Re: 2 negative sweat tests, slow growth

[Guest guest]

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]

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]

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 ?????)