questions about CF??

[anonymous]

Hi,
I have two questions for you all! First of all.....my baby is getting the sweat test done today because of slow weight gain...if his problem was because of CF (MALABSORPTION) then wouldn't he have abnormal or smelly stools because of the fat being lost through the stool? His stools dont smell at all and they are normal stools for a breast fed baby.....second question.....my son has never tasted salty until last night, just a little on his head, no where else....can a baby's sweat still taste a little salty even if they dont have CF??
Thank you!!
Tonia

 

[ashton2005]

I know that salty tasting skin is a good sign of CF although even some babies that dont taste salty have CF.. As for the stools they could appear normal and he hve some other issues such as cough and i know some people who have no symptoms... Is their a history in your family.. I know that their isnt one in mine and my 6 mo has it.. come to find out my husband and i are carriers.. so with the failure to thrive is good indicator along with the slightly salty skin to get a test done so i think you are going in the right direction

christi
abbi 5 yo without
ashton 6 mo with

 

[JazzysMom]

You dont say how old your baby is, but that might have something to do with it. CF (although similiary in ways) can vary with the problems. Some have more lung involvement & less diestive so the stools arent the "typical" smelly, loose ones you are thinking of. Salty skin (especially at a young age) isnt a gaurantee either. Years ago before genetic blood testing was available the sweat test was the only real tool they had for dx. IMHO I think many people were misdiagnosed because of it. Some people dont fall into the categories like I said & the sweat test isnt always accurate. Many people have been dx with Asmtha & it actually was CF, but due to no GI problems it wasnt tested for. Good Luck & Let us know what happens!

 

[anonymous]

he is 10 weeks old.

 

[thelizardqueen]

I would also suggest getting a DNA test as well if the sweat test comes back negative. There is a such thing as a false negative, but not a false positive. Some CFers walk away with a normal reading, but are diagnosed again later on in life because they either show very few symptoms, or no symptoms at all. All CFers are different. Some don't have digestive issues, some do. Some have minor lung involvement, while some have severe involvement. It all depends on mutations, etc.

Good luck!

 

[Ratatosk]

Sometimes with newborns, teeny tiny babies they have a difficult time getting a good sweat sample. Don't know if that's what happened with DS, but he had his sweat test when he was 4 weeks old and it came back normal -- a 32. Genetic blood tests showed double delta f508. L

 

[JRPandTJP]

I would also suggest they do a genetic test...ask for the Guthrey panel test if possible as it is only a small heel stick as opposed to a large blood draw. This will show many mutations and you will know in 2 weeks usually. My son was also breastfed and had malabsorption and vitamin deficiencies. His stools were not smelly, but they were green and not the normal yellow/tan color. Like the other poster said, symptoms will vary, but he was never salty to me and never could get enough sweat for the test to be done. We lost precious time due to this fact and if we had the genetic test done at 7 weeks old, it would have saved us alot. You may want them to check his vitamin and protein levels and have them check his stool for fat loss. This way while you are waiting they can give you vitamins (if low in ADEK) to ensure he doesn't get deficiencies and if his protein is low you can start enzymes even while you are waiting results to see if it will help in digestion. They can also do a RAST test to see if he had a milk allergy...getting dairy out of your diet is challenging but it can be done if this is causing the slow weight gain.

Other possibilities for slow weight gain in breastfed babies can be researched with a good lactation consultant and/or a la leche league leader. Please don't feel it is your fault and if he ends up with CF don't give up breastfeeding him...it is still the best for them and you'll get lots of support here. Once they are on enzymes and catch up a bit, you can continue breastfeeding as normal. If he needs to catch up after diagnosis, you can supplement with techniques that don't require interuption to the breastfeeding relationship. Just check back with us and let us know...my thoughts and hope are with you that he is just a slow gainer and he will take off soon. Feel free to email me any time.

Warmly,
Jody
jody@meta4tech.com

 

[anonymous]

the guy at the lab said he "thought" the result was 15, which i read would be a normal number but he said to talk to my doc first, he will be in the office in an hour....so i will let you all know!! Thanks,
Tonia

 

[JRPandTJP]

I'm thinking about you...hoping it is negative and you can just work through it with a lactation consultant/la leche leader and/or peditrician. Let me know.

Warmly,
Jody

 

[anonymous]

It was negative! His score was 15........I am so relived.....thank you all so much for all of your support and help!! Hopefully we will get to the bottom of his weight problems very soon.....I just wish I knew what the problem is!
Thanks!!
Tonia