I can't think of a better place to ask re: gt button

[Laurensmom2004]

Lauren is 6 and still has her gt button......she's not ready to give it up yet and well it's sooooooo much easier to just put a little goofy juice in it to knock her out b/4 heart caths, etc. that I'm not complaining!!!

She used it exclusively her first 17 months and ever since then she's used it only for meds. We've never had any problems except for the occassional redness which with a little sensodyne cream would go right away.

But, now she's had this redness/rash around it for about 2 weeks. I've tried everything and cannot get it well!!! It doesn't bother her at all....it just looks awful! I took her to her surgeon's office that placed it - we still see them every once in a while for checkups and they thought it was just a little too loose and told me to come back in about a week if it doesn't get better Now "I" don't think that is the case.....I've changed her gt buttons for years now and we've never had a problem with them being too tight or too loose all it takes is a little water/taking some out!

So thought I'd see if anyone here has dealt with this!

TIA
Jeannie

 

[blessedmom4]

My Daughter (also a CHD child) has had her Mic-key since she was 3 months old. She is now 7 and uses it exclusively for hydration, occ. for meds (she has learned to swallow pills and except when she is not feeling well, takes them orally). I love her GT because it has kept her out of the hospital more times than I can count. I am all for keeping them to make life easier if they already have them!

Have you tried taking this GT out since the redness started and putting in a fresh one? If not, that is definitely what I would do. Lisa has only had a problem once in all the years she has had her tube and that is what I did, even thought the G-Tube was intact. I also used polysporin antibiotic cream until the irritation went away and she healed quickly. I just bought myself Sensodyne toothpaste at the store yesterday and had to re-read what you were putting on the area…it is early, lol and I knew you weren’t putting toothpaste on your daughter’s GT site. I think I need to go back to bed…

 

[Wee Annie]

Jeannie,

I don't know what Sensodyne cream is, but is it the same thing as Calmoseptine? We use Calmoseptine on my daughter's gt whenever it gets a little funky/red, etc (which luckily has been almost never!), and it pretty much always does the trick. I don't know if Sensodyne is pretty much the same thing.

 

[Laurensmom2004]

My Daughter (also a CHD child) has had her Mic-key since she was 3 months old. She is now 7 and uses it exclusively for hydration, occ. for meds (she has learned to swallow pills and except when she is not feeling well, takes them orally). I love her GT because it has kept her out of the hospital more times than I can count. I am all for keeping them to make life easier if they already have them!

Have you tried taking this GT out since the redness started and putting in a fresh one? If not, that is definitely what I would do. Lisa has only had a problem once in all the years she has had her tube and that is what I did, even thought the G-Tube was intact. I also used polysporin antibiotic cream until the irritation went away and she healed quickly. I just bought myself Sensodyne toothpaste at the store yesterday and had to re-read what you were putting on the area…it is early, lol and I knew you weren’t putting toothpaste on your daughter’s GT site. I think I need to go back to bed…

that is too funny!!!! I had just changed it about 2 months before this redness showed up....I may need to just change it again ugh
I completely agree with you about making their life easier......I was devastated when we discovered Lauren needed the gt...now I'm soooooo glad she's had it all these years!!!!!

Jeannie,

I don't know what Sensodyne cream is, but is it the same thing as Calmoseptine? We use Calmoseptine on my daughter's gt whenever it gets a little funky/red, etc (which luckily has been almost never!), and it pretty much always does the trick. I don't know if Sensodyne is pretty much the same thing.

I had to look up calmoseptine lol and yes sensodyne is pretty much the same thing....they gave a tube to us a few years ago when Lauren had a little redness. It's just a moisture barrier too. We're getting our pool water tested today to make sure that's not causing it. Next step will be calling them back....luckily it's not bothering her!!!
Thanks ladies!!!!!

 

[visitingapril09]

Getting a topical cream that also includes something for yeast might be something to try. We have a squirt of prescription powder for Andrew's, that is now discontinued, called Cicatrin.

 

[blessedmom4]

that is too funny!!!! I had just changed it about 2 months before this redness showed up....I may need to just change it again ugh
I completely agree with you about making their life easier......I was devastated when we discovered Lauren needed the gt...now I'm soooooo glad she's had it all these years!!!!!

All the advice above is excellent and as a GT Mom you are already a veteran with these tips…I will share that when Lisa’s GT caused the rash it had only been in three weeks that time…the balloon was obviously defective (unbeknownst to us when we put it in, it had a small pinprick leak) allowing in bacteria, yeast, fungus or something. When I took it out of her tummy, it didn’t look good to me! Because of her mitral valve implant, we gave her oral antibiotics as well. I know better than to take a risk and called the cardiologist to order us something (otherwise we wouldn’t have needed oral ABX). Within days it was as good as new, no rash and I was SO relieved! I did use the polysporin ointment sparingly around the site (I normally don’t use anything, because as you know it can often cause problems to the integrity of the balloon or tubing to use ointments).

I was like you when they wanted to put the tube in Lisa , I resisted that tube and cried over her getting it and NOW I now I LOVE it! ALL the doctors that have been with her from the beginning love to tease me about that fact,

I am so excited to read how your MAW trip progresses, it makes me happy to read all of the PTR and TR and how such deserving families get a bit of a break from all of the medical chaos!

 

[Kim in PA]

Our doctor prescribed cholestyramine / aquaphor ointment. I think the pharmacist had to compound it, but it works better than anything else and Ashley's Mickey looks great since we started using it.

I teach children with physical disabilities and I always have 1 or 2 children with Mickey's, and I am always surprised at how bad their button sites look compared to my daughter's. I really do think it is this ointment that makes the difference.

I clean the site first, then use one small split to apply some cream under the edges of her button and then use the other split around the button (we keep on split on at all times) and it looks great. Even her nurse at school was surprised at how we never seem to have trouble. I do change her Mickey once a month since our insurance allows for that.