Re: 2 negative sweat tests, slow growth

[Guest guest]

-I would get the genetics test...

take care,

Jen

-- In cfparents , " sarbri2002 "

wrote:

> le,

> I have a daughter who is almost 3 (will be in Jauary) with CF and

a

> son who is 5 1/2. I too have concerns about my son. HE has had

2

> negative sweat tests but he gets sick so often and has bronchitis

> quite often and has had phenmonia once. Our pediatrician just

> diagnosed him with Asthma but I know CF hs been confused with

ASthma

> before. I asked our Cf doctor about getting him genetically

tested.

> My Cf doctor said that it is very rare for a person to test

negative

> on a sweat test but still have CF.. he said those people with low

> sodium levels but still having CF generally do not have a lot of

> respiratory problems early in life..so he doesn't think my son

needs

> to be genetically tested. I am not sure how much I trust this.

>

> I hope your child's test comes back normal!!!!

> Good Luck!

> mom to Hannah 3 wcf and Tommy 5 1/2 w/asthma

>

>

> > Hi,

> >

> > I've never posted on here before, but I have done a lot of

reading

> > and have really benefitted from the conversations in this group.

I

> > am a mother of five children, including 4-year Ambrose wcf.

> >

> > I am writing now because I am looking for insight and

information.

> > My son , who is 15 months old, has had two negative sweat

> > tests (both done at approved cf centers). One was done when he

was

> > four weeks old, and the second was done when he was 8 months old,

> > because he was not growing well and drs suspected the first

result

> > was a false negative. At that point, he was below the chart for

> both

> > height and weight, and continued dropping (not losing weight, but

> > falling farther off the chart) for a couple of months. After the

> > second negative result, we trusted the results and tested him for

> > other chronic illnesses and infection: all negative. So we just

> > decided to encourage a high-calorie diet and see how he did.

> >

> > Well, last week, at his regular check up, we found he was back on

> the

> > chart for his height (20th percentile) but just below normal for

> his

> > weight. I should mention that I come from a family of small

> people.

> > My husband is average height and weight, but I am 5'1 " and weigh

> > about 110 lbs (when I'm not pg LOL). has no respiratory

> > symptoms.

> >

> > At the dr's suggestion, we are now scheduling a genetic test and

I

> > wonder if anyone can give some insight about the accuracy of

sweat

> > tests vs genetic testing. Ambrose has 2 delta F508 so the cf

> center

> > said it would be easy to test . Also, what can anyone

tell

> me

> > about cf carriers presenting with cf-like symptoms? I know very

> > little about this.

> >

> > Thank you all for any help or info you can provide. I truly

> > appreciate it.

> >

> > le

> > (homeschooling mom to Kateri, 7yo wocf; Eamon, 6yo wocf; Ambrose,

> 4yo

> > wcf; tte, 3yo wocf, and , 15 months and ?????)

[Guest guest]

-I would get the genetics test...

take care,

Jen

-- In cfparents , " sarbri2002 "

wrote:

> le,

> I have a daughter who is almost 3 (will be in Jauary) with CF and

a

> son who is 5 1/2. I too have concerns about my son. HE has had

2

> negative sweat tests but he gets sick so often and has bronchitis

> quite often and has had phenmonia once. Our pediatrician just

> diagnosed him with Asthma but I know CF hs been confused with

ASthma

> before. I asked our Cf doctor about getting him genetically

tested.

> My Cf doctor said that it is very rare for a person to test

negative

> on a sweat test but still have CF.. he said those people with low

> sodium levels but still having CF generally do not have a lot of

> respiratory problems early in life..so he doesn't think my son

needs

> to be genetically tested. I am not sure how much I trust this.

>

> I hope your child's test comes back normal!!!!

> Good Luck!

> mom to Hannah 3 wcf and Tommy 5 1/2 w/asthma

>

>

> > Hi,

> >

> > I've never posted on here before, but I have done a lot of

reading

> > and have really benefitted from the conversations in this group.

I

> > am a mother of five children, including 4-year Ambrose wcf.

> >

> > I am writing now because I am looking for insight and

information.

> > My son , who is 15 months old, has had two negative sweat

> > tests (both done at approved cf centers). One was done when he

was

> > four weeks old, and the second was done when he was 8 months old,

> > because he was not growing well and drs suspected the first

result

> > was a false negative. At that point, he was below the chart for

> both

> > height and weight, and continued dropping (not losing weight, but

> > falling farther off the chart) for a couple of months. After the

> > second negative result, we trusted the results and tested him for

> > other chronic illnesses and infection: all negative. So we just

> > decided to encourage a high-calorie diet and see how he did.

> >

> > Well, last week, at his regular check up, we found he was back on

> the

> > chart for his height (20th percentile) but just below normal for

> his

> > weight. I should mention that I come from a family of small

> people.

> > My husband is average height and weight, but I am 5'1 " and weigh

> > about 110 lbs (when I'm not pg LOL). has no respiratory

> > symptoms.

> >

> > At the dr's suggestion, we are now scheduling a genetic test and

I

> > wonder if anyone can give some insight about the accuracy of

sweat

> > tests vs genetic testing. Ambrose has 2 delta F508 so the cf

> center

> > said it would be easy to test . Also, what can anyone

tell

> me

> > about cf carriers presenting with cf-like symptoms? I know very

> > little about this.

> >

> > Thank you all for any help or info you can provide. I truly

> > appreciate it.

> >

> > le

> > (homeschooling mom to Kateri, 7yo wocf; Eamon, 6yo wocf; Ambrose,

> 4yo

> > wcf; tte, 3yo wocf, and , 15 months and ?????)