G-Tube, need some help.

[anonymous]

HD - the enzymes that will successfully go through the MicKey button are Pancreacarb 4's. There is also a powdered enzyme called Viokase that can be mixed with water, put in a syringe and given in the tube.

To the last poster- Is your child pancreatic sufficient? Or are you using a special formula?

Maria (Sami's mom)

 

[anonymous]

I have informed his CF team of the difficulties I am having and NOBODY has mentioned changing enzymes for formula???? The ONLY thing that has been mentioned to me is the posibility of changing his button, by performing some strange procedure which would widen the opening on the button which is inserted into his stomach????
I am going to call tomorrow and try to find out why Andrew can't have a different formula or enzyme. He is curently taking Pancrecarb MS-4, they are very tiny little beads but they won't go through the tubing. His formula is Pregestimil 24 Calorie.


Previous Anonymous Poster -
My son has to have enzymes. When we brought him home after the g-tube was placed he wasn't yet on enzymes, as a result he lost a pound and a half, and his bowel movements were watery, we were so frustrated. After he started with the enzymes he hasn't lost any weight and has gained back the weight he lost plus some.
We do not put "food" through the tube, it's formula. I'm not sure exactly what you meant but he is only four months old and he is on a continuous feed for 16 hours a day. So, I have to put enzymes through the tube.

Jen

 

[HD]

Ian was on the dreaded Progestimil for a year. Can't they do anything about the smell???/ anyway, we never gave him enzymes for it. the nutritonist said it would be optimal if we could, but if he was gaining without, then fine!

thanks for your answer Maria!

does anyone have any info on the new enzyme coming out? TeraClec I think it is called. You only have to take one with meals no matter what you eat and so you don't have to worry about giving too much for the weight. I have no idea about the size however. I think I 'll do some reasearch.

 

[anonymous]

Sorry to be listed as anonymous but I never registered.

My daughter does use enzymes for everything else (creon 10). However, she has been able to gain weight from the Gtube without enzymes. Her formula is called Novasource. It is not a special predigested one just high calories.

Just a funny note, Tina loves to get up and down from bed all night long. When she initially got the tube, I was so excited because she couldnt get up and down anymore without me. Well, fast forward a few years and now the little whippersnapper hooks it up and shuts it off all on her own. She is 9!!

Signed *** Debra (Mom of Three - Two girls w/CF one boy w/o)

 

[anonymous]

Debra- thanks for clarifying. Wow! It's pretty amazing that she gains weight and absorbs the night feeds despite the lack of enzymes. She must have some pancreatic function, that's great!

I anticipate that my daughter Samantha will be hooking up and shutting off on her own some day soon. For now, she wakes up and screams, "Mommy, I want to get out of my bed!"

Maria (mom to Sami 2 1/2 w/CF)

 

[HD]

that's one of the things I'm trying to figure out. Ian likes to get up in the middle of the night and come into our bed. I'm thinking at 5 years old he is unlikely to be able to unplug the machine, get out of be and bring it down the hall by himself. I guess we'll be getting up in the middle of the night again! Oh what fun

 

[anonymous]

That's one of the toughest things for me, the getting up in the middle of the night. Sometimes I hear that machine going off in my head, and it isn't really beeping, am I going nuts or what??? I use to be such a sound sleeper, now I wake up if the wind shifts. Most every night I stay up until 1 am, that way I'm up when it goes off the first time, then I refill it and go to bed for 4 hours, get up do it again, and so on. I think I could do it in my sleep, and probably have.
Jen

 

[anonymous]

There are enteral formulas available that do not require the use of enzymes. I posted once before that my daughter is on Peptinex and has never had to receive enzymes with her feeds and she has gained 28 pounds over the past 6 months. She does require the use of enzymes (Creon-20) with anything else that she ingests.

 

[HD]

Peptinex, thanks! I'm going to write that down and ask the nutritionist. Still doesn't solve the getting up in the middle of the night does it.... sigh

 

[anonymous]

HD-

Think of it this way . . . maybe when Ian realizes that he "can't" get up in the middle of the night and go to your bed . . . he'll stop trying! So it might just solve your problem afterall!!!!

We have actually had nights where Samantha sleeps between my husband and I with the continuous feed going throughout the night.
Talk about trying not to move!

Maria

 

[HD]

I think that's actually what we are going to do at first. Ian had a NG for a year when he was diagnosed at 6 months and he slept with us because he was so little he would get the tubing all wraped up including around his neck! For the first few weeks I think we will have him sleep with us. He is going to be pretty freaked out and I think we will all get more sleep that way. Hopefully then in a few weeks we can get him back in his bed. It is one week until he goes in. I'm getting nervous!

Heather

 

[anonymous]

Hi all. Just my two cents here. My son, now eight and a half, has had a g-tube and overnight feeds since he was eighteen months.
As for the enzyme question, we were initially told that he didn't need enzymes with his feeds, as it was "elemental", or broken down already, but we wanted to give enyme anyway to avoid any malabsorption issues and maximize the nutrition he got from it. We were given Viokase and told to give it at the beginning of the night/feed. This didn't make sense to us either, so we gave it at the beginning and the end. We make a suspension of about 8cc water and 3/4 tsp of Viokase and deliver it via extension tube, then hook him up.
Now, ideally, if you accept this logic, you should give enzyme halfway through BUT there's a limit to what you can do and survive long term! We needed some sleep and this seems to work well. Ditto for refilling the bag half way through the feed. We've always filled the bag with the whole feed and let it run over about seven-eight hours with no spoilage problems. This allows the parents up to about seven hours of sleep at a time (on an ideal night. Who has those?) Doesn't that sound wonderful?
His formula now is Peptamin-I think there are any number of "elemental" ones out there.
Also, we have been told by more than one person (nurses, nutritionist etc) NOT to put his enzyme IN the feed-either the Creons or the Viokase, as they will lose potency.
I have no answer to the phantom alarm syndrome, as I hear it too!

 

[anonymous]

Hi --

We run our machine for 10 hours and have never had a problem. We hook up around 9 and it runs until 7 am. ( pending Tina getting up and down all night ) Spoilage was never an issue. This was how we were trained to do it.

I think you should definitely talk to your dr. about having to get up and down to replace the bag.

You need to get your rest, too!!! Debra (mom of two girls w/cf)

 

[HD]

Did your daughter still eat breakfast if it ran til 7am?. That was one issue about running it until 7 was that he might not want to eat breakfast.

heather

 

[anonymous]

Hi Heather,

We find that Sami is not interested in breakfast in the morning after her continuous feed.

Another idea for the getting up at night issue- when Sami graduated from her crib we bought her a full size bed instead of a twin. That way if I needed to sleep with her during her feeds I had room to sleep. It was also easier for her to adjust to me getting out of her bed instead of her getting out of mine. Hope that didn't sound too confusing!

We also keep the monitor on between our rooms all through the feed. That way I can hear if she is restless and moving around too much. If that is the case, I always go in and check on her. I too have found the tube wrapped around her neck!

Maria (local Chicagoan, well the suburbs actually)

 

[HD]

Maria, thanks! I am also a Chicagoan, although in the city limits.

Ian doesn't eat much breakfast as it is and I hate to completely cut it out. Maybe if we turn it of when we get up at 6. I wish they could tell you how it would work best for your individual child! Of course I also wish I had thin thighs, so oh well! I think we will have him sleep with us at first just so we all feel better, then we will try and transition him back to his bed in a few weeks. The monitor is a good idea, although I'm afraid I'll be fixated on it! Ofcourse I usually wear ear plugs because my husband snores, so that may work becasue than he will be the one getting up if the alarm gois off!!!!<img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[anonymous]

If you get the enteral feeding in "Ready To Hang" bottles you do not have to get up in the middle of the night to refill your bag. I also get the phantom alarm sounds in the middle of the night. Then again I also have the phantom cough sounds and phantom difficulty with breathing that will make me jump up out of a dead sleep in the middle of the night. Then when I check on my daughter she is sleeping peacefully.

 

[JazzysMom]

I have that phantom sound problem except mine is my name being called. My daughter doesnt have CF, but I swear she talks in her sleep because I WILL hear my name & wake up, go running & she is sound asleep!!!!!!!!!!!!!!!!

 

[anonymous]

So are you guys saying I don't have to refill in the middle of the night? I can leave formula out for more than four hours??
Did any ones child spit up a lot at night, due to reflux and what not?? I find that if I shut the machine off after it empties, then wait about an hour before I start the next bag, he doesn't spit up that much. But if I continuously feed without a break he sometimes spits up a whole bunch and will be soaked in the morning. As of right now he is not getting as many mL an hour as he should so i'm afraid to decrease. Any suggestions??
Did anyone ever try the "tucker sling" basically a device used to prop the baby up in bed, it's like a big wedge? Just wondering if anyone had any luck, or saw improvement?
Jen

 

[anonymous]

Yes, both of my girls have a bed wedge (under the pillow area). I think it helps with sinuses also.

My daughter does NOT eat breakfast before going to school but will then eat a snack and a full lunch.

We do have the reflux thing going on but it does seem to get better as they get older. On occasion, she does vomit up her feed in the am. But, we do not get up and down at night to change the feed. As I said before it runs from 9 pm until 7 am. No beeping... no changing anything. Instead of using an IV pole to hang the formula, a few friends bought us a pretty coat rack and we use that. We open the cans fill them into the bags and away we go.

Dont take this the wrong way, but I would like all you moms to relax about this. You are going to wear yourselves out and that is no good for anyone. Get some sleep... stop jumping up and down. They will be okay!! Also, keeping the child in the bed with you during the feeds is going to make the transition back into his bed even harder. If you act like this is normal and not out of the ordinary your children will treat it that way also.

I know it is hard. When Tina got her tube, I was sooooo freaked out. But, as time went on it became a way of life. It isnt going anywhere so it has to be adapted into YOUR life not Your life has to be adapted to it!! Just my opinion -- Deb (Mom of two girls w/cf one boy w/o)