symptoms of cf in toddler........

julie

New member
Some children who do have CF are not "salty tasting". Each personw with CF is different, so although a salty tasting child is traditionally a classic sign of CF; the absence of it should not lead you to believe that your child does not have it.

No harm can come by testing for CF, so If it is a concern of yours (and if I were in your shoes I would have the testing done-if for nothing else, to rule out CF) I would encourage a sweat test (although if your child doesn't taste salty this might not be the best option) and/or an extended panel CF mutation test (quest diagnostics is the leader in the industry for the Expanded test. They are able to detect over 1000 known CF mutations currently).

It's amazing how many doctors/pediatricians "aren't concerned it's CF". I'd say 9/10 doctors think that way. And it's tragic because they are usually wrong about it. There is still so little education about CF out there, even for medical staff. It is frustrating and sad, but it requires that a parent step up and sometimes demand certain testing and studies. Many parents on this site can share their stories of how their pedi.'s clearly dobuted that the child had CF, and guess what, they are here now because low and behold the child was diagnosed with CF after much pushing by the parent(s). A delay in the proper diagnosis ovbiously means a delay in appropriate treatment for the child/person and that can sometimes have life altering consequences.

I wish you the best of luck and please let us know if you get the testing done and what you find out! We're here to help.
 

julie

New member
Some children who do have CF are not "salty tasting". Each personw with CF is different, so although a salty tasting child is traditionally a classic sign of CF; the absence of it should not lead you to believe that your child does not have it.

No harm can come by testing for CF, so If it is a concern of yours (and if I were in your shoes I would have the testing done-if for nothing else, to rule out CF) I would encourage a sweat test (although if your child doesn't taste salty this might not be the best option) and/or an extended panel CF mutation test (quest diagnostics is the leader in the industry for the Expanded test. They are able to detect over 1000 known CF mutations currently).

It's amazing how many doctors/pediatricians "aren't concerned it's CF". I'd say 9/10 doctors think that way. And it's tragic because they are usually wrong about it. There is still so little education about CF out there, even for medical staff. It is frustrating and sad, but it requires that a parent step up and sometimes demand certain testing and studies. Many parents on this site can share their stories of how their pedi.'s clearly dobuted that the child had CF, and guess what, they are here now because low and behold the child was diagnosed with CF after much pushing by the parent(s). A delay in the proper diagnosis ovbiously means a delay in appropriate treatment for the child/person and that can sometimes have life altering consequences.

I wish you the best of luck and please let us know if you get the testing done and what you find out! We're here to help.
 

rosie

New member
Thanks to all who have replied..I'll keep checking in to see if there are any more words of wisdom and I will of course check back with you to let you know what the final diagnosis is...I'm praying at most it would be the need for growth hormone. I guess the absence of the salty brow is no reassurance that he doesn't have cf...I was sort of trying to talk myself out of the possibilty because he's not always anymore salty than any of my other kids.

good luck to all and thanks again for the replies.
 

rosie

New member
Thanks to all who have replied..I'll keep checking in to see if there are any more words of wisdom and I will of course check back with you to let you know what the final diagnosis is...I'm praying at most it would be the need for growth hormone. I guess the absence of the salty brow is no reassurance that he doesn't have cf...I was sort of trying to talk myself out of the possibilty because he's not always anymore salty than any of my other kids.

good luck to all and thanks again for the replies.
 

anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jane</b></i>

Hi Rosie,

Definately check for saltiness, my son was also diagnosed that way. We were so fortunate to have a pediatrian who was aware of that symptom. Has anyone checked for food allergies?

Good luck and let us know.</end quote></div>
 

anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jane</b></i>

Hi Rosie,

Definately check for saltiness, my son was also diagnosed that way. We were so fortunate to have a pediatrian who was aware of that symptom. Has anyone checked for food allergies?

Good luck and let us know.</end quote></div>
 

anonymous

New member
Hi Rosie - My son Jason, 8, was diagnosed at 18 mos. He didn't have the typical issues and as a result he was mis diagnosed many times. The two classic things that he did have were sometimes salty skin and he always pruned up in the bath very quickly. He def. had stool issues also - they were frequent, bulky, foul and greasy.

I would think just process of elimination would be helpful to you. Wait and see seems like it would be a tough thing to do. Ruling out allergies and other gastro issues would be a great start. Does he appear to have any malabsorption problems? Like a bulging belly? This can be a sign of CF as well as other Gastro issues. I would think the gastro already tested for this? Has the Dr. had you do any stool collections for the lab?

Wishing you the best! It can be so frustrating getting to an answer. We are here if you need us.

Ooops I forgot to log in.....

Jo Ann, Mom of Jason - 8 w/cf and Tommy soon to be 11 - carrier
 

anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jane</b></i>

Hi Rosie,

Definately check for saltiness, my son was also diagnosed that way. We were so fortunate to have a pediatrian who was aware of that symptom. Has anyone checked for food allergies?

Good luck and let us know.</end quote></div>
 

anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jane</b></i>

Hi Rosie,

Definately check for saltiness, my son was also diagnosed that way. We were so fortunate to have a pediatrian who was aware of that symptom. Has anyone checked for food allergies?

Good luck and let us know.</end quote></div>
 

anonymous

New member
Rosie,
My daughter was 14 months at dx. The test is so simple. If you have any concerns regarding what could be symptoms of CF, push to have him tested. The sooner the better. And not all CF mutations cause the salty skin.
mom to two CF daughters, 8 years old and 6 years old.
 
M

mneville

Guest
My son Aidan (now 23 months old) was diagnosed at 8 days old due to
NJ newborn screening. He was already showing GI symptoms as he was
always hungry and constantly going to the bathroom, not normal
stools. He never tasted salty in the beginning but now he does! On
a positive note, he is now doing awesome! Over 34 pounds and
thriving....<br>
<br>
Megan, mom to Aidan Double Delta
 

anonymous

New member
hi Rosie,

my daughter was found cf when she was 5 months...now she is 7 yr old....my daughter gets tired very soon....i give her lots of protein n hi-calories...her weight is 18 kg n her height is 104cm...i think its short accordin to her age...she gets hospitalised after every 1 or 2 months for anti-biotics course which last for almost 15 days...i want to know does ur child gets hospitalise too...n wat medicine u giv to ur child..?
i live in UAE...but there is no new therapy for this diseas here...is there any new research on this..?
 

CJ

New member
hi rosie i guess they must be able 2test with accuracy? ask doc to
start him/her on some form of ensymes like creon. some good news i
was born nearly wieghting 10bls and mine there after was slow
2increase. but im 24 and top the scales at 75kgs.the most important
fing is to keep your bundle of joy chest clear. best wishes for the
future cj xxx
 

anonymous

New member
I am 18 years old and my doctors did not Pick up my CF till I was 16! I have saltie skin but my sweat test came back normal! I then had a gene test and I had 1 F508 gene so the doctors just said I have CF becuase I have all the issues of cf and they told me there is about 100 genes that can not be tested for yet.

Now I am getting CFRD. Peeing allot and dranking allot of water and very sleepy. My blood suger was 215 and 180 last week. I take enzymes and do chest PT and lots of nebulizers and Pulozyme and much more meds!

I have allot of issues with being sleepy. To the pont of not being able to go to school!

I have a web page at www.caringbridge.com/visit/anikaashley1
Thank you <>< Anika Ashley teen with CF
 
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