Re: G-tube questions

December 23, 2003

Gracie just had her G tube placed three weeks ago, and I am so glad we did it. She is 18 months old and still does eat by mouth all the time. We decided to get the tube for security and ease of life. She is on 9 different meds now, and was really having a hard time taking them every day. It was getting to the point where she would refuse to eat, because everything had something hidden in it. It is also there to maybe help keep her out of the hospital when she is ill. We can always keep her hydrated now, and feed her if she is too ill to eat. The only complication was that she got very infected after the surgery. The GI did not know exactly why it got so infected, but Augmentin cleared it up and life is good now. Since the tube I know she is getting her medicine with the correct dose and absorbing it all. I may be crazy but I really think I can tell the difference with her meds working better now. She is also eating better, since food no longer has medicine in it anymore. Our next adventure is waiting another month or so to change the tube into a mic key button. That will be nice, the onesies are getting old. I know its a tough decision, but for us it was the right one. Good luck.

December 23, 2003

,

Did Gracie have any trouble gaining weight prior to the G-tube? Was she in that awful termed category of "failure to thrive"?

Glad to hear the tube is working so well.

Anne R

December 23, 2003

Hi. My son Matt will be 3 in January. He stopped gaining weight at a year and eventually stopped growing.He wsnt even on the charts anymore. He finally had a g tube placed in July and it was the best thing we ever did. he had an infection after and ran a fever and nobody knew why,but the antibiotics worked right away. He was in pain after and was afraid when we had to clean it. He didnt like getting in and out his car seat because it hurt him. This lasted only for a few days and then he was fine. It has worked miracles. He has gained 8 pounds, and even grew alittle. From what I have been told, the height takes longer to kick in. His foot finally grew,too. The last time I took him for shoes I actually wound up crying in the shoe store because his foot hadnt grown,but this time it went up almost 2 sizes!!! The tube has been a miracle for . He looks so much better now and has more energy. Another thing is that it is great if you have to give meds or if they get sick, you can try to keep them hydrated. He had the g tube for 3 months and in October he switced to a mic-key button. The button is even better for Matt because there is no tube sticking out when he isnt getting a feed. The g tube generally has around 8 inches ot tubing that sticks out. It helps if you put a piece of tape around it and then pin it to the inside of the shirt,this way if it gets tugged on, it is tugging more on the shirt. I can explain this to you in more deatil if you want. Feel free to email me privately, too. Jill, Matts mom scad

December 23, 2003

Hi. My son Matt will be 3 in January. He stopped gaining weight at a year and eventually stopped growing.He wsnt even on the charts anymore. He finally had a g tube placed in July and it was the best thing we ever did. he had an infection after and ran a fever and nobody knew why,but the antibiotics worked right away. He was in pain after and was afraid when we had to clean it. He didnt like getting in and out his car seat because it hurt him. This lasted only for a few days and then he was fine. It has worked miracles. He has gained 8 pounds, and even grew alittle. From what I have been told, the height takes longer to kick in. His foot finally grew,too. The last time I took him for shoes I actually wound up crying in the shoe store because his foot hadnt grown,but this time it went up almost 2 sizes!!! The tube has been a miracle for . He looks so much better now and has more energy. Another thing is that it is great if you have to give meds or if they get sick, you can try to keep them hydrated. He had the g tube for 3 months and in October he switced to a mic-key button. The button is even better for Matt because there is no tube sticking out when he isnt getting a feed. The g tube generally has around 8 inches ot tubing that sticks out. It helps if you put a piece of tape around it and then pin it to the inside of the shirt,this way if it gets tugged on, it is tugging more on the shirt. I can explain this to you in more deatil if you want. Feel free to email me privately, too. Jill, Matts mom scad

December 24, 2003

No, she was never failure to thrive, but she was slow to gain weight. She was born in the 91% and now she is in the 50%, a drop but nothing to be excited about. The Drs. say this is pretty normal due to the mito and how sick she has been. The primary reason for the tube is the ease of giving her medicine. The tube is so great for that. For example, when she gets a shot she must take a large premed dose of motrin and hour before the shot and then every 6 hours for the next 2 days. Before the tube, this was awful to do. She would spit it out and then I would worry about it, the motrin protects her liver from inflammation. But now I am confident to get her shots without worrying about what they are doing to her, and know they are helping her. She also is taking 9 different meds, some are twice a day some are three times a day. The different dosing times gives me 4 different times a day for medicine. I do not know of many adults who would willingly do that. Now it takes less than 5 minutes, and no yucky medicine mouth. Hope this helps a little.

December 24, 2003

Anne,

My DD has had a g-tube since she was about 16 months old. She is now

almost six. It saved her life, much of her stature, and her intelligence. She

was about 14 pounds at 16 months. She is now about 40 pounds. is

eating most of her food orally now but still cannot eat enough to maintain her

weight. We stopped tubing for several months but she lost five pounds, so I

just started tubing her again.

My DD has GERD, even post Nissen and with meds. She has some hypotonia

issues, especially above the waist. She is mildly spastic below the waist.

We have had about every g-tube problem one can have. Our had to

have a new tube reinserted because of terrible granulation tissue. She

almost had to have it done again but we figured things out in time to avoid

another surgery. As a result, I know tons of tricks to avoid problems. If you

start to have problems, I may be able to help you.

I would never do an NG tube for more than a week or so. They are

dangerous and the risk of aspiration is high.

My DD is on periactin for migraine prevention. There is another med that

helps stim appetite. It is called megace. Have you tried that? We also use

feeding therapy. Our feeding therapist has done wonders. She has helped

me to feed . The stress about 's feeding is mine. has a great

relationship with food. I am very thankful for that. We also calorie load.

Have

you tried Carnation Instant Breakfast with whole milk and cream? Lots of

calories and it is really good for you. Unfortunately, our is lactose

intolerant.

Anne, I am so glad that we have the g-tube. Recently, a pulmonary hospital

suggested removing her g-tube. They figured that she would start eating

enough when we discovered that is lactose intolerant. I said NO. I

insisted that we had to go at least through a winter with all the winter

illnesses

before we removed it. Well, she has lost five pounds and we are using the

tube again.

Go with your gut about this decision. If you think that a tube would help you,

it

probably will.

December 24, 2003

We just made the decision to have a feeding tube placed. My son's

surgery will be this Jan 19th. He will turn 5 in February. This

was a HUGE decision for us. I really struggled with this. I

thought of feeding tubes as for the dying, but really in my son's

case it is so he can go on living. The other hard part for me was

that it was another piece of medical equipment to set my son apart

from everyone else. Now I laugh when I think about that. My son

has AFO's, wears glasses, takes tons of meds, is in a wheelchair,

and non-verbal. Like the feeding tube is really going to set him

apart from his peers ! What finally pushed us to have the tube

placed was the lack of weight gain (1/4th of a pound in a year), and

the running to the ER every month because he was throwing up and

dehydrated or seizing all the time that we couldn't get meds in. I

finally said enough of this. The tube will make our life a lot

easier. It really is a personal decision. You will hear lots of

different reasons why people choose to have a tube put in and how it

has benefited their lives. But in the end YOU have to be ready for

it. We were told at 6 months that he should have a tube, now at 5

we have finally accepted it and are ready to have the surgery done.

Good luck making your decision. No matter what you decided it will

be right for your child and your family.

Geri-Anne and Wyatt, Complex I

-- In Mito , AReckling@a... wrote:

> Hi,

>

> I have a son who will be 3 in February who is having a muscle,

skin biopsy

> done by Shoffner as well as a spinal tap (all of this to be done

in January b/c

> we're trying to rule in or rule out mito and other metabolic

myopathies as

> well as congenital myopathies). My son has had hypotonia since

birth, but what is

> really concerning now is his failure to thrive issues (dropped off

the growth

> chart where he used to be at the 75th percentile in height and

weight) and he

> loses weight when ill. He gained a pound of his lost weight back

but has not

> gained anymore. He is on Periactin as an appetite stimulant. Prior

to his

> recent gaining 1 lb. back after losing it, we were days away from

an NG tube which

> would move to a G-tube if he didn't start eating more.

>

> My questions to you are: 1. how did you make the decision to go to

a g-tube

> or some other medical feeding system (other than eating!) ? 2. how

old was your

> child? 3. what kinds of complications did you run into with the

tube, button,

> etc.?

>

> I'd really like to hear your stories as my husband and I struggle

to make a

> good decision about our little guy.

>

> Thanks,

> Anne R

December 24, 2003