Hi- my 2 year old DD was recently diagnosed with Stage 3 CKD. While the news was unexpected our daughter is doing much better than she had been doing. We are lucky in that we have been able to manage her disease well by controlling her diet and getting her to drink at least 1.3 liters of water a day. However, she is polyuric, meaning that she excretes more than 1.3 liters of water a day and the doctor has recommended that a NG tube to be placed in. Our daugther had the tube placed in 2 weeks ago and it only lasted 2 days. It was very tramatic for her and us. Perhaps we will all be acclimated over time but the darn thing just seems so intrusive. Since that time we have really been pushing the fluids but we are still falling short of our target of 1.6 liters of water a day.
Does anyone have any insight into the "acceptance" process? Also does anyone have any handy tricks to tuck the tube away during the day so it doesn't get caught on anything when she is playing? It's just so hard to see that tube on her but we realize that she needs it in order to protect her remaining kidney function. The doctor has indicated that DD will need the tube for "a long time".
Thanks everyone for your responses! There is quite a bit of support to go the g-tube route. I had done some research on G Tubes and have brought it up to the doctor. She wasn't too keen on it as it is "invasive". However, the NG tube isn't a walk in the park either. It really seems like you can live a much more normal life with the G tube than the NG tube. And since my daughter is still a very active tot it just seems cruel to not consider the G tube. I'm going to keep pushing for the G tube and see how this pans out. Thanks again everyone!
I have a 7.5 month old with an NG Tube since birth. He is not a toddler and I know its worse as a toddler - easy to pull out. With my son, he pulls it out every week or so and I learned how to put it in myslef (no sedation). Let me know if you would like additional info. My son has it for a different reason....
Hi there, I don't have a child who uses either NG or G tube, but I had both myself as a baby,toddler, and child. I think it would be extremely less stressful on both of you to have the G-tube. Although it is invasive, once it is in and working fine will be so much easier and she won't even notice it. Even as 7 yo, I couldn't stand the NG tube, and putting it at first, and then back in when it came out of position was very traumitizing. My scar from the tube is the size of a pea, and I'm sure these days there is cosmetic surgery available to make it even less noticeable.
Best wishes!
A.
Hi L.,
I am not familiar with CKD. And I don't know if this is an option for children or for your child's condition-- however,ask your doctor if your daughter can have a G-tube (gastric feeding tube) instead of an NG tube. My only experience with G-tubes is that both my grandmother and father had G-tubes because of their conditions. NG-tubes were a discomfort for them. Keep asking questions and researching. Blessings.....N. B.
My daughter had 1 when she was 3 yrs old. She got diabetes at 2 1/2and 2 months later she turned 3. She would not eat and her blood sugars were always low. she was hospitalized again for that reason. She would not eat because of trauma so they put a ng tube in to give her body time to recover. They were able to stableize her blood sugars by giving her nutrients her in ng tube. It took a long time but she started to eat again and she eventally stablized. We have our ups and downs but we live day by day with her. Good luck. Jocelyn my daughter is now 8 almost 9 yrs old now and is doing as well as expected. She has a lot of problems but is doing well. She tollerated the tube because of the trauma she was sedated to put the tube in. She did fine once it went in. It takes time. Ask if they can sedate your daughter before they put it in. We did and it helped. Let me knoe M.
Hi,
No, I haven't had the NG tube for an infant, but I did have one with my Mother and I know how tough that was. I have a horrible memory of grabbing it by mistake at some point and nearly pulling it out. I can imagine how difficult it might be with a toddler and I hope you feel this great big, warm hug coming your way. I will keep you all in my prayers. Here's an idea that might help some. I work in the theatre and the performers often have to wear a power pack for their mics. Our "Rock Stars" have special tape to tape the chords (tubes) and we place the pacs in strategic spots that ride well and can't be seen. The cloth athletic tape or medical tape can give your skin trouble. Sometimes we use a body tape that folks use to put on their hair pieces . It is more gentle to the skin. Sometimes we make little cloth sacs for the stuff they need and pin that to their pants at at the small of the back with the rest fitting around the body with a little play for movement. Being a rock star, or a performer from a disney show or any other character needing a "power pack" might help your little one accept the garb and maybe even encourage more fluids. ( Sacramento Theatrical Lighting, if you are in the area, or Capital Costumes for the kinder gentler tape.) I also remember creeping up with Mom's fluid intake, Don't try for the whole thing every time but go for one more cc each day ( of course you need to keep in in the range that Doc says is best) Truly positive thoughts go out to you. Maybe getting creative will help her to embrace this new stuff that must be a part of her life.
Sun
Have you asked your doctor about a G-tube? It is a small mickey button that is inserted on the tummy right into the stomach. It is not noticeable with cloths on and very easy to maintain. Best to you. N. S
Ng (naso-gavage) or G (gastric)? An NG-tube goes through the nose and isn't permanent.
I am 38 and have a G-tube. I have seen many children who have had NG-tubes, and those who have been put on more permanent G-tube feeding.
I do not have experience with NG ad toddler, but have experience with children personally with PEG tube. If this is to be a while, it is more invasive to place, but a feeding tube to stomach may be easier for your toddler to take than NG tube. Also it can be flat in between feedings. I do not know if this would be appropriate for your child, but you may want to ask your health care provider about this.
Dear Laura, You can read about my son and my family at www.110mag.com online pages 86-89
My son had an NG for 1 1/2 years. Can she get a Mic-Key(feeding tube)button put in (not Mickey Mouse) it is a surgery but better then an NG tube. My son gagged every time we put it in which we changed it every month. We used pink tape and skin barrier for his face and then we used transpor tape to tape it on the back of his shirt as it hung down. If I was to do it over I would have had the feeding tube put in because it can always be taking back out but it has got to be better then constantly worrying about getting the NG in her lungs and coughin it out her nose. I would be more then willing to talk to you more about any issues you might have. Once you read our story above you will understand we have been through it all. Try Dr. Haddad in Walnut Creek for a GI appointment and opinion and see what he says. Blessings to you my friend
M.
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Hi L.,
Sorry to hear that your little one has CKD. I hope that you will be able to control it with diet for a long long time.
As for the NG tube, can you coil it up and tape it to the front or back of her shirt? that way, it will be out of her way, but you can still access it if you need it. You just have to remember to untape it before you change her clothes.
And if it really is for long term, the G tube may be the way to go. Talk to your MD.
Good luck to you,
G. RN
Since she's going to need it for a long time, why don't they just do a g-tube? It seems silly to put her and you through the trouble it takes to make sure it stays in - not to mention having to have it put back in if (when) it gets pulled out. With a g-tube you can give her a bolus of water whenever you want and you don't have to worry about all the other issues. I would talk with your GI doc about it.
My daughter came close to needing the NG tube. The website www.momswearingpuke.com has great information and a member forum you can request to join. It was very helpful to interact with other Moms who have had major feeding issues. It can be very stressful dealing with these issues and I really needed to know that I was not alone. Good luck.
