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Hi, just joined today and wanted to post an intro and also a request for information/input from others who have been in my shoes.
My daughter who is 8 years old has just been "diagnosed" as a failure to thrive child. That in and of itself is not a surprise to me. She was a 31 week preemie and weighed only 3pounds 7.3 ounces when born. Other than her weight though there has been no major issues due to her prematurity. Until now.
She is 3 feet 10 inches tall and weighs 34 pounds. I've known her whole life that she was underweight and that it was by quite a bit. Up till now though no one has actually labelled her FTT or seemed unduly concerned at her low weight.
We moved to this area about 1 1/2 years ago and in May of this year went for a checkup with her doctor. At this checkup he expressed his concern about her weight and referred us to Cook Childrens Pediatric Gastrology and Nutrition clinic in Fort Worth TX. Our first appointment there was in June. During the past 3 months she's had various tests run including one for cystic fibrosis, a complete metabolic workup, uring and stool samples, an endoscopy? and a ph probe. None of these tests showed anything beyond a slight case of reflux for which they prescribed prevacid.
After the first visit they sent us home with various nutritional supplements such as Boost (extra calorie), duocal, and benecal... I've added what I could when I could, have been liberal with any and all high calorie foods, and have been really pushing her to eat more when she eats. She has not gained any weight at all in all this time. The last visit to Cooks was on Wednesday, Aug 12th. The visit before that they said they'd give us/her 4 weeks to gain some weight and if not then they would be looking to place a G button. Needless to say the G button was brought up again on Wednesday.
I feel like I'm being pressured into getting the G button placed. I know she needs to gain weight but I can't help but feel like there has to be a reason why she isn't gaining and that they just haven't found it yet. I'm hoping by posting in these forums maybe someone can tell me something else they should/could check before going with the G button.
Did they check any thing endocrinology related? She is not only weighing less than an 8 year old but she is shorter as well. She may have a hormone deficiency that is easily fixable...that is what they are testing Danny for. Also, has she seen an allergist? If she has any food allergies that could effect her digestive system and keep her from absorbing many calories. I willl try to think of more over the next day or so but I hope that helps for now.
Danny's mom, they did check her thyroid, took blood samples and ran a complete work up of them, did a sweat test, an endoscopy and a ph probe. They checked her stool and said that there was "too much" sugar or fat...sorry can't remember but said it was probably from drinking juices and not absorbing the sugar from them well. I don't know if any of the test they've run qualify as endocrinologic tests or not other than checking the thyroid. They haven't done any actual allergy tests either. Would there be symptoms from an allergy besides the not being able to gain weight? If so, then it's doubtful it's allergies.
And I just noticed that when I posted originally I actually hit the wrong key when typing in her birth weight. She only weighed 2 pounds 7.3 ounces, not 3 pounds as I typed originally. I know that she needs to gain weight so I'm almost totally convinced to let them do the G button but I would like to know that there isn't a hidden reason for why she can't "pack on the pounds". I will be talking to them about that before the surgery is done. She's a very active 8 year old and has boundless energy so I think part of it may just be either due to her being so active or possibly just because our family is on the "light" side.
I'll update when i know more and thanks for the reply.
If she has too much fat in her stool that is a sign of malabsorbtion and they can check for several things based on that. They can check for pantreatic enzymes which can cause malabsorbtion due to not being able to break down certain foods/food elements. If it was sugar I am not sure what it would mean but if it were fat I would definitely make sure that everything is checked to find a cause for the malabsorbtion instead of just doing something that drastic so quickly. Are you able to talk with her old pediatrician to find out why they didn't do anything? Bring that up to her new doctor's or consider it yourself. If she is happy and healthy and doesn't show ANY other signs of illness, the lack of weight gain isn't making her organs or developement suffer, and she is doing well overall, why do something that may change her life. I am not saying to stop trying to find out what IS going on but don't let them place the G button until every other possible or probable diagnosis has been checked out. Danny has been getting tests for over a year to find out what is going on and we have eliminated most of everything but are now being sent to an endo due to delayed bone growth. See if they have ever done a hormone panel. If not have that checked. It just seems like a pretty big jump from what she has always been treated with medically. It seems like they may just be focusing on a solution instead of finding the cause...JMHO.
Welcome, I am Angie and my Abbey is my FTT she is 14mos and weighs 14lbs, they have done every test under the sun and everything has come back normal. I have chosen to stop all testing as I was tired seeing her go thorugh all that as a tiny infant.
I hope you are able to get some answers hun.