5 year with G tube and adjustment problems

[anonymous]

My 5 year old has cf. He was diagnosed at birth and has been doing treatments and enzymes since then. He basically doesn't know anything else. He just had a G tube put in this past winter, but refluxes so much that we don't think that night feedings are really helping in his weight gain. He started kindergarten this September and seems to be adjusting ok except for the coughing in class. He has been in the hospital 5 times and has pseudomonas. We just had a 2 week stay and he is still coughing alot. His doctor thinks that a lot of his coughing is due to trying to get attention (we have a 2 year old, (no cf) and she thinks he is very jealous of him). She also wants us to get him in some sort of counseling.

My problem is basically. I feel like when I talk to the doctors about his symptoms that he is the first CF child that they have had to deal with. and this is a big CF clinic. For example, he is pancreatic insufficient and needs enzymes. Well, when we started with the night feedings, they couldn't figure out how to give him enzymes through the night. It took us about 2 weeks to find an enzyme that you could put through a G tube. He also refluxes and it doesn' t seem that either the Pulmonologist or the Gastroenterologist can figure out why. Also, we wanted to try the vest out and when we approached the dr and respitory therapist about it, they brushed it off.. It took pulling teeth for them to finally agree to letting us try it and it has been working out great. He is also a very hyper child. I basically want to know if anyone else has these sort of problems.

 

[anonymous]

Hi- I think sometimes all of us feel like you do. CF is such a mystery sometimes, even to the doctors. Some questions that you might ask the doctors if they haven't been addressed already: Have they done a bronchoscopy? Sometimes they find a bacteria that is deep down in the lungs and has not been caught in a throat culture. I'm assuming he has done rounds of IV antibiotics. Maybe they are not addressing the bacteria that is causing the cough. Also, has he ever done more than two weeks of IV's? Our daughter's last round of IV's needed to go three weeks before she really responded well. Since then she has done much better.

The second thing that came into mind is that maybe the cough is solely due to reflux. Did he have a Nissen done with the g-tube? A Nissen ties off the esophagus in a manner that things can still go down but acid reflux does not come up. My daughter has a g-tube but didn't need a Nissen. However, the doctors told us that if her reflux worsens she could need a Nissen.

My daughter does night feeds also with the g-tube. Initially we gave enzymes at the start and the end of the feeds. Now we only give enzymes at the start of the feeds. Our CF team also seemed to be guessing a bit when we first addressed this issue. I think every patient must respond a little differently. She also gets Nutren Jr. for her night feeds. We were told this is the best for g-tube feedings because the fat is broken down in a manner that it absorbs better without as many enzymes.

The fact that the doctors think your son is coughing for attention concerns me. Our doctors take every cough seriously. I guess another option would be to take him to a different clinic for a consultation. They might address things differently and more effectively.

Take Care,

Maria (mother of three daughters, the youngest, Samantha w/cf)

 

[anonymous]

Pardon my ignorance, but how exactly does a g tube work and how do kids sleep without it getting tangled up? <img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[anonymous]

That's a good question.

G-tube feeds can consist of continuous night feeds or short "bolus" feeds during the day. We only do the continuous night feeds. Basically, there is a short (about a foot long) tube attached to the Mic-Key button (on her abdomen). That tube is attached to a longer tube (about three feet) that runs through a feeding pump and up to the feeding bag attached to an IV pole. We input the dose and rate every night and the pump continuously drips for about six hours. It beeps loudly if there is a flow problem and beeps when the feeding is done. (I have woken up from many dreams where something is beeping and beeping . . . only to realize that it's the pump!)

Samantha does get tangled up many times. She is an active 21 month old and moves around quite a lot when asleep. We listen to her on a monitor and if I hear too much movement I go and check on her - OR I just sleep with her! (She sleeps in a bed.) One night I awoke to find the tubing wrapped around her neck twice. There are other nights that she doesn't budge the entire time. So it can be a little nervewracking. It would be great to hear any ideas to prevent the tangling.

One thing I can say, since the g-tube placement, Samantha has gone from the 6% to the 35% on the growth chart. She is also doing much better with respiratory issues. It took me a long time to agree to place the g-tube, but I am glad that we did.

Maria (mother of three daughters, the youngest, Samantha w/cf)

 

[anonymous]

I just read your post and felt compelled to respond. My grandson, w/cf, age 10, just got his g-tube in September 04. He was having problems thriving, his weight was down to 44 pounds. With his g-tube they also did a fundal ligation, which prohibits reflux. I don't know if this is the same as the "nissen" mentioned in the other post. He is fed only at night. His enzymes, (vericase) are crushed in a pill pulverizer and added to his formula, so the enzymes are delivered with the formula. At first we had some minor problems, with leaks, but have those problems solved. Now we only have to take care that he stays clean on his skin under his button to prevent soreness. We love his tube!!! His weight has increased, he now weighs 60 pounds, and his generally health has improved also. I would talk to the Dr. about the enzyme problem, possibly angling his bed at 30 degrees to prevent reflux, and would definately insist on taking his coughing more serious.

 

[NoDayButToday]

Maria,
I've had dreams like that too LOL. I also have a G-Tube, but I'm a little older, and don't move much at night (though I have rolled over onto it and blocked the flow a few times). But I can imagine how worrisome and anonying it is to worry about a toddler getting tangled up in it. Maybe you could place some fabric loops along the side of the mattress (maybe with velcro?) and thread the tubing through there, so there isn't so much of an oppurtunity for her to get tangled in it; but since it's only threaded through a loop and not say, taped down, it has a little more give for her to roll over and stuff. Good luck.

PS: I also only do night feeds

 

[anonymous]

Don't mean to state the obvious, but your son should be taking acid reducers. It's pretty common and I imagine your son is already taking them. My son takes 1 Prevacid a day - but he hasn't had much trouble with reflux, the Prevacid was mainly to help with his enzymes. If your son is not taking them and he is having this many problems - then your doctors really screwed up. Many people with CF take acid reducers.

 

[anonymous]

He is taking prevacid 2xs a day..Morning and night...I have a Gastro drs appt next week, so I will mention the Nissen procedure..Is that anything like changing the G tube to a J tube...Something about changing his tube to lead to the intestines so he doesn't reflux??? Anyway..He still isn't gaining as much as I would like...Since February, he has gained 6 lbs.. We do have his bed slanted upright slightly.. He is taking Peptamin JR, which is like the Nutren jr.. and We were doing the enzymes before and after, but now we put Viokase powder and mix it with the peptamin to run through the night..How much formula does your child take through the night??? Danny takes about 16 oz through 10 hour period...Real slow rate or he throws it up...Thanks for all your info everyone...

 

[anonymous]

Samantha takes about 13 ounces over a 6 hour period. It's about as much as she will tolerate. We tried to do more but she would wake up crying and very uncomfortable. (Our CF team wanted her to take 16 ounces.)

I think the J-tube is different than the Nissen, but you should ask to make sure.

Coll- nice to hear that others share my "dreams" - Hah! Thanks for the advice, too. I think she is adjusting to it now. She seems to stay put more often.

Maria (mother of three daughters- the middle, Alex, who just survived a bad case of the flu (despite getting the shot), and the youngest, Samantha w/cf who thankfully didn't get it!)

 

[anonymous]

I'm a pediatric nurse and have a child with CF. I have a little insight into the parent side and the healthcare side. Reflux is commonly treated with meds unless it is severe. If severe, the procedure is called a fundoplication and can be done with or without a G-tube. One type of fundoplication is the Nissen. This procedure is done often here (where I work) and is laproscopic. Severity of reflux can be diagnosed with a pH study which is a 24 hour study done inpatient. It can be helpful because a lot of kids have coughs or other problems which turn out to be due largely to silent severe reflux. The pH study compares how often the patient refluxes while upright or flat, awake and asleep. I hope this has been a little helpful. If there are any other questions, I can try my best to tackle them.

Stephanie

 

[anonymous]

Hi. We had many of the problems you describe. Getting the reflux issue under control was really hard but essential. My son had a Nissen and g-tube at 18 mos and the Nissen had to be "revised" a year later, but has held since then. He also takes Reglan(to speed up stomach emptying) and Zantac(for acid reduction). He is seven and gets overnight feeds-only 8 oz! /8hrs-because we are very paranoid about stressing the fundo and continued reflux. If he coughs at night, we turn the pump off immediately until he stops. He also gets daytime boluses, which helps to make up the volume. As far as sleep goes, adjust the rate so it runs for 7-8 hrs so, if there's no problem-you can sleep! For enzyme, we mix Viokase w/ water and give it w/ a syringe thru the connector at the start and end of the feed, but it's always mixed within 5 min of using it. He also gets about a teaspoon of oil at that time(for calories), and we mix Duocal(a calorie powder) w/ his feed. We resisted the Nissen/g-tube thing for about 6 mo.initially,trying NG and NJ tubes. We had alot of trouble keeping the J end in place-don't know if thats a problem w/ GJs.
It would seem that if he's throwing up his feeds-ever- he's got a problem that needs to be addressed and that nighttime feeds could make him very sick. Keep after an answer that works for him- the docs could be more aggressive finding the root of the problem and solutions. Good luck-its a tough nut to crack!

 

[anonymous]

Hi everyone,

I've noticed a lot of you use the Viokase powder with the night feeds. We still use Creon pills at the beginning of the feed. We whisper to Samantha to take her enzymes and she opens her mouth in her sleep. Then we rinse with water in a syringe. I've always thought this is probably not a good situation for her teeth. My questions are: Have any of you started night feeds with enzymes and then switched to the Viokase? Have you noticed better absorption? Our clinic has never mentioned Viokase and I was just wondering if it is more effective.


Thanks!

Maria (mother of three daughters, who including Samantha, unfortunately ALL ended up with the flu)

 

[anonymous]

We originally started with the creons. He would take them at night before the feeds and then in the morning. But it became too much of a fight everytime.. I would have to wake him up and it was just too hard. Then we tried a another enzyme that we were supposed to be able to just push through the Gtube, but it would always get clogged and just make a mess.. Our Gastroenterologist is the one that introduced us to the Viokase.. First we started just putting it in at night before the feeds and then in the early morning.. But then he said, we could mix it in the bag and just let it run its course... I think it is great. We have been using it since February and don't notice any difference with the Creons...He still does creons during the day.. I think it may be fairly new... and it can only be used via gtube and not orally...Hope this helps...