help alleviate my irrational fears!!

K

ktsmom

New member
Aaahhh yes, the licking. I remember it well. Did it from a Thursday morning (positive sweat test, 'preliminary' result) to a Monday morning (the 'real' thing; positive again). Katy caught on pretty quick - "Mommy, are you kissing me...or LICKING me???" Lick her, lick myself for comparison. Rinse and repeat.

I have no real advice, but for these next few days find something to distract yourself, like a good book that you just can't put down! I also recommend NOT surfing the internet for CF stuff (I drove myself absolutely nuts with this). There is no sense in it right now, and it can't answer the question that you really want to know.

Hang in there! Crossing fingers!

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
 
R

ReneeP

New member
The truth is that there is nothing anyone can say to make this process any easier for you. Only time and real answers will do that. I just wanted to tell you to be proud of yourself for standing up for your child and doing the right thing even though you have other people who may think you're crazy. Believe me, that's something I understand all too well. I have two daughters with CF. There had been no family history in either family and I had never even heard of CF. My daughter was fine until about 9 months and then started getting sick and wasn't gaining weight. For the next 2 years things went downhill fast and I took her to every dr within a 60 mile radius. I got no help. I read medical book after medical book and finally discovered CF and told my friends and family what I thought. EVERYONE TOLD ME I WAS NUTS! They kept saying "look at all the drs she's been to and all the times she's been in the hospital... if she had Cystic Fibrosis someone would have found it". Even when I finally got the nerve to take her to the dr and insist on the test, the dr told me I was overreacting and there was no way she had CF. Well, everyone was wrong. And she suffered needlessly for 2 1/2 years. If we had only known from the beginning, she'd have been so much healthier.

All that being said, remember that 99% of all sweat tests are negative. The odds are overwhelmingly in your favor. But IF your child does have CF you can prevent so much suffering by knowing it now instead of later. I applaude you for going with your gut and doing what's best for your child. And if the test is negative, GREAT! Don't feel silly for pushing for it. Be proud that you are a parent who will stand up for her child!
 
R

ReneeP

New member
The truth is that there is nothing anyone can say to make this process any easier for you. Only time and real answers will do that. I just wanted to tell you to be proud of yourself for standing up for your child and doing the right thing even though you have other people who may think you're crazy. Believe me, that's something I understand all too well. I have two daughters with CF. There had been no family history in either family and I had never even heard of CF. My daughter was fine until about 9 months and then started getting sick and wasn't gaining weight. For the next 2 years things went downhill fast and I took her to every dr within a 60 mile radius. I got no help. I read medical book after medical book and finally discovered CF and told my friends and family what I thought. EVERYONE TOLD ME I WAS NUTS! They kept saying "look at all the drs she's been to and all the times she's been in the hospital... if she had Cystic Fibrosis someone would have found it". Even when I finally got the nerve to take her to the dr and insist on the test, the dr told me I was overreacting and there was no way she had CF. Well, everyone was wrong. And she suffered needlessly for 2 1/2 years. If we had only known from the beginning, she'd have been so much healthier.

All that being said, remember that 99% of all sweat tests are negative. The odds are overwhelmingly in your favor. But IF your child does have CF you can prevent so much suffering by knowing it now instead of later. I applaude you for going with your gut and doing what's best for your child. And if the test is negative, GREAT! Don't feel silly for pushing for it. Be proud that you are a parent who will stand up for her child!
 
R

ReneeP

New member
The truth is that there is nothing anyone can say to make this process any easier for you. Only time and real answers will do that. I just wanted to tell you to be proud of yourself for standing up for your child and doing the right thing even though you have other people who may think you're crazy. Believe me, that's something I understand all too well. I have two daughters with CF. There had been no family history in either family and I had never even heard of CF. My daughter was fine until about 9 months and then started getting sick and wasn't gaining weight. For the next 2 years things went downhill fast and I took her to every dr within a 60 mile radius. I got no help. I read medical book after medical book and finally discovered CF and told my friends and family what I thought. EVERYONE TOLD ME I WAS NUTS! They kept saying "look at all the drs she's been to and all the times she's been in the hospital... if she had Cystic Fibrosis someone would have found it". Even when I finally got the nerve to take her to the dr and insist on the test, the dr told me I was overreacting and there was no way she had CF. Well, everyone was wrong. And she suffered needlessly for 2 1/2 years. If we had only known from the beginning, she'd have been so much healthier.

All that being said, remember that 99% of all sweat tests are negative. The odds are overwhelmingly in your favor. But IF your child does have CF you can prevent so much suffering by knowing it now instead of later. I applaude you for going with your gut and doing what's best for your child. And if the test is negative, GREAT! Don't feel silly for pushing for it. Be proud that you are a parent who will stand up for her child!
 
J

JRPandTJP

New member
Sure thing...visit my site www.cfnutrition4life.com or click directly to the article section <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfnutrition4life.com/site/articles.php?cat_id=10">http://www.cfnutrition4life.co...articles.php?cat_id=10</a> - it is the last one I believe. The site hasn't officially been launched but it is complete as far as the information.

The nutrition side is still very much in skeleton form (no content up yet) so excuse the dust as they say.

Hope this helps!!

Jody
 
J

JRPandTJP

New member
Sure thing...visit my site www.cfnutrition4life.com or click directly to the article section <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfnutrition4life.com/site/articles.php?cat_id=10">http://www.cfnutrition4life.co...articles.php?cat_id=10</a> - it is the last one I believe. The site hasn't officially been launched but it is complete as far as the information.

The nutrition side is still very much in skeleton form (no content up yet) so excuse the dust as they say.

Hope this helps!!

Jody
 
J

JRPandTJP

New member
Sure thing...visit my site www.cfnutrition4life.com or click directly to the article section <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfnutrition4life.com/site/articles.php?cat_id=10">http://www.cfnutrition4life.co...articles.php?cat_id=10</a> - it is the last one I believe. The site hasn't officially been launched but it is complete as far as the information.

The nutrition side is still very much in skeleton form (no content up yet) so excuse the dust as they say.

Hope this helps!!

Jody
 
N

np2

New member
Hi Everyone,

Well i was trying to follow ktsmom's advice until last night when my son had a poop in which there was a gray, colorless stain that soaked through to the back side of the diaper. Also the poo was really slick and just peeled off the diaper and my son. Underneath the poo was the gray stain. My DH thinks that this kind of "oily" poo is normal considering he ate 3-4 tbs of gaucomole yesterdaty so I called a ped nurse at our doc's clinic to ask if i should be concerned by this (i did not tell her i was worried about the possibility of CF so as not to "bias" her which my DH requested.) She asked if it happened often and i said this was the first time i noticed it so she said not to worry since avocados have lots of oil in them. Do you guys think it is ok for healthy babes to sometimes have really oily poos? If the sweat test is negative should we make further attempts to figure out the cause of his oily poo or just relax and not worry anymore?? Thanks in advance everyone.
 
N

np2

New member
Hi Everyone,

Well i was trying to follow ktsmom's advice until last night when my son had a poop in which there was a gray, colorless stain that soaked through to the back side of the diaper. Also the poo was really slick and just peeled off the diaper and my son. Underneath the poo was the gray stain. My DH thinks that this kind of "oily" poo is normal considering he ate 3-4 tbs of gaucomole yesterdaty so I called a ped nurse at our doc's clinic to ask if i should be concerned by this (i did not tell her i was worried about the possibility of CF so as not to "bias" her which my DH requested.) She asked if it happened often and i said this was the first time i noticed it so she said not to worry since avocados have lots of oil in them. Do you guys think it is ok for healthy babes to sometimes have really oily poos? If the sweat test is negative should we make further attempts to figure out the cause of his oily poo or just relax and not worry anymore?? Thanks in advance everyone.
 
N

np2

New member
Hi Everyone,

Well i was trying to follow ktsmom's advice until last night when my son had a poop in which there was a gray, colorless stain that soaked through to the back side of the diaper. Also the poo was really slick and just peeled off the diaper and my son. Underneath the poo was the gray stain. My DH thinks that this kind of "oily" poo is normal considering he ate 3-4 tbs of gaucomole yesterdaty so I called a ped nurse at our doc's clinic to ask if i should be concerned by this (i did not tell her i was worried about the possibility of CF so as not to "bias" her which my DH requested.) She asked if it happened often and i said this was the first time i noticed it so she said not to worry since avocados have lots of oil in them. Do you guys think it is ok for healthy babes to sometimes have really oily poos? If the sweat test is negative should we make further attempts to figure out the cause of his oily poo or just relax and not worry anymore?? Thanks in advance everyone.
 
R

Ratatosk

Administrator
Staff member
For your own piece of mind, I'd ask for genetic blood testing. Our son was diagnosed shortly after he was born because of a bowel obstruction from meconium illeus. He had a sweat test, which he passed with flying colors. A normal 32. Blood test results showed cf.
 
R

Ratatosk

Administrator
Staff member
For your own piece of mind, I'd ask for genetic blood testing. Our son was diagnosed shortly after he was born because of a bowel obstruction from meconium illeus. He had a sweat test, which he passed with flying colors. A normal 32. Blood test results showed cf.
 
R

Ratatosk

Administrator
Staff member
For your own piece of mind, I'd ask for genetic blood testing. Our son was diagnosed shortly after he was born because of a bowel obstruction from meconium illeus. He had a sweat test, which he passed with flying colors. A normal 32. Blood test results showed cf.
 
A

annonymous

New member
The American Academy of Pediatrics handbook states that it is actually common for babies to malabsorb, although it usually does not last more than a couple of days at a time. Most parents probably don't even notice if it happens (unless they are aware of the symptoms and pay close attention to their child's poop). Baby poop can sometimes be weird. Period. Hoping that you're baby has anegative sweat test so that your mind can rest. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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