Re: feeding tube

[Guest guest]

I would say g tube absolutely...its much better and less invasive...  imagine

having to deal with a tube down your nose.   got his g tube at age 2 (he

is now 11) and we have never had any complications...on the contrary...it

improved his life significantly.

 

Good luck....   Hasselberger

Subject: feeding tube

To: polymicrogyria

Date: Tuesday, November 25, 2008, 11:38 PM

All of Alia's Dr.'s nueroglogists and therapist have recently decided

that she needs help with her food and calories intake. the decision we

are making right now is wether we wwant the g tube or the one that

goes through her nose. Im thinking the g tube because im afraid of her

pulling it out. Her dr thinks the one that goes through her nose

because of less risk. So i was just wanting to know other opinions and

experience. so any feed back would be helpful thank you.

[Guest guest]

A g- tube, definately. We took 6 months to decide and have it done, but it

was by far the best thing we ever did for Finlay. He has had his tube for 5

years now and we never really had any trouble. He had a PEG tube to start

with and after 18 months this was changed to a mic-key button.

I know it is an operation, and there are always certain risks involved, but

it is a relatively standard procedure and complications are very rare. It

also is better to have it done when they are little.

Annelies & Finlay (BFPP, 7)

feeding tube

All of Alia's Dr.'s nueroglogists and therapist have recently decided

that she needs help with her food and calories intake. the decision we

are making right now is wether we wwant the g tube or the one that

goes through her nose. Im thinking the g tube because im afraid of her

pulling it out. Her dr thinks the one that goes through her nose

because of less risk. So i was just wanting to know other opinions and

experience. so any feed back would be helpful thank you.

[Guest guest]

Hasselberger,

     The Dr.'s told me that we might see improvement after she got the feeding

tube. What improvements has  experienced? I guess I have been putting this

off for a year now because i keep thinking it means the dr.s are giving up, but

they say ill see improvements.

From: alianette16 <alianette16@ yahoo.com>

Subject: feeding tube

To: polymicrogyria@ yahoogroups. com

Date: Tuesday, November 25, 2008, 11:38 PM

All of Alia's Dr.'s nueroglogists and therapist have recently decided

that she needs help with her food and calories intake. the decision we

are making right now is wether we wwant the g tube or the one that

goes through her nose. Im thinking the g tube because im afraid of her

pulling it out. Her dr thinks the one that goes through her nose

because of less risk. So i was just wanting to know other opinions and

experience. so any feed back would be helpful thank you.

[Guest guest]

Hi ,  The improvements we saw were things like... he had more energy, he

was more alert, he began gaining weight, and became overall...healthier.    

Once you get the g tube, and adjust to it... it truly is a positive

improvement...  they wouldnt be recommending it if they didnt feel she needs the

extra help.   THE DOCTORS ARE NOT GIVING UP...they know what they are doing. 

With more energy and more growth and weight gain, she will do better at therapy,

and will feel better.   They know what they are doing...it is a common solution

to help a child with feeding difficulties.       We never hesitated..  because

we didnt want to jeopardize his health..  just prior to getting his g tube he

had so many illnessesses...and always had to go in for IV fluids because he

would refuse to swallow etc. 

 

They told me that he would do better in school and in his overall responsiveness

to everything...and they were right.  ALSO you are now able to really monitor

the additional caloric intake.  

 

I do not have anything negative to say about the g tube with .  We never

had any complications, it has never bothered him...  I learned how to change the

Mic-Key button...and seriously... I have no negatives.  He needed it.   It helps

him..  we did it.  He got better.   never enjoyed eating pureed

foods....he started choking alot, and gagging, and would cry and cough and a 45

minute feeding would end up in disaster.  I was relieved to have the

tube...because I now knew that he was getting what he needed.  AND the kid was

happier.  It was hard to accept a happier child being fed by a tube...but he was

happier....and less congested...and like I said...much better.

 

Now... unfortuneately...  as they predicted with ( has other

problems)...he can not be fed orally at all (he aspirates and has reflux..and

needed fundoplication surgery).     But generally he is the healthiest child out

of my three! He still needs to gain weight...and suffers from reflux etc.  but

being on this liquid nutrition... its pretty amazing..he has great skin, great

everything..and he never seems to catch a cold.    I always joke that perhaps

its because he is not getting the chemicals of our world that are in our

food!!!  lol.

 

Regardless...  a g tube is helpful...it will give you more control and more

peace of mind....  and you will find many similar stories. The doctors are not

giving up....they are trying to help her.

 

Please be assured.... it is going to bring positive improvements to her life.  

From: alianette16 <alianette16@ yahoo.com>

Subject: feeding tube

To: polymicrogyria@ yahoogroups. com

Date: Tuesday, November 25, 2008, 11:38 PM

All of Alia's Dr.'s nueroglogists and therapist have recently decided

that she needs help with her food and calories intake. the decision we

are making right now is wether we wwant the g tube or the one that

goes through her nose. Im thinking the g tube because im afraid of her

pulling it out. Her dr thinks the one that goes through her nose

because of less risk. So i was just wanting to know other opinions and

experience. so any feed back would be helpful thank you.

[Guest guest]

Definatly the G-tube. Our Madison had the NG-tube while she was waiting

for her G-tube to be put in and it was very dificult. We were taking

her back to the hospital at least every other night to have it put back

in. It would get pulled out or get clogged. They clog a lot easier than

a G-tube does. You can change them both at home (if you get the Mic-Key)

but the NG-tube is very difficult to change if your child is moving or

crying. Hope this helps and good luck.

and Madison

>

> All of Alia's Dr.'s nueroglogists and therapist have recently decided

> that she needs help with her food and calories intake. the decision

we

> are making right now is wether we wwant the g tube or the one that

> goes through her nose. Im thinking the g tube because im afraid of

her

> pulling it out. Her dr thinks the one that goes through her nose

> because of less risk. So i was just wanting to know other opinions

and

> experience. so any feed back would be helpful thank you.

>

[Guest guest]

My 1 yr old son Lucas just had a Nissen fundoplication and g-tube

surgery. Like you, we were very hestitant on getting a feeding

tube. The g-tube has been the biggest relief for Lucas and us as

well. Lucas for months was struggling to gain weight. He would gain

4 ounces in a week and then lose it just as fast or faster. He was

choking and we were afraid that he would aspirate reflux. He

actually finally made the decision for us when he stopped taking his

bottle. We had to take him into the hospital for an ng tube until

they could schedule the procedure.

I would definitely recommend the g-tube. From what our doctors told

us is that the ng tube can be a little more tricky and there is the

chance it can be pulled out or pulled into the wrong place. The g-

tube for us has been very simple. We have the low profile mic-key

button and it has been so simple to care for. It is so simple we can

change the button ourselves.

Since the procedure Lucas is completely a different little boy. He

is happy almost all the time and is gaining weight. He also seems

more alert and interactive with us. He is stronger and is doing much

better in his therapy as well. We can control his caloric intake and

we also don't have to stress out like we did before if he missed a

feeding. We have no regrets about the surgery.

Alissa - Mom to Lucas 1 yr BFPP and Noah 3 years

>

> All of Alia's Dr.'s nueroglogists and therapist have recently

decided

> that she needs help with her food and calories intake. the decision

we

> are making right now is wether we wwant the g tube or the one that

> goes through her nose. Im thinking the g tube because im afraid of

her

> pulling it out. Her dr thinks the one that goes through her nose

> because of less risk. So i was just wanting to know other opinions

and

> experience. so any feed back would be helpful thank you.

>

[Guest guest]

Hi,

My sons Dr really wanted us to have the GN-Tube but i thought it would

be pulled out by him so after a bit of head banging between the Dr and

I - I won..

has had his G-Tube for 3 years now and after the first op to

insert it I was really upset..wondering if I had done the right thing -

he was in more pain than i expected -

But all in all " it was the best thing i ever did for him " !!

So my advice to you would be..stock up on calpol and don't plan on

going anywhere for a few days. it is definatly worth it in the end.

and just so you know Morga's Tube snaped earlier this year and the put

a NG-Tube down 3 times in 12 hrs....cus he kept pulling it out - so i

was right!

Hope this helps, i know how difficult this decision is.

mum to 8yrs PMG/Liss, G-Tube severe Epilepsy.