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Forum: FTT and Weight Gain Issues

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  #1  
May 14th, 2008, 11:59 AM
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New here & looking for any info or advice on FTT & low weight gain issues. I haven't had time to read through older threads yet. My son is 14 months, weight is down to 16# right now. He was 5.5# at birth. First 3 months, he ate & gained, but very fussy. Treated for reflux. Around 3 months, started slowing down on the eating, not taking bottle & not gaining enough. He is hypothryoid & takes meds for that. The refusal of bottle just got worse as he gained better motor skills. Did not take well to baby cereal & being spoon fed. We were hopeful for finger foods & while he does great with food, he does not eat enough & still doesn't drink much milk.

Spent a week in children's hospital at 6 months old. NG tube to get weight up, but no diagnosis. DRs said he is just a mystery to us. Came home with NG. We've seen peds GI, ST, and entire deveopment team at hospital where he was born. All this in addition to the entire team from hospital visit. I tried every formula. I have tried every flavor of every beverage I can find & found that nothing really clicks. If he is going to drink, then it doesn't matter what it is, he'll drink. If he doesn't want to drink, he isn't going to drink it, no matter what.

The peds GI & the developmental specialist both said they thought it was something he would outgrow. We are seeing surgeon to proceed with G-tube, but I know I still have to figure out how to get him to eat. Thank you for any advice & ideas.
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  #2  
May 14th, 2008, 12:09 PM
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Wow. Sounds like you've been through it all. I'm sorry you've had to go through all that and still have no diagnosis. I'm not even sure what to suggest. Have you tried a feeding team/feeding clinic? I'm sorry I have no other advice - it seems from your post that you've already tried all the things I usually suggest! So all I can really do is say welcome and offer up some hugs....
- Xty
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  #3  
May 14th, 2008, 01:57 PM
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*hugs* hun. I'm not sure what to suggest either. Hopefully his doctors will be able to figure something out. 16 lbs is small for his age, but it's not unheard of either. How big are you and your husband?
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  #4  
May 14th, 2008, 08:49 PM
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Quote:
Wow. Sounds like you've been through it all. I'm sorry you've had to go through all that and still have no diagnosis. I'm not even sure what to suggest. Have you tried a feeding team/feeding clinic? I'm sorry I have no other advice - it seems from your post that you've already tried all the things I usually suggest! So all I can really do is say welcome and offer up some hugs....
- Xty[/b]
Well darn, here I was hoping you could solve my problems! He has seen several ST & OT's. They have said his motor skills are fine, no problems with swallowing, aspirating. GI said .... well, if he can eat pretzels, then he's not having a problem with chewing, swallowing, etc. When we were in hospital, he drank a 5 oz. bottle in 10 minutes for the OT. Not sure I know what feeding clinic is. How do I go about finding one?

As I said, I am new. Do you think it's worth my time to go back & read old topics? Do you think I'd learn anything or get any other insight? Thank you so much.

Quote:
*hugs* hun. I'm not sure what to suggest either. Hopefully his doctors will be able to figure something out. 16 lbs is small for his age, but it's not unheard of either. How big are you and your husband?[/b]
We adopted him & his birth parents are not big. BM is short & 105#. BD, I think is average height & about 170#, so probably slim. Developmentally he is doing fine, so I just go back & forth wondering if I am making myslef crazy over this for no reason. My ped. has been concerned ever since about 3 months old. I think he will be small. But also, I think I need to admit to myself that he wouldn't even weigh what he does if not for the NG feeds.
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  #5  
May 15th, 2008, 05:27 AM
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Sounds like both parents are thin, so he'll probably be thin too. That's what I think is the cause of my DD's problems - both me and hubby are super thin.
I've never been to a feeding clinic, but I've heard about others on here going to them. They'd help with the oral aversion - you said you think he might have that. I know they work with kids and their parents on trying to get the kids to not see eating as a control issue/power struggle but instead as something enjoyable and safe. Ask you ped about one - or if he/she doesn't know - ask your ped GI doc.
- Xty
PS - I definitely think it can't hurt to go back and read old posts - you never know when there might be a small nugget of info that could help - and if nothing else it will make you feel less 'alone' when you see how the rest of us are struggling with some of the same things you've been struggling with....
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  #6  
May 15th, 2008, 07:13 AM
frgsonmysox's Avatar Platinum Supermommy
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If his birth parents are small then he may be right on target for HIM. Our daughter was told recently that she is on the wrong growth charts. My husband is 150 lbs and 5'3, I'm 117 lbs and 5'4. Neither of us are average size and they told us that the growth charts are based on moms who are 5'5 and dads who are 5'10 at least. So maybe ask the ped if they have a special growth chart for babies who have bio parents that are on the small size.
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  #7  
May 21st, 2008, 09:29 AM
fiefer87's Avatar Mega Super Mommy
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It definately sounds like your dd needs a feeding disorders clinic. They deal with all of the pediatric feeding disorders, and how to get the child eating appropriately.

In regards to the feeding clinics, my dd is scheduled to go for intensive day treatment for a feeding disorder this july. We are ging to the one at the Hershey Medical Center in PA, its a 6 hour drive for us and we will be there for at least 4 weeks as there are no good reputable ones near us. We started as out patient, made 3 separate trips and came home with feeding programs, when we reached a plateau, we called back, made another appt, then went in. For most insurance (my insurance is covering her intensive day treatment) the child has to fail out patient before they will cover any sort of intensive day treatment or inpatient treatment. The clinic we go to has over a 90% success rate for the kids they see in their intensive program. Also, do a lot of research online. I had talked to my dd's ped, endo, OT's PT's, and what not, and they didn't really know. So I did a lot of googling, called the various programs, and spoke to the directors before deciding anything. I used the key words pediatric feeding disorder clinic or just pediatric feeding clinic. HTH and if you have any questions please feel free to pm me.
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