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toysinutah March 18th, 2009 09:00 AM

New here
Hi ladies,

My name is Tammy and I'm here because of my dd Hailey. She will be 5 at the beginning of Aug. She weighs 24lbs and is 37 inches tall. She's very tiny. She has congenital scoliosis, fused ribs, small heart defect, FTT, Cecostomy tube for constipation and a few others. We are mainly watching everything, thankfully!

She was 5 lbs at birth, 37 weeks. It's been a struggle to get her to gain weight. She just doesn't consume enough calories to gain and is constantly maintaining or gaining a few oz just to lose them.

She eats orally but for the most part gets her calories from pediasure and CIB. She never takes in more than 750 calories a day.

She's never been on the chart but has been following her own curve, dipping below it a few times over the years. She's been approved for GH through the endo but I don't really want to go that route and her old ped agreed. We are seeing a new ped now and the first visit the new ped was like something is going on here your child is FTT and technically malnourished... she looks very healthy, fyi, just tiny!

We have plans to see the endo, geneticist and new gi over the next 3 months. We've seen them all before but didn't really need to go back per her old ped.

Her new ped is mentioning a g-tube. To be honest I always wondered why they didn't do that years ago.

So, I guess my questions are what are the current FTT tests and how do they determine if a g-tube will actually help her. We will refuse a NG tube as she's had 10 for bowel clean outs and had a terrible time with them. She refuses to eat, drink, talk and has constant bubbles/drool coming out of her mouth. Not to mention it just hurts to see your child fight having one put in.

*tacii March 18th, 2009 03:24 PM

Re: New here
Welcome! I'm sorry to see you have to join us, but look forward to getting to know you and Hailey! I'm Tracy and my little guy Jonah, is a slow gainer. I don't have much advice about FTT testing, as our ped hasn't felt the need to do any testing yet. It does sound like a G-tube would help her though. If you're having trouble getting in more calories, I'm sure the g-tube will ensure that you're able to get in the extra calories she needs. Hopefully she'll start putting the weight on quickly after that. Anyway, I just wanted to say hi, sorry I don't have answers for you though.

roving_gypsy March 19th, 2009 06:02 AM

Re: New here
Welcome to the board, I'm also sorry i don't know the FTT testings that are done for a g-tube. We don't have one. We've done a ton of other testings but none for a gtube.
My daughter Savannah is 3 years old and is 26.7lbs. she just gained two lbs. What has worked for us is we put her on an apitite stimulant in December. We weighed her in Feb and she hadn't gained any weight but we just weighed her and she had gained the two lbs.
I hate having to turn to a medication for the weight gain, but we are taknig what we can get. Before we got on the pediasure (3 a day = 750 cals.) she was only eating about 350cals a day, so the pediasure brought us up to more cals a day but she still wasn't gaining any weight. We have no diagnosis as to why she is FTT, she just can't eat that much.
Anyways, we'd like to welcome you to the board, I know there are a few here that have done the tubes. We are just a little quite sometimes on the board.

i3ai3ydanny March 19th, 2009 05:28 PM

Re: New here
Hi!!! My DS Danny is FTT also. His problem is malabsorbtion. I think the tube is based on a combination of failed approaches to gain weight. Danny was losing constantly until two weeks ago. He was getting 1800 calories a day at this point. He started Neocate Jr. two weeks ago. Since then he has gained a pound a week. He is now getting right at 2500 calories a day. He is 20.5 months old and now weighs 23lb 4oz. The best thing that I can tell you is to look for the highest calorie anything that you can find and give it to her. BTW;Danny's nutritionist said that you don't have to mix the formula exactly how it says on the can. You would need to get a dr to figure out how many calories she needs and then give you instructions on how to mix it as it does change. That would be an option for you in the meantime. Other than that like I said...I think the placement tests for a tube are based on how much the child eats, how much the child is able to eat, and that compared to the weight he or she is losing is how the doctor would figure that out.

Danny goes to a GI tomorrow morning to start finding out why he has such severe malabsorbtion issues as he should only need 1000 calories per day to gain and needs 2500...


lovemyboysandabbey2 March 22nd, 2009 10:55 AM

Re: New here
welcome!! My Abbey is also FTT and we are currently going thorugh a bunch of testing to find out WHY she won't gain weight. She is almost 9mos and weighs 12lbs.
She had a feeding tube back in Dec and they are looking to put it back in again.

1shortmomma March 29th, 2009 05:56 AM

Re: New here
Welcome. My DD Paige is FTT she's 3 and weighs 19lbs 5oz. She is 38 inches tall. Tall and skinny. She has microcephaly - head hasn't grown since she was 4 months old. She had a rough start but has almost completely caught up developmentally thanks to physical, occuptional and speech therapy.

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