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G-Tube, need some help.
- Thread starter anonymous
- Start date
I used to have to do this. Go to the store and get a tea strainer...I think that is what they are called. Its like a little metal ball with holes in it. Empty the capsules into the strainer and drop it into the bad. Then while its running over night the capsules will disolve.
Margaret
Double lung tx 11.11.04
Margaret
Double lung tx 11.11.04
Jen,
My daughter Samantha also gets enzymes through the tube. Our nutritionist told us that this only works with Pancreacarb 4 enzymes. We switched from Creon 5's to Pancreacarb. The Pancreacarb "beads" are smaller. We mix 6 capsules with about 15-20 cc of applesauce (baby food). Then we transfer to a 20cc flat tip syringe that fits directly into the MicKey button. Usually we don't have a problem. She also gets 3 more capsules at the end of the feed.
If it does get stuck, we insert a 3 cc syringe of water to loosen it up, wait a few minutes, and then try again.
Prior to the Pancreacarb, we also tried Viokase powder. This powder form enzyme is mixed with water and then put in a syringe to be injected into the extension tube. Unfortunately, Samantha seemed to malabsorb a lot with the Viokase, but you might have different results. It is more expensive than capsule enzymes.
You might want to ask about putting the enzymes directly into the bag. Our clinic has never informed us about that method. They did mistakenly tell us to put the Viokase powder directly into the bag - which resulted in Samantha going to the hospital with a near blockage!
Maria (mom to Sami 2 1/2 with CF)
My daughter Samantha also gets enzymes through the tube. Our nutritionist told us that this only works with Pancreacarb 4 enzymes. We switched from Creon 5's to Pancreacarb. The Pancreacarb "beads" are smaller. We mix 6 capsules with about 15-20 cc of applesauce (baby food). Then we transfer to a 20cc flat tip syringe that fits directly into the MicKey button. Usually we don't have a problem. She also gets 3 more capsules at the end of the feed.
If it does get stuck, we insert a 3 cc syringe of water to loosen it up, wait a few minutes, and then try again.
Prior to the Pancreacarb, we also tried Viokase powder. This powder form enzyme is mixed with water and then put in a syringe to be injected into the extension tube. Unfortunately, Samantha seemed to malabsorb a lot with the Viokase, but you might have different results. It is more expensive than capsule enzymes.
You might want to ask about putting the enzymes directly into the bag. Our clinic has never informed us about that method. They did mistakenly tell us to put the Viokase powder directly into the bag - which resulted in Samantha going to the hospital with a near blockage!
Maria (mom to Sami 2 1/2 with CF)
I am so sorry for you and your daughters stakes it must be hard for the both of you yo get through this stuff I hope she gets the treatment she needs for her, and by the way my name is crystal lambert I am doing a reaserch on this and it frightens me to death about this stuff I been hearing.
Maria,
So, you put the applesauce with the pancrecarb through the tube? That is interesting, I didn't know they made a "flat tip" surenge that would fit directly on the tube. Seems like it would clog up, but if it worked for you I'm definately willing to give it a try.
Margaret,
I ordered the strainger off of ebay and I'm going to give it a shot when I receive it. I hope I got the right thing, this is a picture of it. It is made of stainless steel. Does it look right?
Thanks,
Jen
<img src="<a target=new class=ftalternatingbarlinklarge href="http://img.photobucket.com/albums/v655/jlphillips/tea.jpg"">http://img.photobucket.com/albums/v655/jlphillips/tea.jpg"</a> alt="Image hosted by Photobucket.com">
So, you put the applesauce with the pancrecarb through the tube? That is interesting, I didn't know they made a "flat tip" surenge that would fit directly on the tube. Seems like it would clog up, but if it worked for you I'm definately willing to give it a try.
Margaret,
I ordered the strainger off of ebay and I'm going to give it a shot when I receive it. I hope I got the right thing, this is a picture of it. It is made of stainless steel. Does it look right?
Thanks,
Jen
<img src="<a target=new class=ftalternatingbarlinklarge href="http://img.photobucket.com/albums/v655/jlphillips/tea.jpg"">http://img.photobucket.com/albums/v655/jlphillips/tea.jpg"</a> alt="Image hosted by Photobucket.com">
CFHockeyMom
New member
Hey Jen,
Andrew looks so good <img src="i/expressions/face-icon-small-happy.gif" border="0"> How are things going for you guys?
Andrew looks so good <img src="i/expressions/face-icon-small-happy.gif" border="0"> How are things going for you guys?
Hi Claudette,
It's going okay. I'm just having some issues with feeding, that's the story of my life lately.
Andrew is a rare case it seems because of the Cerebral Palsy AND CF, really makes for a bad situation. CP kids have feeding issues as well, which make it really difficult with the enzymes. I'm at wits end. I really need a break, sometimes I feel like I really can't do this, but some days are okay.
It's going okay. I'm just having some issues with feeding, that's the story of my life lately.
Andrew is a rare case it seems because of the Cerebral Palsy AND CF, really makes for a bad situation. CP kids have feeding issues as well, which make it really difficult with the enzymes. I'm at wits end. I really need a break, sometimes I feel like I really can't do this, but some days are okay.
Jen-
Sorry I haven't been on in a while. I'm home from shcool for christmas break and I refuse to use the internet in our house until my dad sucks it up and gets high speed (we still have dial up). Just me being a brat and making a point, so I have to drive to the library to use the internet. But in any case, that does look like the correct strainer. Let me know how it goes when you get it.
Sorry I haven't been on in a while. I'm home from shcool for christmas break and I refuse to use the internet in our house until my dad sucks it up and gets high speed (we still have dial up). Just me being a brat and making a point, so I have to drive to the library to use the internet. But in any case, that does look like the correct strainer. Let me know how it goes when you get it.
Jenn,
Here is a picture of the syringe we use that fits directly into the Mic-Key. Sami's Mic-Key size is a 14 Fr. 1.2 cm. Hope this helps.
Don't get too discouraged, you will find something that works for you and things will get better. This feeding stuff is stressful, though, I know . . .
Maria (Sami's mom)
Here is a picture of the syringe we use that fits directly into the Mic-Key. Sami's Mic-Key size is a 14 Fr. 1.2 cm. Hope this helps.
Don't get too discouraged, you will find something that works for you and things will get better. This feeding stuff is stressful, though, I know . . .
Maria (Sami's mom)
I agree about the cute kids. They are adorable! I also affirm you parenting a son with two chronic conditions. I know none of us signed up for this. I'll be praying that everything smooths out as much as possible and you are able to get some rest and renewal time
My 5 year old is about to get a G tube next month. Can I clarify which kind of enzymes fit throug you syringe? my son has my not so nice personality on awakening and if we don't have to give him enzymes by mouth when we turn the feeding off in the night it would be awesome!!!
My 5 year old is about to get a G tube next month. Can I clarify which kind of enzymes fit throug you syringe? my son has my not so nice personality on awakening and if we don't have to give him enzymes by mouth when we turn the feeding off in the night it would be awesome!!!
Jen.....my former Supervisor at work has a son a few month younger than my daughter & he has CP. He has not been diagnosed with CF although he was tested because of a pseudomonas infection he developed. He does the tobi & CPT etc. The last I heard they were checking on getting him a vest, but I havent spoke with her in a while so I am not sure what happened with that. He has a feeding tube & had an operation to close his esophaugus due to reflux which was causing a problem with his weight gain. Anyway.....my point is that event tho their son, Daniel, doesnt have CF he goes thru much of what we do & has the CP also. If you are ever interested in speaking with her for support let me know. I know there ia bunch of other stuff they went thru with him, but cant recall it all at the moment. Just thought in case you wanted someone who undertood the CP side of things. He turned 7 in August. Not bad considering they were told he wouldnt survive the first 24 hours of his life........