Re: feeding tubes - our story (long)

[Guest guest]

I think the choice you made for Hannah was great. I think I would of done the

same thing if I were in your place. My situation was different. Jordan was born

not knowing how to suck or swallow. He also had no gag reflux so he couldn't

protect his airway. At a month old when he had surgery for GE Reflux which they

did a nissen fundalplication, they placed his g-tube at the same time. What

worries me now is that I have read that children with brain disorders and have

g-tubes, their lifespan is not as long as a child that has a brain disorder and

eats by mouth. I don't know if this is true. I am going to ask his GI doctor

tomorrow. It is kind of scary to find out. Jordan is completely dependent of the

g-tube and we are teaching him to eat by mouth. I hope that one day Jordan will

be off the g-tube especially if what I read was true. I don't want to scare or

worry anyone, all I want to know if anyone has heard about this too please let

me know or ask your doctors.

Annette mother to Jordan

" GAVAN J. CANAVAN " wrote: Hello Everyone

I havent been very active here for quite a while, but I do read everything. I've

just not got the time to reply most days.

I cant recall all the recent discussion on tube feeds, but wanted to add my

thoughts to the thread. Each of us here have our own unique set of circumstances

with our child's diagnosis, the related illnesses and ability/disability,

therapies, schools/intervention programs, appointments, family issues, work, etc

etc, and the reasons for choosing tube feeds are many and varied. I am writing

this for those who are perhaps in the minority, like me, who actively pursued a

feeding tube for their child. It seems to me that most people try desperately to

avoid having a tube placed (dont get me wrong, I perfectly understand this, and

it does make sense), and that very few of us actually initiate the process.

Getting a feeding tube for Hannah was THE best choice we have ever made for her,

and for the rest of the family. Here's why.

Let me say that I'd never heard of feeding tubes, when at 9 months of age Hannah

lost the ability to suck. I noticed this when she was no longer able to take a

bottle of expressed breast milk, and so tried harder to maintain breast feeds.

She would attach herself okay and appeared to take enough (ie - I felt emptied,

and did not have engorgement), but over the next three months she did not gain

weight. Eventually she was hospitalised for dehydration, and we struggled once

we were home again to get enough fluid, and food and meds, into her. By the time

she was a year old, most of the PMG related issues were becoming obvious (CP,

seizures, major delays in all areas, feeding.....) but we struggled on, knowing

as you all do, that there is nothing much to be done to change things, that you

just have to do your best. With still no weight gain, and with many hours trying

to force fluids and food, let alone the two hours per day it took to do her

meds, I was slowly going around the twist, and spending very little time with my

family, including our then 6yo and 8yo children. I found a parent support group

and started attending monthly meetings. At one of the first few meeting I went

to, there was a mother with what I soon discovered was a feeding tube for her

child, and I recall how I stared in amazement as she kindly described what she

was doing, and why, and allowed me to observe closely. Within moments I realized

that this was the answer to so many of the issues we were facing as a result of

Hannah's problems. I went to see the pediatrician and asked if we could get one

for Hannah, he phoned the gastro doctor, who we saw 3 weeks later and the tube

was placed three weeks later again. It could be said that the doctors were too

keen to operate, but the gastro doctor is reknowned for not putting tubes in

unless there is a very good reason. I turned up at his appointment hoping that

he would agree to my request, and before I had reached reason number three (on

my list of four major and numerous other related reasons) he was saying " that's

enough, she needs one. "

The benefits for Hannah were that she would no longer have to struggle to

swallow enough food and fluid to survive. She would not longer have to endure so

many gagging and coughing episodes which might lead to aspiration and related

troubles. She could now gain weight appropriately to maintain health, and take

enough fluid to keep from dehydrating. She did not have to endure the endless

hours of misery that force feeding caused. She would benefit from the ENTIRE

dose of each medication being given, with out spitting/dribbling some of it out.

For us the benefits were also vaired. The worry of the above reasons was

completely removed. Also, taking many hours per day to feed and medicate Hannah

had been impacting severely on our family, and the time we gained was so

precious. I was finally, after 15 months of difficulty, able to spend unhurried

time with my two youngsters, who were by this time showing signs of my not

" being there " for them. We have never regretted our choice, as we have seen

Hannah's general health and growth improve to " normal " , and all her meds end up

where they should, in her tummy, not down the front of her or across the room.

Now that she is on the ketogenic diet for seizure control, it has proven

invaluable, as she can enjoy better seizure control without having to radically

change foods or feeding behaviour. Without the tube I dont believe she would

have eaten enough to maintain ths wonderfully effective diet. Another good point

is that we are no longer reliant on Hannah's routine to do feeds. She can be fed

and/or medicated as required at any time of day whether asleep or awake. Ahhhh,

flexibilty!

Like any other major changes in life, there are some not so good thigns about

tube feeding, but we learned to adapt. Granulation tissue was a problem, but I

have learned to recognise and treat the early signs so it is NEVER an issue now.

Tube feeds initially supplemented oral feeds, but eventually oral feeds were

supplementing tube feeds, and now Hannah is totally tube fed. I am not in any

way suggesting that this is a negative, but I am aware that most people (us

included, initially) want to maintain oral skills for as long as possible, but

often push for this at the expense of other aspects of life. We took a good long

look at the big picture, and knowing that Hannah was a severely delayed child

with little hope of gaining useful life skills, we determined that we could do

more for her by tube feeding her, and using the time more productively for her

in areas where she would benefit so much more. Hannah enjoys sensory activites

and we include oral stimulation in her daily routine. She always managed food

poorly in her mouth, so missing such trouble was no big deal, however, she still

enjoys the feel of other things in her mouth, such as fingers, toothbrush, soft

toys, gum massages. In the end, we feel that what we have gained for Hannah, by

tube feeding, is far more than we would have gained for her had we pursued oral

feeds. In retrospect, a feeding tube was probably inevitable, and the

circumstances of our getting one were unusual in that we sought it before the

doctors offered one. It will always puzzle me why the pediatrician, who is a

wonderful doctor for whom I have much admiration and with whom I work well, did

not see it coming. His patient was such an obvious candidate for tube feeding it

wasnt funny, and yet we were in a desperate situation and he didnt seem to

recognise that. I have put that behind me now and moved on to a more settled

phase of life with our tube fed Hannah.

Kim , I must say that your comment about the school system being so beneficial

is precisely what I feel too. Hannah receives so much therapy and stimulation at

school that the pressure is effectively taken off us at home to spend hours

doing the same, whether out of necessity or guilt. When asking her OT what I

could be doing over the summer break, she told me to take her home and ENJOY

her. There is nothing we can do over the holidays that will make a positive long

term difference to Hannah, so I am doing just that, enjoying her. She is a

delight, and very, very settled in recent weeks. Without the gastrostomy tube I

doubt that we'd be enjoying this settled phase.

Hoping that I have not rambled on nor repeated myself too much here. Just felt

the need to share the details of our story re tube feeds, as it is just one of

many scenarios which could be presented by this group. I also hope that the way

I have expressed myself has not offended anyone in any way at all, as I am

certainly not speaking against anything that others have shared. Often my

feeling are so strong that I write as I speak, forgetting that words on a page

do not necessarily convey the true meaning as conveyed in a conversation.

Regards to all, and Happy New Year to each of you and your families.

(Hannah's mum, Australia)

[Guest guest]

Annette,

Amber is going to be 12 in January. She had a Nisson and G tube placed

shortly after birth for he same reasons. She was fully eating and

drinking by mouth until Semtember when the teacher at school decided to

force her to dring an entire 8 ounce can of pediasure from a regular

glass instead of her soft tipped sippy cup, on top of her meal She came

home and that night when I sat down with her meal she just began to cry

and shake her head side to side no, no. It had taken me 6 months to get

her fully eating and drinking and was undone in two weeks at school. We

were even scheduled to get her tube out. She had NEVER had anything by

mouth until I got her at age ten. Not even a pacifier.

She is finally beginning to eat again but not drink.

I remimber asking her GI doctor that same question about life span and

he said that is not true. In fact in most cases the nutrician is much

better than that of an average child. There are a lot of adults that

have ben tube fed for various reasons since child hood. I know of one

family that two of the children and the mother all are tubed due to a

genetic condition. I found this out through the Oley Foundation.

Virginia mum to alicia and Amber