Re: Problems with g-tube

[Guest guest]

Hi M-Jane,

My son has a J-tube. The J-tube is further down the intestinal tract

past the stomach. However the best thing to put on the site is any ointment

with a high concentration of zinc oxide. The same as what you would use for

diaper rash. We use Desitin. We have had to use Silver Nitrate sticks a few

times to get rid of granuloma tissue but afterwards apply the cream and then

a gauze dressing over the cream. Hope this helps. Don't have much

information to help you with the vomiting though since Lucas is J-tube fed

and does have severe reflux as well as poor stomach emptying. Best of luck,

Loriann

[Guest guest]

Hi,

My daughter has had a g tube for 4 years now. She had a fundoplication following her g tube to control the reflux isue.

Fortunately for her, she has been great ever since. I take the no fuss approach to g tube site care. Wash with warm soapy water in the bath, pat dry, and leave open..no dressings. When it was red and raw in the early days I used paw paw ointment, which has a natural antibiotic property. Be sure to wash of what ever cream you do put around the g tube site, as a build up of cream can clog pores and cause further irritation and infection. I clean the site every nappy change with a damp wash cloth..then dry (a bit like wiping a childs nose when it runs!).

Some children take a while to adjust to the tube placement..keep trying small meals/drinks (both tube and orally) often, rather than regular size meals, and slowly build up the quantity as tolerated.

Can't offer much else, but be sure Drs have checked all causes of possible nause.

Thinking of you at this difficult time,

ne

(in Australia). Mum to Gaby 6 years, mito disorder, ketogenic diet, G Tube, microcephaly, global delays, and the prettiest smile.

[Guest guest]

Hi Jane,

Just wanted to let you know we are praying for you

and yours.

Hugs,

Horsley

leehorsley@...

[Guest guest]

Hi Jane,

I am sorry you are having such trouble with the gtube. It is an adjustment going to it but I can honestly say, once things have settled, its much easier.

In regards to the vomiting, can you try slowing the feeds down? I know when Miranda is sick, or gaggy we must slow the rate for her to tolerate. Also if it is a problem of big concern, and medication does not work, her dr's may consider the Nissen Fundoplication surgery. But as you said that reflux is not there I doubt this is an option. You might also want to try raising the head of her bed at night. Also maybe the formula you are using is not right for her. We went through several till we found what worked best for Miranda. She is now on Peptemen Jr.

Why do they say she MUST eat? I thought that was the whole idea of the gtube. My daughter is 4 1/2 and has eaten next to nothing orally for the past 3 1/2 years and has depended on her gtube for nutrition.

As of now, since Miranda's stoma ( gtube site) has been established we don't use a dressing on it. But when it was new and weepy, we used to put a split 2X2 gauze pad around it and change that a few timesa day to keep it clean and dry.

I wish you much luck with all this. I can honestly say, it does get better with the tube once everything has healed and established a routine.

Problems with g-tube

Hi to all from LuxemburgWe have been now 4 weeks with Isabelle in hospital toget her g-tube.4 days after having the g-tube she has had problemswith kidneys and got a high (kalium)at 7,8.The problem is now in order with Fludrocortisone.The second week she had small seizures and herepileptic treatement had to be adjusted.Now we are at home since nearly two weeks.We slowlybegin to accustom to the tube feeding.Finaly she does't eat anything beside and even drinksonly small draughts.Her Topamax has been raised to 25mg twice a day (before once a day).Because her appetithas decreased even before ,I think that will notarrange things.The biggest problem we have still now ,is her littlevomiting nearly every day.Because her epileptic seigzures nearly allways areaccompanied with vomiting ,so we thaught that it wasstill in relation with this .Now yesterday ,theexamination for eventuel reflux from stomach tooesophage showed 1.that there is no reflux,but2.thatthe spit she is swallowing is resting in the gulletand is not passing easily in the stomach.Now we aretrying with a med for vomting (motilium)which shall dowork better the muscules from oesophage and stomach. For the moment I feel very tired with all this .It hasbeen much more problems with the g-tube then I hadimagined.We always go to Brussels in Belgium to a Doc who hasmore experience with Mito then the Docs here inLuxemburg.But I am disappointed about the course ofthe hole Treatment.We were just told that it would bejust a small operation and everything would be muchmore easyer after and probably Isabelle would getbetter after.Until now I can not say that I have hadone day on which I would have said that I am glad tohave it done,contrary ,I'm not.Has anyone of you a good idea or suggestion what wecould do to stop this vomiting.We were also told by several Docs that she must eat alittle bit every day and also drink more.What are youdoing ? Are you giving some thing to eat ? and do youinsist?Isabelle has no appetit and realy wantsnothing.What are you using for the dressing around the g-tube?There is mucous membrane around which is bleedingeasily when there is friction.I was told that it was aGranulom and I have now a stick to (burn) this out.Has anyone had this problem too ?Just need support from poeple dealing with the sameproblems.For the moment its very difficult to deal with thedoctors cause most of them are on vacation .=====M-Jane (mome to Nathalie *1990,Isabelle *1991 {MELAS}and Yves *1996 {nephrotic syndrom})__________________________________________________________________

[Guest guest]

Granulation tissue is common and yes, you use little sticks that burns the skin off. It is called silver nitrate. Our son got a gtube in April and we are so thankful for it yet it can be a bit of work too. I am so sorry your experience in getting it was so difficult. I hope things get easier now.

Alison

Problems with g-tube

Hi to all from LuxemburgWe have been now 4 weeks with Isabelle in hospital toget her g-tube.4 days after having the g-tube she has had problemswith kidneys and got a high (kalium)at 7,8.The problem is now in order with Fludrocortisone.The second week she had small seizures and herepileptic treatement had to be adjusted.Now we are at home since nearly two weeks.We slowlybegin to accustom to the tube feeding.Finaly she does't eat anything beside and even drinksonly small draughts.Her Topamax has been raised to 25mg twice a day (before once a day).Because her appetithas decreased even before ,I think that will notarrange things.The biggest problem we have still now ,is her littlevomiting nearly every day.Because her epileptic seigzures nearly allways areaccompanied with vomiting ,so we thaught that it wasstill in relation with this .Now yesterday ,theexamination for eventuel reflux from stomach tooesophage showed 1.that there is no reflux,but2.thatthe spit she is swallowing is resting in the gulletand is not passing easily in the stomach.Now we aretrying with a med for vomting (motilium)which shall dowork better the muscules from oesophage and stomach. For the moment I feel very tired with all this .It hasbeen much more problems with the g-tube then I hadimagined.We always go to Brussels in Belgium to a Doc who hasmore experience with Mito then the Docs here inLuxemburg.But I am disappointed about the course ofthe hole Treatment.We were just told that it would bejust a small operation and everything would be muchmore easyer after and probably Isabelle would getbetter after.Until now I can not say that I have hadone day on which I would have said that I am glad tohave it done,contrary ,I'm not.Has anyone of you a good idea or suggestion what wecould do to stop this vomiting.We were also told by several Docs that she must eat alittle bit every day and also drink more.What are youdoing ? Are you giving some thing to eat ? and do youinsist?Isabelle has no appetit and realy wantsnothing.What are you using for the dressing around the g-tube?There is mucous membrane around which is bleedingeasily when there is friction.I was told that it was aGranulom and I have now a stick to (burn) this out.Has anyone had this problem too ?Just need support from poeple dealing with the sameproblems.For the moment its very difficult to deal with thedoctors cause most of them are on vacation .=====M-Jane (mome to Nathalie *1990,Isabelle *1991 {MELAS}and Yves *1996 {nephrotic syndrom})__________________________________________________________________

[Guest guest]

Hi M-Jane,

I hope things are improving for you. When our little boy had a

gastrostomy we were told to clean around the tube every day with

distilled water using sterile gauze, to turn the tube throught 360

degrees each day and to repostion the sticky tape that we used to

tape the tube to his stomach. In the early days we were given a

small tube of cream that we had to aply every day too, I'm sorry I

can't remember the name of it, but it was really some sort of eye

cream, however the nurse recommended it for gastrostmy sites. This

cream was to stop the scim building up around the site. We did not

have any problems, however maybe we were just lucky. The hospital we

attended had a " peg nurse " whose job was just to sort out gastrostomy

problems, this was in England, however it's a relatively common

operation and so hopefully there are such specialist nurses near you

that you could perhaps call upon if things do not improve.

You said that you travelled to Brussells for treatment. I was told

by a specialist here in the UK that he felt like some of the best

mito specialists are to be found in France. This may not be of

interest to you and I can't give you more detail than that, however

it's something you might like to investigate if you feel you're not

getting the help you need.

I didn't bother arranging to travel to France as I felt that our

little boy had had enough of doctors for the time being, and I felt

that there were no miracle cures on offer. If our little boy had

lived longer (he died aged 21 months) then I might have re-considered.

I hope that this is of some use to you.

Regards,

Trudy

[Guest guest]

I forgot to add a bit about vomiting...

We found that the dietiticians etc. set unrelistic targets of the

volument of feed that Isaac could tolerate. We had a slow drip feed

during the night and this was the feed that he tolerated best (set to

30-50 ml per hour). We experimented giving feeds at different rates

until we felt we were giving him as much as he could tolerate. We

had a " kangaroo " feeding maching that we used to use at night and

give gravitly feeds during the day, however we started using the

machine all the time as he seemed to tolerate those feeds better.

At the end of the day you just have to do what you think is best for

your child and through trial and error try and do what you can to

reduce vomiting. We did not stop the vomiting, however by feeding

too much or too quickly we could make it worse. It was suggested

that we did very slow feeds during the day too, however I did not

feel that it was in his best interests to be wired up to a feeding

machine for 8 hours per day, there was more to his life than that.

Good Luck!

Trudy