Do you think this is possible?

[anonymous]

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

 

[Mommafirst]

I appreciate your input, but I just can't help that my BS meter has been ticked on this. I agree that testing does not = CF, and I certainly hope for their sakes it isn't CF or anything serious. NONE of the women I am worried about is saying that they think its CF and they are pushing for testing, but instead they have implied that their doctors are pushing for it. I'm not gonna go into my list of reasons for being concerned about this being fake, but the list is very very long. I was more curious on this board if 5 out of 50 is a feasible number. Seems highly unlikely to me.



And to answer your other questions. . . no my CF awareness was hardly heightened at all by my online friend's echogenic bowel issue. My daughter was born with meconium illeus and the doctors never saw it on the ultrasound. I didn't even mentally put the two together until we were completely diagnosed. So it had nothing to do with us at all. Honestly, if people on the board think I am lying, than that is their right. I hardly post about the CF stuff on my baby board because I don't want to bum out all the others with their own new babies. But they were around through the testing and know that Alyssa has CF.

I would never fail to be supportive to another mom going through what I have already gone through. I have tried to be supportive even though I have questions about their honesty -- but I just can't help that my intuition is telling me that something is not right here.

 

[Mommafirst]

I appreciate your input, but I just can't help that my BS meter has been ticked on this. I agree that testing does not = CF, and I certainly hope for their sakes it isn't CF or anything serious. NONE of the women I am worried about is saying that they think its CF and they are pushing for testing, but instead they have implied that their doctors are pushing for it. I'm not gonna go into my list of reasons for being concerned about this being fake, but the list is very very long. I was more curious on this board if 5 out of 50 is a feasible number. Seems highly unlikely to me.



And to answer your other questions. . . no my CF awareness was hardly heightened at all by my online friend's echogenic bowel issue. My daughter was born with meconium illeus and the doctors never saw it on the ultrasound. I didn't even mentally put the two together until we were completely diagnosed. So it had nothing to do with us at all. Honestly, if people on the board think I am lying, than that is their right. I hardly post about the CF stuff on my baby board because I don't want to bum out all the others with their own new babies. But they were around through the testing and know that Alyssa has CF.

I would never fail to be supportive to another mom going through what I have already gone through. I have tried to be supportive even though I have questions about their honesty -- but I just can't help that my intuition is telling me that something is not right here.

 

[Mommafirst]

I appreciate your input, but I just can't help that my BS meter has been ticked on this. I agree that testing does not = CF, and I certainly hope for their sakes it isn't CF or anything serious. NONE of the women I am worried about is saying that they think its CF and they are pushing for testing, but instead they have implied that their doctors are pushing for it. I'm not gonna go into my list of reasons for being concerned about this being fake, but the list is very very long. I was more curious on this board if 5 out of 50 is a feasible number. Seems highly unlikely to me.



And to answer your other questions. . . no my CF awareness was hardly heightened at all by my online friend's echogenic bowel issue. My daughter was born with meconium illeus and the doctors never saw it on the ultrasound. I didn't even mentally put the two together until we were completely diagnosed. So it had nothing to do with us at all. Honestly, if people on the board think I am lying, than that is their right. I hardly post about the CF stuff on my baby board because I don't want to bum out all the others with their own new babies. But they were around through the testing and know that Alyssa has CF.

I would never fail to be supportive to another mom going through what I have already gone through. I have tried to be supportive even though I have questions about their honesty -- but I just can't help that my intuition is telling me that something is not right here.

 

[Mommafirst]

Hey Misty!!

I agree, I know a lot more people being tested than I knew before. And you are right, it seems like there are a lot of possible missed diagnoses out there. I guess we'll see with the NBS if the numbers diagnosed wind up increasing.

 

[Mommafirst]

Hey Misty!!

I agree, I know a lot more people being tested than I knew before. And you are right, it seems like there are a lot of possible missed diagnoses out there. I guess we'll see with the NBS if the numbers diagnosed wind up increasing.

 

[Mommafirst]

Hey Misty!!

I agree, I know a lot more people being tested than I knew before. And you are right, it seems like there are a lot of possible missed diagnoses out there. I guess we'll see with the NBS if the numbers diagnosed wind up increasing.

 

[anonymous]

Well, I have several friends whose children have asthma. For asthma kids who see pulmos with children's clinics (esp those that are also cf accredited), it is fairly common place to test for CF as a rule out. Same is true in FTT babies who've had any hint of respiratory issue and see a pedi GI through a children's clinic. When our children had their sweat tests, the tech told me that they test roughly 20/week but only end up getting positives on a hand full of children each year.

Personally, I think it's very plausible to have 3 being tested. Now, if they all come up pos, that would be very strange IMO.

 

[anonymous]

Well, I have several friends whose children have asthma. For asthma kids who see pulmos with children's clinics (esp those that are also cf accredited), it is fairly common place to test for CF as a rule out. Same is true in FTT babies who've had any hint of respiratory issue and see a pedi GI through a children's clinic. When our children had their sweat tests, the tech told me that they test roughly 20/week but only end up getting positives on a hand full of children each year.

Personally, I think it's very plausible to have 3 being tested. Now, if they all come up pos, that would be very strange IMO.

 

[anonymous]

Well, I have several friends whose children have asthma. For asthma kids who see pulmos with children's clinics (esp those that are also cf accredited), it is fairly common place to test for CF as a rule out. Same is true in FTT babies who've had any hint of respiratory issue and see a pedi GI through a children's clinic. When our children had their sweat tests, the tech told me that they test roughly 20/week but only end up getting positives on a hand full of children each year.

Personally, I think it's very plausible to have 3 being tested. Now, if they all come up pos, that would be very strange IMO.

 

[anonymous]

That is probably unusual but still possible! I belong to a group like yours (we have been together for over 4 years now!) and while my child is the only one with CF there have been 2 others tested for it. I don't blame you for having your BS meter turned on! I imagine if you stick with the group you will get to know them well enough to find out what is really going on.

The CF boards have been good for me but my "playgroup" has been GREAT!

Best Wishes!

 

[anonymous]

That is probably unusual but still possible! I belong to a group like yours (we have been together for over 4 years now!) and while my child is the only one with CF there have been 2 others tested for it. I don't blame you for having your BS meter turned on! I imagine if you stick with the group you will get to know them well enough to find out what is really going on.

The CF boards have been good for me but my "playgroup" has been GREAT!

Best Wishes!

 

[anonymous]

That is probably unusual but still possible! I belong to a group like yours (we have been together for over 4 years now!) and while my child is the only one with CF there have been 2 others tested for it. I don't blame you for having your BS meter turned on! I imagine if you stick with the group you will get to know them well enough to find out what is really going on.

The CF boards have been good for me but my "playgroup" has been GREAT!

Best Wishes!

 

[anonymous]

Hi, Heather
Well I had the same thing happen to me with my son who was diagnosed on his 1st birthday. Ultrasound showed an echogenic bowel we saw a genetic counsler and was referred to a high risk specialist and they did a ultra sound every three weeks with my son. They told me that he proubly had swolled some blood when I had several weeks of bleeding and found out I had placenta previa. After several ultrasounds they said oh see it all cleared up and your son is fine just as we expected. My son suffered for a year with horrible reflex, poor weight gain which started at 8 months and on and on. My son was diagnosed Jan 2002 on his first birthday and my daughter who was getting ready to turn five two weeks after my son was diagnosed as well. I still have the papers they send me about the finding s and it stated that child could possibly have down syndrome or cystic fibrosis or may have swolled some blood but it cleared and child is fine. Yea right so I guess this finding as it may uncommon it happened to me and to this day it kills me.
Jeanine mom to Sydney 9 with cf, Trey 5 with cf and Abbey 2 w/out cf

 

[anonymous]

Hi, Heather
Well I had the same thing happen to me with my son who was diagnosed on his 1st birthday. Ultrasound showed an echogenic bowel we saw a genetic counsler and was referred to a high risk specialist and they did a ultra sound every three weeks with my son. They told me that he proubly had swolled some blood when I had several weeks of bleeding and found out I had placenta previa. After several ultrasounds they said oh see it all cleared up and your son is fine just as we expected. My son suffered for a year with horrible reflex, poor weight gain which started at 8 months and on and on. My son was diagnosed Jan 2002 on his first birthday and my daughter who was getting ready to turn five two weeks after my son was diagnosed as well. I still have the papers they send me about the finding s and it stated that child could possibly have down syndrome or cystic fibrosis or may have swolled some blood but it cleared and child is fine. Yea right so I guess this finding as it may uncommon it happened to me and to this day it kills me.
Jeanine mom to Sydney 9 with cf, Trey 5 with cf and Abbey 2 w/out cf

 

[anonymous]

Hi, Heather
Well I had the same thing happen to me with my son who was diagnosed on his 1st birthday. Ultrasound showed an echogenic bowel we saw a genetic counsler and was referred to a high risk specialist and they did a ultra sound every three weeks with my son. They told me that he proubly had swolled some blood when I had several weeks of bleeding and found out I had placenta previa. After several ultrasounds they said oh see it all cleared up and your son is fine just as we expected. My son suffered for a year with horrible reflex, poor weight gain which started at 8 months and on and on. My son was diagnosed Jan 2002 on his first birthday and my daughter who was getting ready to turn five two weeks after my son was diagnosed as well. I still have the papers they send me about the finding s and it stated that child could possibly have down syndrome or cystic fibrosis or may have swolled some blood but it cleared and child is fine. Yea right so I guess this finding as it may uncommon it happened to me and to this day it kills me.
Jeanine mom to Sydney 9 with cf, Trey 5 with cf and Abbey 2 w/out cf

 

[Ratatosk]

Our state began newborn screening for CF last January. There were 3 newborns that month in our city diagnosed wcf. I imagine a lot of people are misdiagnosed as having asthma, IBS, before they're diagnosed. DS was 2 1/2 when they began newborn screening and at the time was the youngest patient (only baby) that either clinic had seen in a LONG time.

 

[Ratatosk]

Our state began newborn screening for CF last January. There were 3 newborns that month in our city diagnosed wcf. I imagine a lot of people are misdiagnosed as having asthma, IBS, before they're diagnosed. DS was 2 1/2 when they began newborn screening and at the time was the youngest patient (only baby) that either clinic had seen in a LONG time.

 

[Ratatosk]

Our state began newborn screening for CF last January. There were 3 newborns that month in our city diagnosed wcf. I imagine a lot of people are misdiagnosed as having asthma, IBS, before they're diagnosed. DS was 2 1/2 when they began newborn screening and at the time was the youngest patient (only baby) that either clinic had seen in a LONG time.

 

[anonymous]

well i just think since it is the internet and anyone could be lying it is better to take people's word for it than assume people are lying. If someone irritates me i try to just ignore them. I think in the long run it is healthier for yourself if you just don't try to guess/interpret people's motives because so much of it is clouded by your own issues. In my experience (although i've never done it over the internet since i tend to trust everyone) it usually just ends up hurting everyone involved (including yourself.) I probably shouldn't be talking though since i have such a hard time avoiding this myself.

I've heard from ambry that with full panel mutation testing the carrier frequency increases to about 1/15 among caucasions. This is certainly not anywhere near 5/100 or 5/50 but it is something. If you are really concerned about this you should find out what the frequency of munchausen by proxy syndrome occurs at. I just can't imagine anyone who considers it "dramatic" to have a ill child to have anything less than munchausen. I could certainly see pretending they have an ill child over the internet is probably a launching pad for the full blown disorder. I could see maybe one of these indviduals making things up for attention but i have a hard time believing three would...? Why wouldn't any of them choose another disease? Maybe what you are noticing are parents who are very worried about their child's health and to them it feels like everyone is against them? Possibly the defensiveness from this attitude could set off your BS meter? maybe they are hypochondriacs?

who knows. good luck.