need info on cf i have 3 mo. old infant

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mackie
New Member


Date Joined Sep 2005
Total Posts : 3
   Posted 9/11/2005 9:07 AM (GMT -7)   
  Hi,
   I have a 3 month old baby with what they think is cf. He now is 8 pounds. And had hole in the heart repaired. but I cant get him to eat good. Any help for this PLEASE. He has trouble with his bouls. And has failure to thrive. He is my youngest foster child and I so much want to help him. This is tearing my heart out not knowing what to do for him. Please help me help him.
 
                       Thank you
                         Mackie
 

Teri16
Veteran Member


Date Joined Dec 2003
Total Posts : 5230
   Posted 9/11/2005 7:10 PM (GMT -7)   
Hi Mackie and Welcome to HealingWell! tongue
 
The baby's plight and yours just touched my heart.  I would think that since the baby's heart has been surgically fixed, that this probably is not the problem.  Please ask his Dr. re this.
 
However, not knowing what the little one's background is could play a part in all of this.  Being a Foster Parent, you should be aware of the baby's past history? 
 
The Failure To Thrive (FTT), can be brought on by so many things, including his possible CF diagnosis.
Here is a link to a site that should help to explain more.
 
My thoughts and best wishes to you and your little one.
 
Hugs, Teri :)
 
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
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Teri16
Veteran Member


Date Joined Dec 2003
Total Posts : 5230
   Posted 9/11/2005 7:43 PM (GMT -7)   

Mackie, here's another site... tongue http://www.keepkidshealthy.com/welcome/conditions/failure_to_thrive.html
It
does state as you read further down the page that babies with CF do have foul smelling & oily bowel movements.  It also gives you some ideas.  However, make sure you work closely with the Pediatrician!

 
Big Hugs, Teri :)
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
Please allow HealingWell to continue helping others by donating:


Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 9/12/2005 8:59 AM (GMT -7)   
Hi Mackie,
 
Sorry about your baby having some heart issues and too possible CF.  I have twins with CF.  First of all, if there is a belly distention that is not making your baby "want to eat" (from feeling full all the time), and there is significant bowel problems, then you can try a glycerin suppository to help with gas build up and possibly stool back up.  If your baby does have CF, once started on digestive enzymes, this will clear up some issues for you.  It's truely medical miracle medicine. 
 
Does your baby have orange or frothy yellow stools?  This will be a indication of digestive problems that occur in CF individuals.
 
I tend to not say too much due to different individuals having different genotype's and can have mild to severe symptoms.  My twins have the most comon genotype which cause a middle of the road type of symptoms.  A diagnosis must be made first in your case, and the sooner the better to know.  Ask doctor to recomment a CF care center for the test for best results.  It's only a little over 100 dollars and is covered by insurance. 
 
Hope this helps and let me know if you have any other questions. 

mackie
New Member


Date Joined Sep 2005
Total Posts : 3
   Posted 9/15/2005 2:04 PM (GMT -7)   
 
  Twinstride,
     Thank you for some of your info. and I have found A gas mad for him that is all natural. Its called Gripe water. It has done wonders. He took 5 ounces yesterday for the frist time and i cried. sounds dum but something I have been waiting for for a long time. I am goin to ask his doctor to test him again. I need to know now what the out come will be.
 
                        Thank you again
                 And God bless you and your family
                           Mackie

mackie
New Member


Date Joined Sep 2005
Total Posts : 3
   Posted 9/19/2005 5:26 PM (GMT -7)   
nono  Hi everyone,
        I talked with the babys doc. today and he is going to do a sweat test this wed. I called him because the baby has only taken 9 and a half ozs of milk today. And not much more then that for the last 3 days I cant get him to eat. I tried a I dropper and all. Does anyone out there have any info on this? He was 8 pounds 4 ozs last monday today he was 8 pounds 2 ozs. So he is not gaining. And the doc said he is not to worried about that or the fact he is only taking a little at a time. But I am worried sick over this. I just dont know what to do. His nerse that comes 2 times a week said something is wrong but what? We got to find out soon. so she is upset with the doc too. If anyone out there has an idea how to get him to eat I AM LISTENING.
 
 
                       Hugs to all
                        Mackie
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