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How to approach pedi about getting a gtube? - Page 2

post #21 of 63
It sounds like something that could be less invasively remedied by a sippy cup in a cooler by her bed.

And why not use something that keeps her blood sugar up for longer than breastmilk?
post #22 of 63
I am with Connor's mom- I fight tooth and nail not to get a gtube in my son. And if I called and agreed, surgery would be scheduled within an hour.

I agree with pp- perhaps a sippy cup with milk- maybe even hemp milk? would be an alternative to night nursing.
post #23 of 63
What do you feed her during the day that keeps her blood sugar going for the 2 hours? that would at least buy you a half hour longer than breastmilk does.
post #24 of 63
Most doctors don't go straight to a Gtube, that is super rare. She would have to be on an NG tube first to see how she tolerates tube feedings. You do realize that putting in an NG tube in a 3.5 yo is not going to be fun. Kids that age will fight it and pull it out. I'd seriously try other things before tube feeding.
post #25 of 63
Thread Starter 
We came up with an idea today that we've never considered since she was born with a milk allergy and milk products tend to have to much fat or protein anyway so it was a moot point. She's been stealing a toddler fist full of cheese here and there for a couple of months when I'm shredding it for me with no effect and we know she can take 1-2T of Yogurt. Were going to take it one step further when the nurse is here first thing in the morning so we have all day to watch. Were going to see if she can tolerate the amount of milk in those Kraft handisnacks chocolate pudding things. I already opened one up and mixed in the 2T of corn starch and dam if it didn't hide it without a problem. It never occurred to me to even consider that these might be an option since dairy is not on my radar as a food but these are both low enough in fat and protein to be ok and high in carbs to boot. I'm feeling hopeful since she's out grown her soy allergy and it looks like her squash allergy too recently. We'll have to wait a couple of days though, I got called to pick up a puking kid today
post #26 of 63
Yogurt and cheese would seem to be a healthier option than Kraft Handisnacks, which are primarily refined sugar?

I've got a diabetic kiddo and I'd never do pure sugar over more complex!
post #27 of 63
Why can't the 3yo have a sandwich at night if she can have them during the day?

And what are your plans for when she weans? At 3 she's not going to be nursing a whole lot longer, it's not like you'll be nursing her forever ykwim?

How do others with similar metabolic issues handle night feedings? What does your doctor recommend?

Going to a tube is a BIG deal, not a matter of convenience. And a tube isn't more convenient, it's much less so.
post #28 of 63
Quote:
Originally Posted by Theoretica View Post
And a tube isn't more convenient, it's much less so.
Amen. Then you have to worry about the tube getting disconnected and the kid getting hypoglycemic without you knowing. Leaking all over the sheets, it's a ton of laundry. Gross laundry. Not to mention it gets really annoying to have to make bags of formula, make sure everything is charging and plugged in, dealing with kinks, stoma infections, cleaning, granulation tissue, etc. Having a tube is a whole lot more work and less sleep than forking over a midnight sandwich is.
post #29 of 63
I think you're confused on how helpful a tube will be. I might sleep in slightly longer chunks, but its a rare night I get more than 3 hours at a stretch with DD, and now when she wakes, its screaming/crying/puking not just latch her on and lay there. Its far more disruptive to our patterns, but a g-tube was absolutely necessary so we deal
post #30 of 63
post #31 of 63
If she can do soy, Zensoy's chocolate pudding tastes good and hides stuff well, too.
post #32 of 63
post #33 of 63
Satori,

I think you should do whatever you can to get the tube. I'm not sure what your daughter has, but mine has MCAD. He is 2.5, and he drinks milk from a bottle at night--he still has the sucking reflex. I put some extra powdered milk and cornstarch in his bottles that I give him in the middle of the night. He drinks his nighttime bottles in his sleep, he does not wake up for them.
If I was in your situation, and could not rely on this milk, I would get the tube.
I know the suggestions were made with good intentions here, but I'm sorry, if I woke my little guy up for a sandwich, he would be super mad he was awake, and NOT eat the sandwich, it would be a nightmare. Really, you just can't wake them up for food--they NEED SLEEP!!!
As for the pump leaking? So set an alarm every 2 hours and check on it and go back to sleep.
Do you belong to the FOD mail group? If not, PM me and I'll give you instructions how to sign up--it is a support group for all FOD parents, and I guarantee you most of them would encourage the tube, as MANY FOD's have them. If I couldn't give Nick his special bottles in his sleep, I would do the same thing.
post #34 of 63
Thread Starter 
Quote:
Originally Posted by MomToNick View Post
Satori,

I think you should do whatever you can to get the tube. I'm not sure what your daughter has, but mine has MCAD. He is 2.5, and he drinks milk from a bottle at night--he still has the sucking reflex. I put some extra powdered milk and cornstarch in his bottles that I give him in the middle of the night. He drinks his nighttime bottles in his sleep, he does not wake up for them.
If I was in your situation, and could not rely on this milk, I would get the tube.
I know the suggestions were made with good intentions here, but I'm sorry, if I woke my little guy up for a sandwich, he would be super mad he was awake, and NOT eat the sandwich, it would be a nightmare. Really, you just can't wake them up for food--they NEED SLEEP!!!
As for the pump leaking? So set an alarm every 2 hours and check on it and go back to sleep.
Do you belong to the FOD mail group? If not, PM me and I'll give you instructions how to sign up--it is a support group for all FOD parents, and I guarantee you most of them would encourage the tube, as MANY FOD's have them. If I couldn't give Nick his special bottles in his sleep, I would do the same thing.
Thank you, yes I am a member and all I see are praises for the tube, I don't think I have ever seen a single parent on that group say they regretted it or suggested not to do it. No one there has ever mentioned what a pain the thing can be or about leaking or the other issues pp have mentioned here. The feedback from those parents is what I based my thought process on, from parents in the same exact situation dealing with the same issues. For now though were going though with the milk challenge on Monday when the nurse is here and hopefully all will be well and I can start getting the corn starch into her.
post #35 of 63
Thread Starter 
Quote:
Originally Posted by Theoretica View Post
Yogurt and cheese would seem to be a healthier option than Kraft Handisnacks, which are primarily refined sugar?

I've got a diabetic kiddo and I'd never do pure sugar over more complex!
She's not diabetic and treating her as such would make her sick. These kids LIVE on junk food diets. I know your trying to help but unless your aware of a cheese or yogurt with less then 2 grams of fat and 3 grams of protein that I can mix with 2T of raw corn starch and hide it well..

Quote:
Originally Posted by duchess_of_dork View Post
So you have a 9 year old responsible for the diet of a 3 year old who needs constant glucose monitoring?
umm no, your acting like I was asleep all day or something. I was wide awake and dealing with the kids. I was just doing everything from laying down. As I stated before the kids were not making enough noise to make me aware of the destruction.

Quote:
Originally Posted by Theoretica View Post
Why can't the 3yo have a sandwich at night if she can have them during the day?

And what are your plans for when she weans? At 3 she's not going to be nursing a whole lot longer, it's not like you'll be nursing her forever ykwim?

How do others with similar metabolic issues handle night feedings? What does your doctor recommend?

Going to a tube is a BIG deal, not a matter of convenience. And a tube isn't more convenient, it's much less so.
If they can't do the corn starch at bed time and the middle of the night they get tubes. As pp stated, its COMMON in FOD's with have a tube for overnight feeds. All I have heard from other parents with FOD's is the tube was a godsend and not a PITA that other posters here have mentioned. They've never mentioned leaking or infections or the other issues here. For 3 years all I've heard is how wonderful the tube has been for quality of life issues. Perhaps it would have been better if people shared there experiences with a tube (good or bad) rather then jumping to conclusions and jumping down my throat assuming I am nuts. I based my thoughts on talking to many other parents in the same situation as me and understanding the full risks involved when it comes to an FOD child.

Quote:
Originally Posted by ksera05 View Post
If she can do soy, Zensoy's chocolate pudding tastes good and hides stuff well, too.

Thank you! I would feel much more comfortable trying soy, I didn't even think about soy pudding. We've just added soy recently so I'm not really aware of whats out there beyond tofu and milk. I looked at the website and the health food store we shop at in the city carries it. We can't get down there for a couple weeks but a friend from there is coming up tomorrow, I'll have her grab me a pack
post #36 of 63
I think people don't often post the negatives about a tube because there's no point when there isn't a choice. I mean, my son would be long dead without one, so in that respect it's wonderful. But we do have leaks a plenty and that is pretty much standard no matter what kind of tube you have. And we've had staph infections, abcesses bursting in the tract, and often blood coming out from wearing on the stoma. And his stoma is very neat and clean and well kept. Those things just happen.

It's not all wonderful with no bad, but if you don't have a choice you just roll with it. But it's NOT without its downsides. It can be a royal pain in the butt sometimes. As far as sleep goes, it usually beeps at least once a night from getting kinked or something. And if you have to wake up every two hours to make sure it hasn't come unhooked, you're still not going to be getting a full night's sleep.

I'm glad you're trying something else first because it really is much easier to give a bottle in the night than to deal with the tube. I know it can sound wonderful when you're sleep deprived, but it brings its own issues.
post #37 of 63
I want to remind everyone that discussing posts made in another thread is against the UA.

Quote:
Do not post or start a thread to discuss member behavior or statements of members made in other threads or to criticize another discussion on the boards. Do not post to a thread to take direct issue with a member. If you feel a member has posted or behaved inappropriately in a discussion, communicate directly with the member, moderator or administrator privately and refrain from potentially defaming discussion in a thread.
post #38 of 63
Just saw this off the main page.

I don't know if you know this, but there are eggless custards are basically made by cooking cornstarch. Puddings usually have cornstarch in them as well. That's why they hide the cornstarch so well.

If the milk-based one doesn't go over well, you could easily make a batch of coconut pudding (tembleque) to get the cornstarch into her:

http://masalalover.wordpress.com/200...waiian-haupia/

Good luck!
post #39 of 63
Quote:
Originally Posted by noobmom View Post
Just saw this off the main page.

I don't know if you know this, but there are eggless custards are basically made by cooking cornstarch. Puddings usually have cornstarch in them as well. That's why they hide the cornstarch so well.

If the milk-based one doesn't go over well, you could easily make a batch of coconut pudding (tembleque) to get the cornstarch into her:

http://masalalover.wordpress.com/200...waiian-haupia/

Good luck!

The problem is, it is the raw (uncooked) cornstarch that is good for keeping blood sugar levels up. Once it is cooked it breaks down and takes less time to digest.
post #40 of 63
Quote:
Originally Posted by MotherWhimsey View Post
I think people don't often post the negatives about a tube because there's no point when there isn't a choice.

It's not all wonderful with no bad, but if you don't have a choice you just roll with it. But it's NOT without its downsides. It can be a royal pain in the butt sometimes. As far as sleep goes, it usually beeps at least once a night from getting kinked or something. And if you have to wake up every two hours to make sure it hasn't come unhooked, you're still not going to be getting a full night's sleep.

I'm glad you're trying something else first because it really is much easier to give a bottle in the night than to deal with the tube. I know it can sound wonderful when you're sleep deprived, but it brings its own issues.
Yup to this! Mt dd2 has thrived on the tube but I dont get more than 3 hrs sleep in a row.

Motherwhimsey, you forgot getting tangled in the cord, med ports coming open and trying not go get it caught when moving anywhere! lol. Its a circus getting babe plus diaper bag plus stroller PLUS feeding backpack hooked to baby out if the car! Its a comedy of errors here!
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