"Failure to thrive"

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

UCreallySUCKS
Regular Member


Date Joined May 2006
Total Posts : 260
   Posted 9/22/2006 4:25 PM (GMT -7)   
I was browsing through some recent posts on here and I was surprised to find some people were older children, teenagers and even senior citizens before being diagnosed with cf. 
 
My daughter Rachael was recommended for a cf sweat test due to "failure to thrive" 
 
 She was born at a healthy weight, 8lbs and 5 oz and stayed around 50th percentile until one year old at which point she pretty much stalled out and fell off the charts.  She's about to turn 3 now and her weight is 10%ile at 25 pounds and her height is like negative 15%ile at 36 inches tall.   Anyway I told the doctor then that the test would not be necessary because in my pregnancy I was tested for carrying the gene for cf and the test was negative, but then her ped. said those tests in pregnancy only check for the most common mutations and not less commmon ones. 
Eventually though a higher doctor than her ped (her ped was a resident)  said that the test wouldn't really be necessary since I was negative on my carrier test. 
 
I guess it's just one of those things you always wonder.  At the time I passed it off because I really thought I would definitely *know* if she had it because I have a friend with cf and she is very very ill, she's on antibiotics like 75% of the time and has to do breathing treatments every day and has oxygen tubes in her 100% of the time especially at night its high oxygen content and is not allowed to be around people most of the time...but I found on here people a lot more healthy than her with the same illness so I guess it makes me wonder? 
 
Is failure to thrive in and of itself a symptom of cf?  Are there others I could look for?  I doubt the dr would give another order for the sweat test now just because I got worried.  thanks for all your replies
Diagnosed May 2006 w/severe UC
10 mg prednisone, tapering
2 400mg Asacol 3X day
1 multivitamin/day
1 Benadryl before bed
In remission since July 2006


momof3boys1girl
Regular Member


Date Joined Apr 2006
Total Posts : 25
   Posted 9/23/2006 8:59 AM (GMT -7)   
Hi! If I were in your shoes I would probably have your daughter tested just to be on the safe side. Failure to thrive is a symptom of cf although it could be symptoms of various other things as well. Some children are diagnosed with cf due to just being  diagnosed as failure to thrive. I have heard of several cases of the mom testing negative with the prenatal screening....(they do only check for the most common mutations)....only to find out later that the child does indeed have cf with much less common mutations. Check your childs poop and see if it looks oily or if it floats. Also does she have stomach aches or is she gassy? Of course wheezing and coughing are also symptoms of cf. Also it is possible to have only digestive problems with cf especially if you are dealing with rare mutations. Everyone with cf is different though so it is really hard to say....I would just have her tested for your peace of mind.

imondeck
Regular Member


Date Joined Apr 2006
Total Posts : 105
   Posted 9/25/2006 6:53 AM (GMT -7)   

I would demand that the sweat test be performed (at an accredited place), you are the parent and concerned about your child, you are your child's advocate.

My son was being tested years ago for failure to thrive, they tested for several things but not for CF.  Years later he still was not gaining and I began to notice the salt crystals in his eyebrows and sideburns, I demanded that he be tested for CF,  he had the sweat test and tested positive twice.  His mutations have not been found as of yet (with genzyme and the full panel from Ambry being done).  Our pulmo is not concerned with the gene testing right now.  He did have his tonsils/adnoids out in early January and it made such a difference in his breathing and sore throats (he failed a sleep study and had obstructive and central apnea).  He goes to his doctor every 3 months and has been doing very well, just need to get the weight on!

 

Good luck!


Sandra
 
Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind. ~Dr. Seuss


UCreallySUCKS
Regular Member


Date Joined May 2006
Total Posts : 260
   Posted 9/27/2006 9:13 PM (GMT -7)   
Thanks for your advice, Rachael's 3 year appointment is very soon, I am going to ask the doctor about it. I'm not very good at demanding things, one of my biggest problems..
Diagnosed May 2006 w/severe UC
10 mg prednisone, tapering
2 400mg Asacol 3X day
1 multivitamin/day
1 Benadryl before bed
In remission since July 2006


momof3boys1girl
Regular Member


Date Joined Apr 2006
Total Posts : 25
   Posted 9/28/2006 1:53 PM (GMT -7)   
I dont mean to sound ignorant but what is UC?

UCreallySUCKS
Regular Member


Date Joined May 2006
Total Posts : 260
   Posted 9/28/2006 6:33 PM (GMT -7)   

UC is Ulcerative Colitis, which I have.  I usually post on that topic, by my wife posted on this CF board instead, under my name. More can be found out about UC under that board.

---Nathan

 


Diagnosed May 2006 w/severe UC
10 mg prednisone, tapering
2 400mg Asacol 3X day
1 multivitamin/day
1 Benadryl before bed
In remission since July 2006


caretaker
New Member


Date Joined Apr 2007
Total Posts : 9
   Posted 8/22/2007 1:06 PM (GMT -7)   
yeah   :-) Well there is away to get her to gain  but you will have to have her to a GI doc there is a thing called a G Tube that they put in her tummy. My daughter had to have one because I could not get her to eat either. When they get older then I used present or candy to get her to eat, But when They are so young you cant not reason with them they cant understand that it is a matter of life and death. All they know is you are at your wits end and upset. I tried not to put a G Tube in my baby too but she was 1 years old and was 13 lbs the size of 4 month old baby. The good news is that she will not remeber this time and if you get one now it will be like she has it all of her life. At first it is hard to deal with but when you see your baby gaining and not getting sick it is all the it is worth it. Some people will say dont do it and some people willl say they would never but It can save her life. Hope thie helps you . God Bless you Mrs. Hunter
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, December 06, 2016 11:06 AM (GMT -7)
There are a total of 2,733,559 posts in 301,134 threads.
View Active Threads


Who's Online
This forum has 151272 registered members. Please welcome our newest member, Toto'surprise.
326 Guest(s), 12 Registered Member(s) are currently online.  Details
BensonHill, Bololidat, tickbite666, Serenity Now, mpost, jabele, WORLD HEALING, Bobby Mac, Namie, peanut307, Traveler, iamamess


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer