Symptoms in 2 month old?

L

lvisser

New member
Hi everyone...
My 2 month old son has been having difficulty eating and putting on weight for the last month. At his 2 month appointment he was diagnosed with failure to thrive and the doctor off-handedly mentioned CF. When I mentioned that it does run in my husbands family (unsure of my own) she decided to run some tests. Blood work came back normal (low iron) and we are waiting for the referal for the sweat test.
I am curious about what symptoms your LO's had before diagnosis.
E currently has FTT, clay poops, gas, difficulty putting on weight, distended belly and tiredness. However, I have licked him up and down and he really doesn't taste salty...
Any input or advice is appreciated!
 
L

lvisser

New member
Hi everyone...
My 2 month old son has been having difficulty eating and putting on weight for the last month. At his 2 month appointment he was diagnosed with failure to thrive and the doctor off-handedly mentioned CF. When I mentioned that it does run in my husbands family (unsure of my own) she decided to run some tests. Blood work came back normal (low iron) and we are waiting for the referal for the sweat test.
I am curious about what symptoms your LO's had before diagnosis.
E currently has FTT, clay poops, gas, difficulty putting on weight, distended belly and tiredness. However, I have licked him up and down and he really doesn't taste salty...
Any input or advice is appreciated!
 
R

Ratatosk

Administrator
Staff member
DS had very loose stools, distended tummy, stuffy nose, failure to thrive. Didn't sleep well -- woke up frequently, spit up, wouldn't eat much -- was full after only a couple ounces.
 
R

Ratatosk

Administrator
Staff member
DS had very loose stools, distended tummy, stuffy nose, failure to thrive. Didn't sleep well -- woke up frequently, spit up, wouldn't eat much -- was full after only a couple ounces.
 
L

lvisser

New member
Thats just like E... At one point he was taking only 14 ounces a day of formula. Now that he is up to 20ish his poops are getting to be very clay-y (thats not a word... oh well).
The crazy thing is, he sleeps SO well...
 
L

lvisser

New member
Thats just like E... At one point he was taking only 14 ounces a day of formula. Now that he is up to 20ish his poops are getting to be very clay-y (thats not a word... oh well).
The crazy thing is, he sleeps SO well...
 
J

Jessesmom

New member
What do you mean by 'blood work came back normal'? Did they do any genetic testing - check for any mutations? Sweat test results are an indicator, but not decisive! Get a referral to a CF centre.
 
J

Jessesmom

New member
What do you mean by 'blood work came back normal'? Did they do any genetic testing - check for any mutations? Sweat test results are an indicator, but not decisive! Get a referral to a CF centre.
 
L

lvisser

New member
they ran a panel on just your basics... cbc, hemoglobin etc.

we are waiting on the referral to the CF center... hopefully by the end of the week... i am def going to ask about the genetic testing...
 
L

lvisser

New member
they ran a panel on just your basics... cbc, hemoglobin etc.

we are waiting on the referral to the CF center... hopefully by the end of the week... i am def going to ask about the genetic testing...
 
J

JustDucky

New member
That would be your best bet, get the genetics screening, make sure it is the comprehensive full panel and not the 50 mutation panel (there are over 1600 mutations, Ambry has a test that screens for all of them as well as looks for novel mutations)....I am sure that your son will also get a sweat test first, they usually start with that and do the genetics afterwards.
I hope you get answers, if it is CF, then your son will get the proper treatment and start to feel better. If it isnt CF, then at least you'll know and you will have to look for other causes.
Sending good thoughts,
Jenn 40 w/CF
 
J

JustDucky

New member
That would be your best bet, get the genetics screening, make sure it is the comprehensive full panel and not the 50 mutation panel (there are over 1600 mutations, Ambry has a test that screens for all of them as well as looks for novel mutations)....I am sure that your son will also get a sweat test first, they usually start with that and do the genetics afterwards.
I hope you get answers, if it is CF, then your son will get the proper treatment and start to feel better. If it isnt CF, then at least you'll know and you will have to look for other causes.
Sending good thoughts,
Jenn 40 w/CF
 
A

Allansarmy

Guest
To answer some of your questions here.
My son was diagnosed at 4 months old. The pediatric doctor just happened to be the CF leading specialist in Dallas, Texas (Dr. Michael Brown). My son had trouble gaining wait, had bad gas, nothing sat very well as he threw things up, and had an occasional cough but not much at that time. I mean what baby doesn't have occasional gas and is fussy about certain formulas. But it still concerned the doctor enough, because my wife's sister had CF (nothing on my side of the family).
So he ordered a sweat test and it was positive, he ordered a second one a few weeks later and it too was positive. They did not offer Genotype testing 15 years ago, at least it wasn't looked upon as "important". Now with some new drugs coming out, I am getting him Genotyped DNA tested in about 3 weeks.
- Best of luck to you. If your child is positive, it will change your life and your child's life forever. As you will have to modify treatment plans, and just be prepared for when they hit their teenage years. But... I love my son and this disease does not rule over us. It makes us stronger in so many ways. <img title="Wink" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-wink.gif" alt="Wink" border="0" />
 
A

Allansarmy

Guest
To answer some of your questions here.
My son was diagnosed at 4 months old. The pediatric doctor just happened to be the CF leading specialist in Dallas, Texas (Dr. Michael Brown). My son had trouble gaining wait, had bad gas, nothing sat very well as he threw things up, and had an occasional cough but not much at that time. I mean what baby doesn't have occasional gas and is fussy about certain formulas. But it still concerned the doctor enough, because my wife's sister had CF (nothing on my side of the family).
So he ordered a sweat test and it was positive, he ordered a second one a few weeks later and it too was positive. They did not offer Genotype testing 15 years ago, at least it wasn't looked upon as "important". Now with some new drugs coming out, I am getting him Genotyped DNA tested in about 3 weeks.
- Best of luck to you. If your child is positive, it will change your life and your child's life forever. As you will have to modify treatment plans, and just be prepared for when they hit their teenage years. But... I love my son and this disease does not rule over us. It makes us stronger in so many ways. <img title="Wink" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-wink.gif" alt="Wink" border="0" />
 
S

samb

New member
In alberta they do genetic testing for cf as a baby. My daughter however lost alot more weight than they like them too before we left the hospital (born 9lbs 9oz) left the hospital (7lbs 3oz). She had very loose stools and usually bright green. She was breastfed but as I would be feeding her she would be pooping. She also would want to nurse for 2-3 hours lol Painful. We started supplementing with formula directed by the doctor and she still wasnt gaining as much weight as they would have liked. We found out her diagnosis at 5 weeks. Glad to have found out then <img src="i/expressions/face-icon-small-smile.gif" border="0">!
 
S

samb

New member
In alberta they do genetic testing for cf as a baby. My daughter however lost alot more weight than they like them too before we left the hospital (born 9lbs 9oz) left the hospital (7lbs 3oz). She had very loose stools and usually bright green. She was breastfed but as I would be feeding her she would be pooping. She also would want to nurse for 2-3 hours lol Painful. We started supplementing with formula directed by the doctor and she still wasnt gaining as much weight as they would have liked. We found out her diagnosis at 5 weeks. Glad to have found out then <img src="i/expressions/face-icon-small-smile.gif" border="0">!
 
H

Havoc

New member
Your son sounds exactly like what my parents described to me as my first weeks. I was Dx by sweat test at 6 months. Prior to that I was labeled as failure to thrive and had the same presentation as your son.
 
H

Havoc

New member
Your son sounds exactly like what my parents described to me as my first weeks. I was Dx by sweat test at 6 months. Prior to that I was labeled as failure to thrive and had the same presentation as your son.
 
M

mummy09

New member
My daughters first few weeks were like that as well eating and pooping at the same time, never content. Thank goodness for thenewborn screening test, she was diagnosed at 3 weeks.
 
M

mummy09

New member
My daughters first few weeks were like that as well eating and pooping at the same time, never content. Thank goodness for thenewborn screening test, she was diagnosed at 3 weeks.
 
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