A quick update ...

[meaniejean]

I just wanted to let you all know that I hadn't forgotten about updating - just don't have a lot to add yet.

So, my 4.5 mos DS is still constipated, still vomiting and still not gaining. He was 14 lbs. 12 oz. yesterday at his appointment (down from 15.5 lbs. in mid Feb.) He has gone from 95th% in Jan to 25% in March. The ped says he isn't worried yet, but we are getting pretty concerned.

The docs seem to think that the constipation is causing him to vomit and thus not gain weight - although he had a huge poop the other day after a number of interventions so he is obviously getting some food down. We have switched from lactulose to miralax because the lactulose did not work at all. They think that if we keep things moving for him that he will start doing better.

His sweat test was negative (13 & 17? - both from the left arm because right wouldn't produce enough sweat), but at this point I am thinking of asking for the genetic testing. I also read somewhere that prolonged vomiting can cause a false negative on the sweat test - anyone know anything about that?

Keeping all of you in my thoughts and sending well wishes,
Sandra

 

[meaniejean]

I just wanted to let you all know that I hadn't forgotten about updating - just don't have a lot to add yet.

So, my 4.5 mos DS is still constipated, still vomiting and still not gaining. He was 14 lbs. 12 oz. yesterday at his appointment (down from 15.5 lbs. in mid Feb.) He has gone from 95th% in Jan to 25% in March. The ped says he isn't worried yet, but we are getting pretty concerned.

The docs seem to think that the constipation is causing him to vomit and thus not gain weight - although he had a huge poop the other day after a number of interventions so he is obviously getting some food down. We have switched from lactulose to miralax because the lactulose did not work at all. They think that if we keep things moving for him that he will start doing better.

His sweat test was negative (13 & 17? - both from the left arm because right wouldn't produce enough sweat), but at this point I am thinking of asking for the genetic testing. I also read somewhere that prolonged vomiting can cause a false negative on the sweat test - anyone know anything about that?

Keeping all of you in my thoughts and sending well wishes,
Sandra

 

[meaniejean]

I just wanted to let you all know that I hadn't forgotten about updating - just don't have a lot to add yet.

So, my 4.5 mos DS is still constipated, still vomiting and still not gaining. He was 14 lbs. 12 oz. yesterday at his appointment (down from 15.5 lbs. in mid Feb.) He has gone from 95th% in Jan to 25% in March. The ped says he isn't worried yet, but we are getting pretty concerned.

The docs seem to think that the constipation is causing him to vomit and thus not gain weight - although he had a huge poop the other day after a number of interventions so he is obviously getting some food down. We have switched from lactulose to miralax because the lactulose did not work at all. They think that if we keep things moving for him that he will start doing better.

His sweat test was negative (13 & 17? - both from the left arm because right wouldn't produce enough sweat), but at this point I am thinking of asking for the genetic testing. I also read somewhere that prolonged vomiting can cause a false negative on the sweat test - anyone know anything about that?

Keeping all of you in my thoughts and sending well wishes,
Sandra

 

[meaniejean]

I just wanted to let you all know that I hadn't forgotten about updating - just don't have a lot to add yet.

So, my 4.5 mos DS is still constipated, still vomiting and still not gaining. He was 14 lbs. 12 oz. yesterday at his appointment (down from 15.5 lbs. in mid Feb.) He has gone from 95th% in Jan to 25% in March. The ped says he isn't worried yet, but we are getting pretty concerned.

The docs seem to think that the constipation is causing him to vomit and thus not gain weight - although he had a huge poop the other day after a number of interventions so he is obviously getting some food down. We have switched from lactulose to miralax because the lactulose did not work at all. They think that if we keep things moving for him that he will start doing better.

His sweat test was negative (13 & 17? - both from the left arm because right wouldn't produce enough sweat), but at this point I am thinking of asking for the genetic testing. I also read somewhere that prolonged vomiting can cause a false negative on the sweat test - anyone know anything about that?

Keeping all of you in my thoughts and sending well wishes,
Sandra

 

[meaniejean]

I just wanted to let you all know that I hadn't forgotten about updating - just don't have a lot to add yet.
<br />
<br />So, my 4.5 mos DS is still constipated, still vomiting and still not gaining. He was 14 lbs. 12 oz. yesterday at his appointment (down from 15.5 lbs. in mid Feb.) He has gone from 95th% in Jan to 25% in March. The ped says he isn't worried yet, but we are getting pretty concerned.
<br />
<br />The docs seem to think that the constipation is causing him to vomit and thus not gain weight - although he had a huge poop the other day after a number of interventions so he is obviously getting some food down. We have switched from lactulose to miralax because the lactulose did not work at all. They think that if we keep things moving for him that he will start doing better.
<br />
<br />His sweat test was negative (13 & 17? - both from the left arm because right wouldn't produce enough sweat), but at this point I am thinking of asking for the genetic testing. I also read somewhere that prolonged vomiting can cause a false negative on the sweat test - anyone know anything about that?
<br />
<br />Keeping all of you in my thoughts and sending well wishes,
<br />Sandra

 

[JORDYSMOM]

Sandra, I'm so sorry you are going through this. I really do think you should push for the full panel genetic test. I know those numbers are low, but I also know there are members here with numbers that low or lower who have found two CF mutations with the DNA test.

I can't understand why your ped isn't worried about a child who falls from the 95th to the 25th percentile in just two months. I don't know any facts about prolonged vomiting causing false negatives on sweat tests, but I do know that around here, we see a lot of false negatives.

I sincerely hope you can find the answers you need to help your baby and soon.

Stacey

 

[JORDYSMOM]

Sandra, I'm so sorry you are going through this. I really do think you should push for the full panel genetic test. I know those numbers are low, but I also know there are members here with numbers that low or lower who have found two CF mutations with the DNA test.

I can't understand why your ped isn't worried about a child who falls from the 95th to the 25th percentile in just two months. I don't know any facts about prolonged vomiting causing false negatives on sweat tests, but I do know that around here, we see a lot of false negatives.

I sincerely hope you can find the answers you need to help your baby and soon.

Stacey

 

[JORDYSMOM]

Sandra, I'm so sorry you are going through this. I really do think you should push for the full panel genetic test. I know those numbers are low, but I also know there are members here with numbers that low or lower who have found two CF mutations with the DNA test.

I can't understand why your ped isn't worried about a child who falls from the 95th to the 25th percentile in just two months. I don't know any facts about prolonged vomiting causing false negatives on sweat tests, but I do know that around here, we see a lot of false negatives.

I sincerely hope you can find the answers you need to help your baby and soon.

Stacey

 

[JORDYSMOM]

Sandra, I'm so sorry you are going through this. I really do think you should push for the full panel genetic test. I know those numbers are low, but I also know there are members here with numbers that low or lower who have found two CF mutations with the DNA test.

I can't understand why your ped isn't worried about a child who falls from the 95th to the 25th percentile in just two months. I don't know any facts about prolonged vomiting causing false negatives on sweat tests, but I do know that around here, we see a lot of false negatives.

I sincerely hope you can find the answers you need to help your baby and soon.

Stacey

 

[JORDYSMOM]

Sandra, I'm so sorry you are going through this. I really do think you should push for the full panel genetic test. I know those numbers are low, but I also know there are members here with numbers that low or lower who have found two CF mutations with the DNA test.
<br />
<br />I can't understand why your ped isn't worried about a child who falls from the 95th to the 25th percentile in just two months. I don't know any facts about prolonged vomiting causing false negatives on sweat tests, but I do know that around here, we see a lot of false negatives.
<br />
<br />I sincerely hope you can find the answers you need to help your baby and soon.
<br />
<br />Stacey

 

[ktsmom]

Ditto on the lack of concern from your ped - I totally don't understand it. I really hope that you can get some answers, yet I don't know what to tell you to do that you already haven't tried. Thanks for the update and keep advocating for your son. <img src="i/expressions/heart.gif" border="0">

 

[ktsmom]

Ditto on the lack of concern from your ped - I totally don't understand it. I really hope that you can get some answers, yet I don't know what to tell you to do that you already haven't tried. Thanks for the update and keep advocating for your son. <img src="i/expressions/heart.gif" border="0">

 

[ktsmom]

Ditto on the lack of concern from your ped - I totally don't understand it. I really hope that you can get some answers, yet I don't know what to tell you to do that you already haven't tried. Thanks for the update and keep advocating for your son. <img src="i/expressions/heart.gif" border="0">

 

[ktsmom]

Ditto on the lack of concern from your ped - I totally don't understand it. I really hope that you can get some answers, yet I don't know what to tell you to do that you already haven't tried. Thanks for the update and keep advocating for your son. <img src="i/expressions/heart.gif" border="0">

 

[ktsmom]

Ditto on the lack of concern from your ped - I totally don't understand it. I really hope that you can get some answers, yet I don't know what to tell you to do that you already haven't tried. Thanks for the update and keep advocating for your son. <img src="i/expressions/heart.gif" border="0">

 

[Alyssa]

Ditto again.... <i>I would be very concerned about a doctor who isn't concerned</i>... that is a big drop in a short amount of time.... this is a little body and things happen quickly. There isn't always a lot of room for error -- you aren't playing with someone who has a lot of extra weight to loose.

<b>CF or not it sounds to me like this child's health is very much in jeopardy</b>.... if it were me, I'd be looking for another doctor and someone to run a genetic test.

Best wishes... please keep us informed.

 

[Alyssa]

Ditto again.... <i>I would be very concerned about a doctor who isn't concerned</i>... that is a big drop in a short amount of time.... this is a little body and things happen quickly. There isn't always a lot of room for error -- you aren't playing with someone who has a lot of extra weight to loose.

<b>CF or not it sounds to me like this child's health is very much in jeopardy</b>.... if it were me, I'd be looking for another doctor and someone to run a genetic test.

Best wishes... please keep us informed.

 

[Alyssa]

Ditto again.... <i>I would be very concerned about a doctor who isn't concerned</i>... that is a big drop in a short amount of time.... this is a little body and things happen quickly. There isn't always a lot of room for error -- you aren't playing with someone who has a lot of extra weight to loose.

<b>CF or not it sounds to me like this child's health is very much in jeopardy</b>.... if it were me, I'd be looking for another doctor and someone to run a genetic test.

Best wishes... please keep us informed.

 

[Alyssa]

Ditto again.... <i>I would be very concerned about a doctor who isn't concerned</i>... that is a big drop in a short amount of time.... this is a little body and things happen quickly. There isn't always a lot of room for error -- you aren't playing with someone who has a lot of extra weight to loose.

<b>CF or not it sounds to me like this child's health is very much in jeopardy</b>.... if it were me, I'd be looking for another doctor and someone to run a genetic test.

Best wishes... please keep us informed.

 

[Alyssa]

Ditto again.... <i>I would be very concerned about a doctor who isn't concerned</i>... that is a big drop in a short amount of time.... this is a little body and things happen quickly. There isn't always a lot of room for error -- you aren't playing with someone who has a lot of extra weight to loose.
<br />
<br /><b>CF or not it sounds to me like this child's health is very much in jeopardy</b>.... if it were me, I'd be looking for another doctor and someone to run a genetic test.
<br />
<br />Best wishes... please keep us informed.