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To G tube or not to G tube! nikki0708 3 kids; Orting, Washington 176 posts
20th Sep '12

Well to start this off my almost 3 year old son Ryder has been failure to thrive since birth, actually since I was 22 weeks pregnant he started measuring small they changed my due date so many times to try and match his size he was born 10 days late and only 6 lbs, I breastfeed for first 6 weeks till we went to dr and he hadn't gained weight they said it was acid reflux and put him on prevaid and AR with lipil from enfamil and on his 4 month apt he only weighed 9 lbs, so we started putting rice cereal in his bottles to give him more calories and thicken it up so he could keep it down. (per drs orders) we movedaround his 1st birthday and he weighed 13 lbs 4oz and was 26 inches so we got a new dr and she kept telling me to feed him cheeseburgers and fries(yea I know right?) finally found him a new doctor around 18 months who instantly referred us to a GI doctor, by the time we seen him he was 2 and weighed 17 lbs 3 oz and was 29 inches and his whole time every meal was a fight to get him to take even 3-4 bites and drink a cup of milk (even at 1 he only drank 5 ozs) it got to the point where I'd let him eat whatever he wanted to just eat! His GI dr started him on pediasure 3-4 times a day which he drank for Awhile and he even hit 19 lbs on it and grew 2 inches! Then he stopped wanting to drink it just like his food it became a fight, so dr ordered upper and lower Barrium X-rays! Blood work when all that came back normal we kept on a strict every 2-3 hours offer a snack or meal. Well he rarely ate that, so at 2 1/2 he finally hit 20 lbs and 32 inches! I was so happy he hit 20 lbs! Every where else he excells and is so smart! So we started pediasure 1.5 because of his refusal to eat! Also they brought up feeding tube I then began trying to cram food in his mouth which we all know 2 year olds are very stubborn! Well then earlier this week we went to dr again and he'll be 3 next month and he actually lost 6 oz and hasnt grown any taller, so they are sending us to a g tube class and to talk to surgeon my concerns r for his pain and how difficult this will he for him to adjust to at 3 years old! Also what if this doesn't work! Idk I guess I'm just nervous and wanting to hear other people opinions. (he's also had a colonscopy and endoscopy) all tests have came back normal even seen a endroconglist and their test were normal!

Buzz and Almond Joys momm 2 kids; Albuquerque, New Mexico 12593 posts
20th Sep '12

We were in a similar situation and chose no g tube. We tried a calorie additive instead. It worked for a bit, but the biggest help was getting his tonsils removed. He went from 30lbs to 37 lbs in a year- which as you know is a lot ( this was last year at 3/4 yrs old)

2happy 50 kids; North Carolina 14739 posts
20th Sep '12

I hope you don't mind I have no advice. But I wanted to tell you my heart broke reading this and I hope you get some answers and he continues to grow and flourish. I have a 2.5 year old and I can't imagine going threw all that you have. Good luck and prayers your way.

the BEAST Wisconsin 15638 posts
20th Sep '12

Definitely sounds like a feeding tube of some sort would be in his best interest.



I've been following this momma's blog for almost 2 years now. Her youngest (of 14!) just had a PEG placed and has been tube feeding since March I think



http://bakersdozenandapolloxiv.com/



EDIT: he had a PEG and just got a mic-key

user banned 3 kids; Washington 15083 posts
20th Sep '12

With my son, no g-tube. But we do pediasure. He refuses pediasure 1.5. And duocal recently added to his pediasure. I've also starting adding older toddler formula to whole milk mixed with half and half.
All my sons tests come back normal also. Has your son been tested for fructose intolerance or overgrowth of bacteria? It's so frustrating!
Also, has he been in feeding therapy?

nikki0708 3 kids; Orting, Washington 176 posts
20th Sep '12

I guess they did a bioposy and allergy tests and everything was normal except his lactose levels were really low so we cut out all dairy (hadn't been easy) but our main problem is right now he just isn't eating or drinking ANYTHING anymore I mean if I force him I can get him to drink 2 pediadsures and eat 1 meal but that's enough calories. I'm adding 1 TAblespoon heavy whipping cream to his pediasure yo add 100 calories to his drink but at most he's only eating 600 calories a day. I feel like a serious failure as a mom he wears 12-18 months at 3 and his 7 month old brother is 17 lbs and wears 9-12 I mean I just dont get it

nikki0708 3 kids; Orting, Washington 176 posts
20th Sep '12

<blockquote><b>Quoting 2happy:</b>" I hope you don't mind I have no advice. But I wanted to tell you my heart broke reading this and I hope ... [snip!] ... to grow and flourish. I have a 2.5 year old and I can't imagine going threw all that you have. Good luck and prayers your way."</blockquote>




Thank you I think it's harder on him since he knows he's a big boy but he's the size of a 10 month old so he can't keep up with the bigger kids and he actually gets depressed about it a lot and will just shut down and not play anymore it breaks my heart

nikki0708 3 kids; Orting, Washington 176 posts
20th Sep '12

<blockquote><b>Quoting boobook:</b>" With my son, no g-tube. But we do pediasure. He refuses pediasure 1.5. And duocal recently added to his ... [snip!] ... son been tested for fructose intolerance or overgrowth of bacteria? It's so frustrating! Also, has he been in feeding therapy?"</blockquote>




Also about feeding thereapy his dietician brought it up and asked if he bites and chews apples whole, also his can drink from straws and gu
Gum and bite hard candies they said it didn't sound like he had any food aversions or need for therapy.

user banned 3 kids; Washington 15083 posts
20th Sep '12

First off you are absolutely not a failure as a mother! A failure would be doing Nothing to help their child. You my dear are a great mom, doing everything you can to figure this out and get him growing.
IMO you are doing the right thing meeting a surgeon, getting your questions answered. Get as much information as you can, and make the best possible decision you can with the information you have at hand.

nikki0708 3 kids; Orting, Washington 176 posts
20th Sep '12

<blockquote><b>Quoting boobook:</b>" First off you are absolutely not a failure as a mother! A failure would be doing Nothing to help their ... [snip!] ... Get as much information as you can, and make the best possible decision you can with the information you have at hand."</blockquote>




Thanks! I just worry he's going to be traumatized by it and I read a lot of kids don't want to be held I can't imagine not holding him for days! :/ I don't want to see him in pain but I also know children's brains grow the most in first 5 years and to grow they need fat and he's just not getting that I'd hate for him to start being delayed!

user banned 3 kids; Washington 15083 posts
20th Sep '12

<blockquote><b>Quoting nikki0708:</b>" <blockquote><b>Quoting boobook:</b>" With my son, no g-tube. But we do pediasure. He ... [snip!] ... from straws and gu Gum and bite hard candies they said it didn't sound like he had any food aversions or need for therapy."</blockquote>



Did you seek a second opinion?

nikki0708 3 kids; Orting, Washington 176 posts
20th Sep '12

<blockquote><b>Quoting boobook:</b>" <blockquote><b>Quoting nikki0708:</b>" <blockquote><b>Quoting boobook:</b>" ... [snip!] ... said it didn't sound like he had any food aversions or need for therapy."</blockquote> Did you seek a second opinion?"</blockquote>




Yes I did actually and they asked so many questions and had me video tape him during a meal (which was really fun!) and said that he seemed fine so idk my DH wants to take him to children's hospital for a 2nd opinion on the feeding tube even though I've asked 3 different specialists so I'm guessing we will go before long lol

user banned 3 kids; Washington 15083 posts
20th Sep '12

<blockquote><b>Quoting nikki0708:</b>" <blockquote><b>Quoting boobook:</b>" <blockquote><b>Quoting nikki0708:</b>" ... [snip!] ... for a 2nd opinion on the feeding tube even though I've asked 3 different specialists so I'm guessing we will go before long lol"</blockquote>



Seattle Children's is an amazing hospital!
I'm surprised the feeding evaluation was done by video and not in person. My son was elvaled by a GI, occupational therapist and speech therapist for an hour using all kinds of food I brought in. Crackers, cookies, applesauce, fruit snacks, etc. to see how he reacted to everything individually. And after they discussed what they found with recommendations. I guess if they were able to see what they needed to that's all that matters. I just never thought they'd have a different way. I guess I just learned something new!

nikki0708 3 kids; Orting, Washington 176 posts
20th Sep '12

Yea I heard most people say they did it in person but it might be cause my husband is out of town most the time for work and so I'm alone with all 3 which would make it hard to focus on him while 2 others screaming lol! But yes I've heard. Nothing but positive reviews from Seattle children's!

mama3trish 3 kids; Ontario 9524 posts
20th Sep '12

If it were myself I'd have to do the g-tube. My son has serious food avoidance issues (Autism, and SPD) and he literally wouldn't eat off and on and was starting to lose weight. I was desperate so I stopped talking or discussing any food whatsoever. He still had to sit at the supper table but it was about sitting not eating (he hasn't eaten supper in 2.5 years). I finally found a book 'Just Take A Bite' that was somewhat helpful in reference to food avoiders. Have you ever considred that he has massive sensory issues and that he may just not associate the hunger pains with eating, and that food/drink in general may actually just repulse him? Once I stopped making 'food' an issue, and I would literally leave several kinds of food around the edge of the counter he started eating again. He even went from eating 1 food for 3 months to eating 7-9 foods every day. However with your son's size it is dangerous to take a gamble, and I would definately go the tube route. My friends son just had a g-tube due to heart issues and failure to thrive, and he has gained 2 lbs in 3 months (big weight gain for him), and they have had no issues with it at all.
You are not a failure, being a failure would be ignoring the issue. I wish you luck and if you ever need to talk I am here.