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  #1  
April 1st, 2008, 01:09 PM
anabella's Avatar Regular
Join Date: Jun 2006
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Hi everyone,

I think I have posted here once before but I don't remember. I will just give you all a summary of what is going on.

My son is 14 months old and 14 pounds 14 ounces. He has never enjoyed solid foods. He has oral motor delays and spits textured food out and won't take anything warm. He refuses to eat more that 3 to 4 oz of anything at a time if it is soft and less than five bites of anything picked up. I breastfed him up until the begining of March when we were admitted to the hospital for flu and weight loss. He got all the way down to 14 pounds. They made me wean him because I could not pump and they wanted to count every last calorie he was taking. The problem with that is he will not take a cup or bottle so we have to syringe feed him his fluids. He won't take more than 2 oz of fluid at a time either. He is on pediasure now. They sent us home from the hospital with intructions to feed him 1350 calories /day. OMG!! We have to force feed him every two hours. He did gain several ounces from the IV fluid and the extra forced calories and they said all was looking up but now he is losing weight again. Nothing has changed, he is still taking in all of his calories and keeping them down?? I just don't know what to do yet. He has had every test known to man. The only thing we have found in the last year is that he has tachycardia .

Tell me how you all have fed your little ones??? Have you had to force feed?? If not how did you do it? I need help. How can a child take in double the calories they need and still lose weight?

Here is what we have done:

Blood tests for: Thyroid, Blood sugar, liver , Kidneys and all the other "normal" stuff you get in a panel. ALL NORMAL

Ultrasound on his heart. NORMAL

Urine analysis. NORMAL

What else can we do? Anything?

People keep telling me that he will just magically eat one day if I keep offering him food and drinks. As if I am not!! Ug I hate that. If I hear one more "well" meaning person tell me I should just feed him mashed potatoes and gravy and ice cream I will go insane. AND it's not even his willingness to eat that is the problem, sure not helping the situation BUt I do get all his calories in him EVERY day with out fail no matter what and he is STILL losing!!!

Ok I will stop now as I could go on and on and on and somehow I think you all understand that.

Please if you have any advice or even just a ear.

Thank you.
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  #2  
April 1st, 2008, 01:39 PM
Xty's Avatar
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First of all - HUGS! Sounds like you really need some.
Have you been to a pediatric gastroenterologist (GI doc) yet? They are the experts in failure to thrive (FTT). Have you seen a speach pathologist/feeding team? Sounds like you need one. Have you had swallow studies done? I'm assuming you've already done all that since you say you've had all the tests, but just want to make sure first as those, in my opinion, are the first places to start.
I wish I could tell you the magic answer on how to get him to eat, but I don't have it. Sounds like you totally need the feeding team though. I've never had to use that for my kids, but I know others on here do and from what you are describing it sounds like the thing they help with.
I totally understand your frustration with the things people say. My MIL was here this weekend and she once again said "well, kids won't starve themselves - she's probably just not hungry right now." No matter how many times I tell her that some kids DO, she just doesn't get it. So I swallow my anger and just don't even comment anymore when she says that. But I hear ya.
Anyway, I just wanted to let you know I care.
- Xty
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  #3  
April 1st, 2008, 01:46 PM
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*hugs* hun. I agree, he needs to be seen by a feeding clinic. I disagree with the doctors who forced you to wean though, that breaks my heart. At the very least you had breastmilk to fall back on. My daughter was the same size as your son, she wasn't losing weight at the time but she wasn't gaining it either. It was until the past 2 months or so that she began eating. It was like a light switch flipped. It's tough and I wish I had more advice to help you. Thats the terrible thing about FTT/Weight gain issues, is every child is different.
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  #4  
April 1st, 2008, 05:28 PM
anabella's Avatar Regular
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Posts: 87
Thank you for the replies!

We are actually working with a feeding team but they told us they will have a hard time helping him if he is unwilling to eat. They are coming again tomorrow with a few other therapists. I don't know alot about this process so I don't really know what to expect.

As far as the tests go we have had a Barium swallow done, is that the same test you were talking about? The test results were labeled as inconclusive because they couldn't get him to swallow the barium. I have also never heard of a pediatric GI doctor. I will ask about this at my next weight check. Do you have to have an organic reason for FTT inorder to go to this type of doctor? So far we can not find a "reason" for this and that makes me feel like a terrible parent when I know I am not one.

Thanks again for your responses and well wishes.
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  #6  
April 1st, 2008, 06:29 PM
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Definitely continue to be his advocate. To me it sounds like all the force feeding is becoming a deterrent to him wanting to eat. He may be associating eating with negative feelings now, you know? And thats odd that the test was ruled inconclusive... my daughter had the Barium test done and she wouldn't drink the bottle, or take it by syringe, so they did a tube down her nose. Quick and easy, not necessarily fun....
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  #7  
April 1st, 2008, 06:54 PM
Caeden&#39;sMama's Avatar Mega Super Mommy
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I agree with the others... If you're not satisfied with the doctors, keep pushing until you are. What are you supposed to do, just write off your child? I think not...

Hope you can find some answers... Hang in there!
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  #8  
April 1st, 2008, 11:15 PM
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Quote:
If I hear one more "well" meaning person tell me I should just feed him mashed potatoes and gravy and ice cream I will go insane.[/b]
I hear you there
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  #9  
April 2nd, 2008, 05:56 AM
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The feeding team said they might not be able to help you if he's unwilling to eat? Uh, hello, isn't this exactly what they are trained to do?!?! Oh my! I wouldn't be too pleased with that answer. Keep pushing them to help you, like you are doing.
Yes, definitely ask about seeing a pediatric GI doc. It's my understanding that they are the FTT expert docs. I didn't know that when we first were sent to one (we went for my DD's reflux) but the more I read about them the more I came to understand we were seeing him for the FTT too and the articles I saw on the web about his practice talked about FTT. We also saw some FTT patients in his waiting room.
I agree with frgsonmysox that it sounds like the force feeding could be making him more and more resistant to eating. We forced bottles on my DD a lot to the point that she didn't want them anymore. She'd get very very angry when we tried to offer one. Luckily that was around when we were starting solids so we decided we could try backing off on the forcing of bottles and tried to offer more solids. But we were careful this time and didn't force it. But it's so dang hard not to when you are so worried about their weight! So it's been a few months of not forcing bottles now and she's finally taking them so much better. Which is good as now she's decided she doesn't like the baby food and only wants table food, yet doesn't have the technique down well enough yet to really get much calories from it! Ah, Ms Independant. But anyway, forcing feeds can, in my own experience, cause the child to resist eating. But this is something the feeding team should be able to help with. I've read up on feeding teams and know they can help kids that have food aversions - which is what it sounds like you might be dealing with. They first get the kid to accept having anything put to their mouth - a spoon, a toy, food, etc. Work with him to get him to see food is not scarey, but fun, etc. So keep pushing your feeding team to help you.
Anyway, I hope you come back and talk more with us too. I've found being on here very helpful.
- Xty
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  #10  
April 2nd, 2008, 08:19 AM
frgsonmysox's Avatar Platinum Supermommy
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Quote:
Quote:
If I hear one more "well" meaning person tell me I should just feed him mashed potatoes and gravy and ice cream I will go insane.[/b]
I hear you there
[/b]

Ugh! I know! If I hear, "just put butter on everything" one more time I may scream.
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  #11  
April 2nd, 2008, 01:44 PM
1shortmomma's Avatar Platinum Supermommy
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Quote:
People keep telling me that he will just magically eat one day if I keep offering him food and drinks. As if I am not!! Ug I hate that. If I hear one more "well" meaning person tell me I should just feed him mashed potatoes and gravy and ice cream I will go insane. AND it's not even his willingness to eat that is the problem, sure not helping the situation BUt I do get all his calories in him EVERY day with out fail no matter what and he is STILL losing!!![/b]
I hear you on the bolded! People keep telling me to give Paige cheeseburgers and ice cream.
As far as getting the calories in and he is still losing...we are in the same boat there. Paige is not unwilling to eat. She is a pig...she eats more than I do most of the time. I really don't know where the calories are going because they are getting in there.

Sorry that the feeding team wasn't much help. That is strange that they told you they can't help if he is unwilling to eat. They told us that well if she is getting all those calories and eating that much than she should be gaining. Should be and doing are 2 different things.
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  #12  
April 2nd, 2008, 02:54 PM
anabella's Avatar Regular
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ok I am somewhat more optimistic today! Thanks for all the continous input, I sure could use it.

We had another panel of people evaluate him today. It was 4 different specialists. They were awesome with him and they even came to our house. That was a plus!

Ok so on their scale he has gained 3 oz!!! I won't get too excited yet cus well we all know scales vary widely. They did shed some light on why he may be stalling and losing weight though. It takes him upwards of 1 hour to eat 200 calorie portions and they said he is burning it all before he is done. I had never thought of that. They also agreed with you all that the force feeding is a bad idea but they can not change doctors orders so they are going to talk to him for me and see what else we can do. They also suggested I let him graze which is also against what the doc said.

I feel so much better today, like I am doing something. I will be looking into the GI doc on Friday at our official weigh in and ask why they didn't do the tube down the nose. Thank you for describing your story to me it will help me get help for my baby.

I hate that you all are in this situation as well but sure am glad someone pointed me in your direction.
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  #13  
April 3rd, 2008, 05:26 AM
Xty's Avatar
Xty Xty is offline
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I'm glad you are feeling better and that we've helped you! I know this board helped me a lot too. It just really helps to know there are others out there suffering the same way you are and that will understand.
Good luck with getting the doc to change the orders on the forced feedings and getting a GI doc involved. I think both would help so much. Keep in mind that if you DO decide to back off on the forced feedings he'll probably lose weight for awhile as it will take time for him to learn to eat on his own. You'll have to brace yourself for that - it's so hard. But you can come here and get some support from us if you need it.
- Xty
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