to mind, have started this practice also. Maybe this would increase the numbers being dx at an early age, but I agree with you that it does seem unaturaly high figures, maybe it is just coincidence. You cant really ask the people outright, but then again with your knowledge of CF it will soon become apparent wether someone is bluffing. Remember that man in Rhode island? recently.
 
M

Mommafirst

Guest
You are right, I will see through it eventually. It makes me sad to consider that any of them could be lying, I've invested a lot of time into getting to know these ladies and their babies. It really upsets me to think any would be looking for attention in this way, when I'd give anything to keep my daughter as healthy and drama free as possible!!
 
M

Mommafirst

Guest
You are right, I will see through it eventually. It makes me sad to consider that any of them could be lying, I've invested a lot of time into getting to know these ladies and their babies. It really upsets me to think any would be looking for attention in this way, when I'd give anything to keep my daughter as healthy and drama free as possible!!
 
M

Mommafirst

Guest
You are right, I will see through it eventually. It makes me sad to consider that any of them could be lying, I've invested a lot of time into getting to know these ladies and their babies. It really upsets me to think any would be looking for attention in this way, when I'd give anything to keep my daughter as healthy and drama free as possible!!
 
A

anonymous

New member
I think they could be telling the truth. If they are just talking about having a sweat test to test for cf then I can see 5 out of 50 kids being tested. Although it's rare to have cf I don't think it's that rare to test for it. For instance our hospital tests 3-4 kids per day five days a week. Thats 15-20 kids per week and they definately don't have that many positive results a week. Plus it is possible that since you have two kids already diagnosed in your group that now the other mothers that have a baby that coughs a little too much are getting paranoid and pushing their doctor to test for cf.
 
A

anonymous

New member
I think they could be telling the truth. If they are just talking about having a sweat test to test for cf then I can see 5 out of 50 kids being tested. Although it's rare to have cf I don't think it's that rare to test for it. For instance our hospital tests 3-4 kids per day five days a week. Thats 15-20 kids per week and they definately don't have that many positive results a week. Plus it is possible that since you have two kids already diagnosed in your group that now the other mothers that have a baby that coughs a little too much are getting paranoid and pushing their doctor to test for cf.
 
A

anonymous

New member
I think they could be telling the truth. If they are just talking about having a sweat test to test for cf then I can see 5 out of 50 kids being tested. Although it's rare to have cf I don't think it's that rare to test for it. For instance our hospital tests 3-4 kids per day five days a week. Thats 15-20 kids per week and they definately don't have that many positive results a week. Plus it is possible that since you have two kids already diagnosed in your group that now the other mothers that have a baby that coughs a little too much are getting paranoid and pushing their doctor to test for cf.
 
J

JazzysMom

New member
More & more babies will get tested for CF for a few reasons. The American Pediatric & OB Associations are pushing for ALL states to include CF screening in the routine prenatal screening. When I went to my checkup last they had 4 sweat tests scheduled just from what the initial blood work red flags on the babies. It doesnt mean they have it, but its a red flag for the to test & rule it out if nothing else. This is a good thing because it catches the dx early. I would hope these woman arent using CF in an inappropriate way. THo we have had that on this board. Someone pretending to have CF when they didnt. Unrealistic? NO....Probable? YES!
 
J

JazzysMom

New member
More & more babies will get tested for CF for a few reasons. The American Pediatric & OB Associations are pushing for ALL states to include CF screening in the routine prenatal screening. When I went to my checkup last they had 4 sweat tests scheduled just from what the initial blood work red flags on the babies. It doesnt mean they have it, but its a red flag for the to test & rule it out if nothing else. This is a good thing because it catches the dx early. I would hope these woman arent using CF in an inappropriate way. THo we have had that on this board. Someone pretending to have CF when they didnt. Unrealistic? NO....Probable? YES!
 
J

JazzysMom

New member
More & more babies will get tested for CF for a few reasons. The American Pediatric & OB Associations are pushing for ALL states to include CF screening in the routine prenatal screening. When I went to my checkup last they had 4 sweat tests scheduled just from what the initial blood work red flags on the babies. It doesnt mean they have it, but its a red flag for the to test & rule it out if nothing else. This is a good thing because it catches the dx early. I would hope these woman arent using CF in an inappropriate way. THo we have had that on this board. Someone pretending to have CF when they didnt. Unrealistic? NO....Probable? YES!
 
A

anonymous

New member
As other peope have stated, just because they are undergoing testing does not mean that these childern have CF. I I really doubt that these women are lying for attention. It seems much more likely, that as another woman stated, they are simply concerned since they are aware of the disease and are pushing their doc for testing. How was your baby diagnosed? Was your awareness of CF heightened after your pregnant friend had a run in with echogenic bowel? Did your knowledge of CF affect the timing if your own daughter's diagnosis?

Also how would you feel if these women thought the coincidence was odd and presumed you were lying for attention?
 
A

anonymous

New member
As other peope have stated, just because they are undergoing testing does not mean that these childern have CF. I I really doubt that these women are lying for attention. It seems much more likely, that as another woman stated, they are simply concerned since they are aware of the disease and are pushing their doc for testing. How was your baby diagnosed? Was your awareness of CF heightened after your pregnant friend had a run in with echogenic bowel? Did your knowledge of CF affect the timing if your own daughter's diagnosis?

Also how would you feel if these women thought the coincidence was odd and presumed you were lying for attention?
 
A

anonymous

New member
As other peope have stated, just because they are undergoing testing does not mean that these childern have CF. I I really doubt that these women are lying for attention. It seems much more likely, that as another woman stated, they are simply concerned since they are aware of the disease and are pushing their doc for testing. How was your baby diagnosed? Was your awareness of CF heightened after your pregnant friend had a run in with echogenic bowel? Did your knowledge of CF affect the timing if your own daughter's diagnosis?

Also how would you feel if these women thought the coincidence was odd and presumed you were lying for attention?
 
A

anonymous

New member
Hi Heather!
Just wanted to share that I have been surprised at the number of people that I have met in my hometown with children who have had CF testing for one reason or another. The children of two of my friends included, which I never knew until they shared after our ordeal. There are always many others being tested when we go in for sweat tests. Not too mention on another board I visit I see posts all of the time that say "CF" to me, but of course, that is probably my own paranoia from all of the material that I've ingested over the last year. I've always kind of felt that more people probably have it than we even know and we will see an increase with all the new NBS taking place......or at least more of an awareness that will promote more testing.
Anyway, hope Alyssa is doing well!

Misty
 
A

anonymous

New member
Hi Heather!
Just wanted to share that I have been surprised at the number of people that I have met in my hometown with children who have had CF testing for one reason or another. The children of two of my friends included, which I never knew until they shared after our ordeal. There are always many others being tested when we go in for sweat tests. Not too mention on another board I visit I see posts all of the time that say "CF" to me, but of course, that is probably my own paranoia from all of the material that I've ingested over the last year. I've always kind of felt that more people probably have it than we even know and we will see an increase with all the new NBS taking place......or at least more of an awareness that will promote more testing.
Anyway, hope Alyssa is doing well!

Misty
 
You must log in or register to reply here.
Top