symptomatic carrier or cf or nerotic mom?

[jbrandonAW]

**Update**
So we took her in this morning. The doctor agreed that based on her symptoms she needed further testing. She said that even if she showed NO other symptoms but the MRSA lung infection @ 6 months that it would be reason enough, b/c fact is healthy people just don't catch MRSA in the lungs. She also said that the cough is very different from and asthma/allergy cough. She did however start her on singular and told us we could up her dose of zyrtec if needed (don't worry its offbrand lol). She does also want us to follow up with allergy tested, but basically said that its in the CF clinics hands now. Basically she will go to see my doctor since she sees both peds & adults.

I have spoken to my CF clinic and they agree that her symptoms sound suspicious. The nurse noted it and it going to try to hold a slot open, but she can't book it until she gets the insurance referral. However it only takes 3 days, so I should have an appointment this week. She also gave me hope that the Ambry test would be done and should be 100% covered by insurance. She also wants to run another sweat test.

Thats all the update I have for now. She was 25lbs 11oz today and almost 36 inches tall. That no real change in weight from the last visit 2 months ago. Ill update this thread again when I know more. Prayers are appreciated. I never knew how hard this was. Its always my health..but now its my daughters and I'm sooo worried!
__________________________________
Ok so my daughter is 2. I am the one with CF, so I know she has atleast ONE gene. She has had a negative sweat test, it wasn't even borderline (8 on one arm, 9 on the other). My husband was tested for the 100 most common mutations and it was negative. HOWEVER my daughter is a different story.

At 6 months she was dx'd as failure to thrive. She was 4.11 at birth and at 1 year was only 13 lbs. Now she is 24lbs and 35inches tall. I have been feeding her supplements since she was 9 months old.

She has very crazy BM's. One day she is constipated and the next she has the runs. Now its not like what my poo looks like when I don't take my pills, BUT its runny nontheless.

She has a cough, yes a constant cough. I am constantly taking her in b/c she SOUNDS sick, but nothing. They said its "allergies", but she has been on allergy meds for 3 months and nothing. I have an appointment for tomorrow for her to see about asthma and getting singular.She also had MRSA lung infection at 6 months old.Its a wet chunky cough.

I know everyone thinks I am just over bearing, but I feel so insecure about her health. And maybe I am reading to much into her and this is normal 2 year old. Is there a such thing as a symptomatic carrier and what does that even mean???

 

[jbrandonAW]

**Update**
So we took her in this morning. The doctor agreed that based on her symptoms she needed further testing. She said that even if she showed NO other symptoms but the MRSA lung infection @ 6 months that it would be reason enough, b/c fact is healthy people just don't catch MRSA in the lungs. She also said that the cough is very different from and asthma/allergy cough. She did however start her on singular and told us we could up her dose of zyrtec if needed (don't worry its offbrand lol). She does also want us to follow up with allergy tested, but basically said that its in the CF clinics hands now. Basically she will go to see my doctor since she sees both peds & adults.

I have spoken to my CF clinic and they agree that her symptoms sound suspicious. The nurse noted it and it going to try to hold a slot open, but she can't book it until she gets the insurance referral. However it only takes 3 days, so I should have an appointment this week. She also gave me hope that the Ambry test would be done and should be 100% covered by insurance. She also wants to run another sweat test.

Thats all the update I have for now. She was 25lbs 11oz today and almost 36 inches tall. That no real change in weight from the last visit 2 months ago. Ill update this thread again when I know more. Prayers are appreciated. I never knew how hard this was. Its always my health..but now its my daughters and I'm sooo worried!
__________________________________
Ok so my daughter is 2. I am the one with CF, so I know she has atleast ONE gene. She has had a negative sweat test, it wasn't even borderline (8 on one arm, 9 on the other). My husband was tested for the 100 most common mutations and it was negative. HOWEVER my daughter is a different story.

At 6 months she was dx'd as failure to thrive. She was 4.11 at birth and at 1 year was only 13 lbs. Now she is 24lbs and 35inches tall. I have been feeding her supplements since she was 9 months old.

She has very crazy BM's. One day she is constipated and the next she has the runs. Now its not like what my poo looks like when I don't take my pills, BUT its runny nontheless.

She has a cough, yes a constant cough. I am constantly taking her in b/c she SOUNDS sick, but nothing. They said its "allergies", but she has been on allergy meds for 3 months and nothing. I have an appointment for tomorrow for her to see about asthma and getting singular.She also had MRSA lung infection at 6 months old.Its a wet chunky cough.

I know everyone thinks I am just over bearing, but I feel so insecure about her health. And maybe I am reading to much into her and this is normal 2 year old. Is there a such thing as a symptomatic carrier and what does that even mean???

 

[jbrandonAW]

**Update**
<br /> So we took her in this morning. The doctor agreed that based on her symptoms she needed further testing. She said that even if she showed NO other symptoms but the MRSA lung infection @ 6 months that it would be reason enough, b/c fact is healthy people just don't catch MRSA in the lungs. She also said that the cough is very different from and asthma/allergy cough. She did however start her on singular and told us we could up her dose of zyrtec if needed (don't worry its offbrand lol). She does also want us to follow up with allergy tested, but basically said that its in the CF clinics hands now. Basically she will go to see my doctor since she sees both peds & adults.
<br />
<br />I have spoken to my CF clinic and they agree that her symptoms sound suspicious. The nurse noted it and it going to try to hold a slot open, but she can't book it until she gets the insurance referral. However it only takes 3 days, so I should have an appointment this week. She also gave me hope that the Ambry test would be done and should be 100% covered by insurance. She also wants to run another sweat test.
<br />
<br />Thats all the update I have for now. She was 25lbs 11oz today and almost 36 inches tall. That no real change in weight from the last visit 2 months ago. Ill update this thread again when I know more. Prayers are appreciated. I never knew how hard this was. Its always my health..but now its my daughters and I'm sooo worried!
<br />__________________________________
<br />Ok so my daughter is 2. I am the one with CF, so I know she has atleast ONE gene. She has had a negative sweat test, it wasn't even borderline (8 on one arm, 9 on the other). My husband was tested for the 100 most common mutations and it was negative. HOWEVER my daughter is a different story.
<br />
<br />At 6 months she was dx'd as failure to thrive. She was 4.11 at birth and at 1 year was only 13 lbs. Now she is 24lbs and 35inches tall. I have been feeding her supplements since she was 9 months old.
<br />
<br />She has very crazy BM's. One day she is constipated and the next she has the runs. Now its not like what my poo looks like when I don't take my pills, BUT its runny nontheless.
<br />
<br />She has a cough, yes a constant cough. I am constantly taking her in b/c she SOUNDS sick, but nothing. They said its "allergies", but she has been on allergy meds for 3 months and nothing. I have an appointment for tomorrow for her to see about asthma and getting singular.She also had MRSA lung infection at 6 months old.Its a wet chunky cough.
<br />
<br />I know everyone thinks I am just over bearing, but I feel so insecure about her health. And maybe I am reading to much into her and this is normal 2 year old. Is there a such thing as a symptomatic carrier and what does that even mean???

 

[JORDYSMOM]

Jessica, I can't believe your daughter hasn't had the full-panel genetic test. I think there are sufficient symptoms to warrant it even without the fact that you have CF. Have you talked to your clinic about this?

I'd get her tested immediately.

Stacey

 

[JORDYSMOM]

Jessica, I can't believe your daughter hasn't had the full-panel genetic test. I think there are sufficient symptoms to warrant it even without the fact that you have CF. Have you talked to your clinic about this?

I'd get her tested immediately.

Stacey

 

[JORDYSMOM]

Jessica, I can't believe your daughter hasn't had the full-panel genetic test. I think there are sufficient symptoms to warrant it even without the fact that you have CF. Have you talked to your clinic about this?
<br />
<br />I'd get her tested immediately.
<br />
<br />Stacey

 

[ehtansky21]

It definitely wouldn't hurt to do the Ambry test...I take that back, it could hurt the finances. But it would help take away your anxieties. Yes, carriers can demonstrate some of the symptoms of CF. I am a carrier and I definitely have some digestive issues. My only lung issues, is asthmatic symptoms upon exercise.
The doctor you see tomorrow could start the process of doing the Ambry test. You have to have health insurance approval before Ambry will start the test. Once we got the approval, I got an Ambry kit from our CF center and took Caleb in for a blood draw.
Good luck my dear!!! I'll be praying for you and your anxieties<img src="i/expressions/face-icon-small-smile.gif" border="0">

blessings,
missa

 

[ehtansky21]

It definitely wouldn't hurt to do the Ambry test...I take that back, it could hurt the finances. But it would help take away your anxieties. Yes, carriers can demonstrate some of the symptoms of CF. I am a carrier and I definitely have some digestive issues. My only lung issues, is asthmatic symptoms upon exercise.
The doctor you see tomorrow could start the process of doing the Ambry test. You have to have health insurance approval before Ambry will start the test. Once we got the approval, I got an Ambry kit from our CF center and took Caleb in for a blood draw.
Good luck my dear!!! I'll be praying for you and your anxieties<img src="i/expressions/face-icon-small-smile.gif" border="0">

blessings,
missa

 

[ehtansky21]

It definitely wouldn't hurt to do the Ambry test...I take that back, it could hurt the finances. But it would help take away your anxieties. Yes, carriers can demonstrate some of the symptoms of CF. I am a carrier and I definitely have some digestive issues. My only lung issues, is asthmatic symptoms upon exercise.
<br />The doctor you see tomorrow could start the process of doing the Ambry test. You have to have health insurance approval before Ambry will start the test. Once we got the approval, I got an Ambry kit from our CF center and took Caleb in for a blood draw.
<br />Good luck my dear!!! I'll be praying for you and your anxieties<img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />blessings,
<br />missa

 

[jbrandonAW]

O wow, so my insurance should cover the ambry? Honestly I dont think I quit thinking about it until its done. My clinic thinks my worries should be eased by the negative sweat test... hum no.

I guess I will mention Ambry to my daughter, so atleast see what we need to do to get it.

 

[jbrandonAW]

O wow, so my insurance should cover the ambry? Honestly I dont think I quit thinking about it until its done. My clinic thinks my worries should be eased by the negative sweat test... hum no.

I guess I will mention Ambry to my daughter, so atleast see what we need to do to get it.

 

[jbrandonAW]

O wow, so my insurance should cover the ambry? Honestly I dont think I quit thinking about it until its done. My clinic thinks my worries should be eased by the negative sweat test... hum no.
<br />
<br />I guess I will mention Ambry to my daughter, so atleast see what we need to do to get it.

 

[momoffour1cf]

If you are being told that she has allergies and she not responding to typical allergy meds, I'd take her to an allergist. Skin tests aren't fun but they can give you a lot of information. RAST testing(blood test) is good too, but not as reliable. A lot of allergist won't treat very young kids with allergy shoots. But there are new - still not FDA approved- sublingual allergy drops that are available if you find the right doc. They have made a tremendous difference in my daughter's (the one with CF) seasonal allergy symptoms and her sensitivity has decreased to her original allergens.

You might also ask the allergist about celiac disease- a "wheat allergy" that can cause diarrhea. It can also cause malabsorption of fats and FTT in infants. Just a thought........


We have tried Singulair twice with my daughter - most recently just a month or so ago - and it caused major personality changes - aggression, depression, hyper with sleep problems and night terrors, just to name a few. Docs told me I was crazy when I took her of the first time a few years ago. But once off the change was as dramatic as it was when we just re-tried it.

 

[momoffour1cf]

If you are being told that she has allergies and she not responding to typical allergy meds, I'd take her to an allergist. Skin tests aren't fun but they can give you a lot of information. RAST testing(blood test) is good too, but not as reliable. A lot of allergist won't treat very young kids with allergy shoots. But there are new - still not FDA approved- sublingual allergy drops that are available if you find the right doc. They have made a tremendous difference in my daughter's (the one with CF) seasonal allergy symptoms and her sensitivity has decreased to her original allergens.

You might also ask the allergist about celiac disease- a "wheat allergy" that can cause diarrhea. It can also cause malabsorption of fats and FTT in infants. Just a thought........


We have tried Singulair twice with my daughter - most recently just a month or so ago - and it caused major personality changes - aggression, depression, hyper with sleep problems and night terrors, just to name a few. Docs told me I was crazy when I took her of the first time a few years ago. But once off the change was as dramatic as it was when we just re-tried it.

 

[momoffour1cf]

If you are being told that she has allergies and she not responding to typical allergy meds, I'd take her to an allergist. Skin tests aren't fun but they can give you a lot of information. RAST testing(blood test) is good too, but not as reliable. A lot of allergist won't treat very young kids with allergy shoots. But there are new - still not FDA approved- sublingual allergy drops that are available if you find the right doc. They have made a tremendous difference in my daughter's (the one with CF) seasonal allergy symptoms and her sensitivity has decreased to her original allergens.
<br />
<br />You might also ask the allergist about celiac disease- a "wheat allergy" that can cause diarrhea. It can also cause malabsorption of fats and FTT in infants. Just a thought........
<br />
<br />
<br />We have tried Singulair twice with my daughter - most recently just a month or so ago - and it caused major personality changes - aggression, depression, hyper with sleep problems and night terrors, just to name a few. Docs told me I was crazy when I took her of the first time a few years ago. But once off the change was as dramatic as it was when we just re-tried it.

 

[hmw]

I wonder about a couple things.
How old was she when she had her sweat test?

And MRSA... that is a serious infection for an infant. Has she had repeated sputum cultures since then? History of MRSA lung infection + failure to thrive alone- and that is not all she has going on by a long shot!! ...should get insurance to cover the Ambry testing I would think. She has very concerning symptoms at this point, and if it's not cf, you need to figure out what it IS so you can address it.

So other than pushing for Ambry (don't forget including deletions & duplications on that one) I would INSIST on repeating the sputum cultures frequently, if I were you. I'd also pursue seeing an allergist. Has she seen a GI in regards to the FTT? Have they done labs to investigate the possibility of celiac disease or other GI issues?

No, I don't think you are a neurotic mom. It needs to be figured out, whatever it is.

 

[hmw]

I wonder about a couple things.
How old was she when she had her sweat test?

And MRSA... that is a serious infection for an infant. Has she had repeated sputum cultures since then? History of MRSA lung infection + failure to thrive alone- and that is not all she has going on by a long shot!! ...should get insurance to cover the Ambry testing I would think. She has very concerning symptoms at this point, and if it's not cf, you need to figure out what it IS so you can address it.

So other than pushing for Ambry (don't forget including deletions & duplications on that one) I would INSIST on repeating the sputum cultures frequently, if I were you. I'd also pursue seeing an allergist. Has she seen a GI in regards to the FTT? Have they done labs to investigate the possibility of celiac disease or other GI issues?

No, I don't think you are a neurotic mom. It needs to be figured out, whatever it is.

 

[hmw]

I wonder about a couple things.
<br />How old was she when she had her sweat test?
<br />
<br />And MRSA... that is a serious infection for an infant. Has she had repeated sputum cultures since then? History of MRSA lung infection + failure to thrive alone- and that is not all she has going on by a long shot!! ...should get insurance to cover the Ambry testing I would think. She has very concerning symptoms at this point, and if it's not cf, you need to figure out what it IS so you can address it.
<br />
<br />So other than pushing for Ambry (don't forget including deletions & duplications on that one) I would INSIST on repeating the sputum cultures frequently, if I were you. I'd also pursue seeing an allergist. Has she seen a GI in regards to the FTT? Have they done labs to investigate the possibility of celiac disease or other GI issues?
<br />
<br />No, I don't think you are a neurotic mom. It needs to be figured out, whatever it is.

 

[jbrandonAW]

She was 6 months old when she had her sweat test -does that matter?

She only ever had that ONE culture and it was a throat culture done in the ER -who knows if I can even get record of it.

And she hasn't seen anyone other than the peds at the base hospital. As for FTT they just kept saying it was my breastfeeding and just kept and eye on her weight. Her last appointment the dr said that b/c her height was good (62%) that he wasn't really concerned anymore. BUT her weight is only at the 17% and that is getting a 350 ensure plus everyday and a high cal diet.

I am really going to put some pressure on the doctor tomorrow.

 

[jbrandonAW]

She was 6 months old when she had her sweat test -does that matter?

She only ever had that ONE culture and it was a throat culture done in the ER -who knows if I can even get record of it.

And she hasn't seen anyone other than the peds at the base hospital. As for FTT they just kept saying it was my breastfeeding and just kept and eye on her weight. Her last appointment the dr said that b/c her height was good (62%) that he wasn't really concerned anymore. BUT her weight is only at the 17% and that is getting a 350 ensure plus everyday and a high cal diet.

I am really going to put some pressure on the doctor tomorrow.