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February 2012 Moms
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G tube

preggersINschool25preggersINschool25 member
in February 2012 Moms
I have been posting on special needs boards and I'm not getting any responses... so I figure I'll post here too on the off hand chance someone here can help.

I'm 99 percent positive that we will be getting a g tube. I have been on feedingtubeawareness.org and I have their list of questions to ask the doctor.

But I need to know if there anything else that i should know or ask before getting the tube? Are there any other good websites for kids with g tubes?

I usually do a lot of research before doctors appointments, and for some reason I still feel really unprepared. We meet with the G.I for the first time on Tuesday.

Our developmental pedi and dietician are the ones recommending the g tube based on his consumption. We are at 17oz of pediasure a day on average and that is feeding him mainly while he sleeps. He is barely eating any food, purees or bites. His feeding issues started around 5 months and have progressively gotten worse.

I am concerned that the lack of nutrition is contributing to his delays.


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Re: G tube

  • heymommyheymommy member
    I wish I could help but I have zero experience. I'm sorry he his not eating enough. I hope the feeding tube helps.
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  • liberty95liberty95 member
    I have no experience with pedi g tubes, but I work with them a lot with adults. I also teach nursing, so I teach new students about them each semester and they always say how much easier they are to care for than they originally thought they would be.
    I know the stress of it being your child can't be overstated enough, but from a purely technical standpoint, once you are educated on how they function and how to trouble shoot you will quickly feel confident in your skills.
    Good luck to you and Grant, I know this has been a long road for you guys!
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  • preggersINschool25preggersINschool25 member
    I have not seen that website thank you. Our situations are different but it was nice to see someone else with a healthy full term baby have struggles too. Well, you know what I mean...

    I did appreciate her advice that she listed too. Thanks again.

    Keep 'em coming bumpies!


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  • thanxbabythanxbaby member
    Did you ever look into tongue tie causing some of the problems with eating? So much of what you have talked about sounds familiar. DS was in the 90th at birth for weight and length and at 4 months his growth started to slow, was unable to take in as much from the breast as he needed as my oversupply evened out and he had to actually work to get milk. Solids were awful because of his high palate due to the tongue tie, and he would gag or push foods to the back of his mouth. We're still struggling but he gets in the bare minimum and another revision of his tie might make the difference for us. Anyways, I'm really curious if you looked into this and ruled it out already. At least 4 different doctors missed the ties with my DS and DD we just discovered at 4.5 yrs. when the tongue is restricted it caused tension within the rest of the body, and the body will compensate for that restriction. Can cause speech, gross motor delays , etc. if you want any more info let me know and good luck.
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  • preggersINschool25preggersINschool25 member
    I didn't really feel like the tongue tie issue applied to us, but I'm currently in the "rule everything out" phase.

    What type of doctor or therapist saw the tongue tie?


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  • slv0606slv0606 member

    imagepreggersINschool25:
    I didn't really feel like the tongue tie issue applied to us, but I'm currently in the "rule everything out" phase. What type of doctor or therapist saw the tongue tie?

    DS was born tongue tied, shortened frenulum. One of the 4 pedis in his group caught on to it. We were referred to  a pediatric ENT who resolved this issue or us.


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  • pennyandandypennyandandy member

    imageliberty95:
    I have no experience with pedi g tubes, but I work with them a lot with adults. I also teach nursing, so I teach new students about them each semester and they always say how much easier they are to care for than they originally thought they would be. I know the stress of it being your child can't be overstated enough, but from a purely technical standpoint, once you are educated on how they function and how to trouble shoot you will quickly feel confident in your skills. Good luck to you and Grant, I know this has been a long road for you guys!

     All of this. I have has students with gbtubes before, usually a Mickey button, but usually our school nurse deals with the maintenance of that. I was always kind of scared about it, but it was never as big of a deal as I made it out to be.  

    I do have a friend whose ds has a g tube-let me get her email and I will pm it to you-she's super sweet and would be glad to answer some questions for you. 


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  • emschottemschott member
    imageslv0606:

    imagepreggersINschool25:
    I didn't really feel like the tongue tie issue applied to us, but I'm currently in the "rule everything out" phase. What type of doctor or therapist saw the tongue tie?

    DS was born tongue tied, shortened frenulum. One of the 4 pedis in his group caught on to it. We were referred to  a pediatric ENT who resolved this issue or us.

    DS was also born tongue tied.  He wasn't nursing well right off the bat, and he had a procedure done the day after he was born. I honestly don't remember who caught it and I have no idea who performed the surgery. He immediately started nursing better.  He still is not a good eater and I think his weight may be similar to Grant's. At his 12 month appointment (which was actually 12 months 2 weeks) he weighed 19lb 4oz. I still nurse him multiple times overnight because he is a poor/disinterested eater. My pedi said I can quit feeding him at night, but I don't feel comfortable with that. He's super skinny.  That said, I know nothing about G tubes.  Good luck!

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  • thanxbabythanxbaby member
    I knew DS was tongue tied at birth thanks to the lactation consultant at the hospital or else I would still be blaming myself for all the struggles it caused us like I did with my DD. not knowing what the real issue is must be so hard for you. Dr. Kotlow is THE person to see for tongue ties, you can search for some of his articles that list symptoms, etc. Pediatricians and even most dentists are worthless in properly diagnosing tongue ties. Lactation consultants even though you're not nursing are an option to diagnose as well. I emailed Kotlow photos and he was very quick to respond, this way I didn't have to make a 5 hr trip for no reason. There is also a Tongue Tie Babies support group on Facebook that is extremely helpful, they could answer your questions and many people post pictures there for others advice. One thing you might check is lifting your DS lip, if there is a lip tie you are almost guaranteed you have a tongue tie.
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