Girls and GTube

[Lety]

My dd is 7 years old and her doctor wants to put the g tube as soon as possible. We tried many things to put more weight but nothing is working to make up for the calories she lost the last few months. I want to make sure I do everything possible to make this "new thing" as easy as possible. She is very conscious about her appearance and she is worried that the tube is going to make her look weird and something is going to " stick out" and her friends are going to make fun of her. I am worried about the medical issues that could happen. Please any advice will be greatly appreciated. What should I tell the doctors? Do they get constipated after the procedure? Do they have a hard time going to the bathroom after the anesthesia ? I want to make sure I don't miss anything when I talked to her doctors.

Me, mom to 7 year old DDF508

 

[Mommafirst]

My dd just turned 7, but has had the tube since she was 2. Yes, she had constipation issues something fierce the first month after the tube was placed, probably from the anesthesia. She also had a lot of acid reflux the first few months too. The button does stick out a bit in tight shirts, so we choose her clothes carefully. Most kids her age are clueless and don't notice it.

The button isn't ideal...you are trading "normal" for this thing, but it was (and still is) a huge help in getting and maintaining needed weight.

 

[mysticrose]

Both my DD's have feeding tubes, they got them right around 7ish. We didn't have any issues with constipation after the proceedures. My first DD had a fundoplycation done with her g-tube because she already had massive reflux. It was so bad she thought it was normal. My 2nd DD was able to have it put in with out a huge surgery.
One thing that helped both afterwards was a piece of spandex type material around the waist over the button to "hold the button in". It wasn't tight just a little added comfort that this new thing wasn't going to fall out. It helped them from doing the hunched over walk and after a month or so it wasn't needed.
As for "looking wierd" generally noone notices. They even do swimming and noone has commented on it. After awhile it become's a "normal".

They are 13 and 14 now. They aren't limited in any way by the tube, they just wear t-shirts that are a little loose. My 14 yr old has gotten into the habit of wearing a tight tank top under her shirts just for comfort and it tends to mask the tube a little bit more.

Jen mom to 4 kiddos. 3w/cf and 1 lucky redhead.

 

[chromeo]

That self conscious feeling never goes away I think, my friend has had a tube since she was 10 and she is 18 now, she still feels uncomfortable wearing a bathing suit or tight shirts. Although it is a very useful tool to gain weight, allows her to get those calories she misses out on during the day while she sleeps.

Best of luck.

 

[JennyCoulon]

My oldest son who is 13 has one as well as my 7 year old son. My oldest is very self concious about it b/c he is in middle school, etc. He has the mini-one button which I believes has the smallest profile and he wears the big band-aids over it to keep it close to his skin. He will even wear an Under Armor shirt that is tighter and the band-aid keeps it hidden. He swims with his shirt on which is okay and he just tells people that he feels more comfortable and they understand. My youngest could careless about who sees it, etc. which my 13 year old was the same way when he was that age. I think it is harder for girls definately but she has to understand that g-tube feeds=good weight gain which=good lung function. It is something that she will have to get used it but she will do fine.

Also Lety we tried everything else to get both of mine to gain weight and my oldest ended up getting so sick with strep, etc. that he couldn't fight it b/c he didn't have the reserve. We shouldn't have waited as long as we did with him and we didn't with our youngest. They are both growing and growing and their lung function is great. Lety understand that you did all you could and it is just part of the CF. Good luck and keep us posted.

 

[Lety]

Thanks so much for all your answers. I feel a lot better knowing that other have been through the same experience and had good results. I went on line and learned that there are 3 different methods to place the g tube :

G-tube Placement Alternatives

• Stamm gastrostomy - open surgical procedure
• Janeway gastrostomy - laparoscopic procedure
• Percutaneous Endoscopic Gastrostomy (PEG) - endoscope or image-guided radiography to insure proper g-tube placement

Which alternative did your kids use?

 

[JennyCoulon]

When our oldest got his about 8 years ago he got the Stamm I believe. When our 7 year old got his this past July he got it lapriscropically. They said it is much less abrasive and the recovery time was less than when our oldest got his. I would do it the easiest way and once you meet with the surgeon you guys will figure out which is the best option. Good luck