When do you know when it is time for a G-Tube?

September 1, 2004

Hi!! Joey, my 5 year old son has a unspecific Mito. We have had a

terrible time since he has started Kindergarden, in getting him to

eat. Breakfast, lunch, Supper or just snack, it doesn't matter. He

gets his meds every morning and every night in food such as pudding,

yogart or apple sauce. For a long time even before school ever

started we had a hard time getting him to eat Supper, so we would

just feed him. He would say his batteries have run down. Now it is

every meal, every day. I have to make sure his med are mixed up in

just one bite of food, other wise he will not get all of it. I

looked at his left overs from lunch today. He only ate two bites of

his sandwich and that is it. And his teacher said he could not get

up from the table until he did that.

With my older son went through a very picky stage, our Peds. doctor

told me he would be fine, he will not starve himself. I'm afraid he

may say that about Joey. I think with Mito, that will be the wrong

answer. Any help would be GREAT!!!

Tamara

September 1, 2004

A g tube is a big step for a child who does not want to eat. Grace does have a g tube, but we do not feed her through it. We got her tube put in because she refused to take her medications by mouth, and she started to deteriorate rather quickly from it. We now may be coming to the point that she will need a pump at night, because she is having a lot of problems maintaining. We are hoping to avoid this as long as possible, because it will decrease her daytime appetite.

We do, however, have to give Grace an appetite stimulant to get her to eat regularly. We use Periactin for this, it is also used for her migraines and to help her sleep. If we do not give her the Periactin, she would not eat well at all. Also Grace cannot eat the typical three meals a day. I have to feed her on her own schedule, which is at least every hour or two. We learned that with her that we just have to keep offering the food, and if she wants it she will eat it. We still do offer her the meals with the family, regardless of when she has eaten last. Most of the time her dinner never gets eaten, but it is offered. Also most of her meals consist of cheese and hot-dogs. We do really try to give her a high complex carb diet, but sometimes it is better for her just to eat whatever she wants.

I would look at Joey's whole picture before resorting to a g tube. Is he gaining weight? How is his blood work coming back? Is he thriving? Do you think it is a behavior problem? We needed hard evidence that Grace was deteriorating before we resorted to the tube. It has never been regretted though.

Best wishes.

September 1, 2004

> Tamara,

Does he have a favorite food ot two? I would let him eat what he

wants as long as he is eating. If he wants pizza for breakfast,

cereal for dinner. Any snacks that he really likes? How about two to

three snacks for lunch instead of a big meal? Is he having an energy

problem or is it the food not making him feel well or is it

behavior. has gtube which we love. I still make her eat every

meal every day. It is too easy to let her just be fed-she would love

not to have to work. I want her to be as normal as she can as long

as she can. It is good to have as a back up and for meds. If he

doesn't eat will he drink? How about pediasure? My youngest went

through a huge picky phase last yr. and she loved the pediasure-

almost too much!

Dawn

September 1, 2004

Tamara,

Where is Joey on the charts? How is his weight for his height? I would look at

those and see how his weight trends have been over time. Also, have you

worked with a feeding therapist (not a nutritionist)? I would work with one

before getting a tube. Feeding therapists can be great at getting more food

into kiddos. Ours got our daughter to eat.

Now, I will say that my 6 year old has a tube. She has had it for 5 years. She

is now eating food but I hesitate to take it out because who knows how long

that will last.

Have you been to a GI? I would also go to the best one you can find.

Kids with feeding problems will starve themselves to death. My daughter was

15 months and 12 pounds when she got her tube.

September 1, 2004

Unfortunately I understand this issue way too much! Asenath hasn't

wanted to eat most of her life. She got to the point that at almost three

years of age she weighed between 19-21 lbs. Finally the docs did nutrition

studies and found she was starving. I had been telling them how I had to

squirt baby food into her mouth just to get her to eat. She never self fed

herself. The Ng-tube helped her greatly and within 2 months she had gained

10 lbs! After 6 weeks the G-tube was placed and made life much easier, but

she still didn't want to eat orally. Even with very high steroid use, her

appetite wasn't very good. Now that we are decreasing her med she is again

not eating. One or two bites a day on her own is not uncommon. Every once

in a while some food hits her fancy and she will eat it, but it is so

unpredictable.

In Asenath's case, fatigue, migraines, GI issues, and stroke effects

have probably caused her lack of eating. It is a very frustrating issue.

Food is such an important social thing that we as humans have a hard time

imagining ourselves not having, so when our kids don't want it, it drives us

crazy! It is harder for my to take Asenath not eating than for Zipporrah to

not eat. At least with Zipporrah there is a medical reason why it would be

DANGEROUS for her not to eat!

Sorry if I am no help here. I guess this is a sensitive issue with me

lately. If your child is not eating and you are concerned, definitely talk

to your Mito doc in particular. He/she may understand better why it is

important for a G-tube placement. Then that doc can talk to a GI doc and

recommend the G-tube. This is how both our girls got theirs. Our present

GI doc would have been no problem at all convincing the need for the

G-tubes, but some GI docs are so hard to communicate with because they have

always seen kids so much worse off that need them and so the ones who just

won't eat, can fall through the cracks.

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy,SID, dev. delays, asthma, chronic vomiting...

Zipporrah (10 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach

issues, disautonomy, hypo & hypertonicity, migraines, possible seizures,

dumping syndrome...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (7), Kezia (3), &

Marquis (2) (some with Mito symptoms)

When do you know when it is time for a G-Tube?

> Hi!! Joey, my 5 year old son has a unspecific Mito. We have had a

> terrible time since he has started Kindergarden, in getting him to

> eat. Breakfast, lunch, Supper or just snack, it doesn't matter. He

> gets his meds every morning and every night in food such as pudding,

> yogart or apple sauce. For a long time even before school ever

> started we had a hard time getting him to eat Supper, so we would

> just feed him. He would say his batteries have run down. Now it is

> every meal, every day. I have to make sure his med are mixed up in

> just one bite of food, other wise he will not get all of it. I

> looked at his left overs from lunch today. He only ate two bites of

> his sandwich and that is it. And his teacher said he could not get

> up from the table until he did that.

> With my older son went through a very picky stage, our Peds. doctor

> told me he would be fine, he will not starve himself. I'm afraid he

> may say that about Joey. I think with Mito, that will be the wrong

> answer. Any help would be GREAT!!!

> Tamara

>

> Please contact mito-owner with any problems or questions.

>

September 1, 2004

I also wanted to add that I agree with the other girls about not

rushing into a G-tube either. Depending on the cause of his not eating, his

current weight vs. what other kids his age are, how long he hasn't been

eating well, the quantity of food and liquids he is taking in per day, how

many meds he needs to take per day, and how much energy it takes to consume

food orally, is all important in determining the need for further help. If

it seems he is using more energy eating than he is consuming it may be

helpful for a tube. But if the issue is due to meds affecting the taste of

his food, you may want to try some different things first before jumping

into a G-tube. Does he keep hydrated? Is he underweight? Ask these

questions and they will help in your and the doctors' decision making.

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy,SID, dev. delays, asthma, chronic vomiting...

Zipporrah (10 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach

issues, disautonomy, hypo & hypertonicity, migraines, possible seizures,

dumping syndrome...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (7), Kezia (3), &

Marquis (2) (some with Mito symptoms)

When do you know when it is time for a G-Tube?

>

> > Hi!! Joey, my 5 year old son has a unspecific Mito. We have had a

> > terrible time since he has started Kindergarden, in getting him to

> > eat. Breakfast, lunch, Supper or just snack, it doesn't matter. He

> > gets his meds every morning and every night in food such as pudding,

> > yogart or apple sauce. For a long time even before school ever

> > started we had a hard time getting him to eat Supper, so we would

> > just feed him. He would say his batteries have run down. Now it is

> > every meal, every day. I have to make sure his med are mixed up in

> > just one bite of food, other wise he will not get all of it. I

> > looked at his left overs from lunch today. He only ate two bites of

> > his sandwich and that is it. And his teacher said he could not get

> > up from the table until he did that.

> > With my older son went through a very picky stage, our Peds. doctor

> > told me he would be fine, he will not starve himself. I'm afraid he

> > may say that about Joey. I think with Mito, that will be the wrong

> > answer. Any help would be GREAT!!!

> > Tamara

> >

> > Please contact mito-owner with any problems or

> > questions.

> >

September 2, 2004

Where do you live? I might be able to help you find a feeding therapist. We use one who lectures across the country so she might know someone where you are>

Jill Fisch

SCAD Family

Edgemont, NY

September 2, 2004

How far are you from Boston? If she knows someone in the city is it too far? She sees people here in NY--they come from all over the country to see her. She does an evaluation and gives you a home program. What she does is amazing. My daughter could not eat a morsel of food until we saw her--same with my younger son. I will call her tomorrow. She might be away, but I will definitely talk to her. You can take a look at her website. Her name is Lori Overland. The site is www.talktoolstm.com Jill

Jill Fisch

SCAD Family

Edgemont, NY

September 2, 2004

...I've been to many nutritionists and even a feeding clinic trying to find someone who can get my children, mostly the youngest who is 5, to eat...there are very few foods that she eats and I can't imagine that she is getting remotely what she needs in terms of nutrients...HOW do you find a feeding therapist or specialist? I'd love to try that ... I've been on the verge of begging the metabolic dr. for a g-tube so that I could stop worrying about the food at least...

thanks

,

Mom to , age 5, looking like mito, still undiagnosed.... over three years after first major episode...

, age 10, doesn't seem to be affected in the same way - if she is at all...it's up for debate

-----Original Message-----From: Sent: Wednesday, September 01, 2004 9:16 PMTo: Mito Subject: Re: When do you know when it is time for a G-Tube?Tamara,Where is Joey on the charts? How is his weight for his height? I would look at those and see how his weight trends have been over time. Also, have you worked with a feeding therapist (not a nutritionist)? I would work with one before getting a tube. Feeding therapists can be great at getting more food into kiddos. Ours got our daughter to eat.Now, I will say that my 6 year old has a tube. She has had it for 5 years. She is now eating food but I hesitate to take it out because who knows how long that will last.Have you been to a GI? I would also go to the best one you can find.Kids with feeding problems will starve themselves to death. My daughter was 15 months and 12 pounds when she got her tube.Please contact mito-owner with any problems or questions.

September 2, 2004

Jill,

We are in the Boston area, just west of the city... that would be great if you could help me network...

thank you!

-----Original Message-----From: jf2545@... Sent: Thursday, September 02, 2004 9:39 PMTo: Mito Subject: Re: Re: When do you know when it is time for a G-Tube?

Where do you live? I might be able to help you find a feeding therapist. We use one who lectures across the country so she might know someone where you are>

Jill Fisch

SCAD Family

Edgemont, NYPlease contact mito-owner with any problems or questions.

September 2, 2004

sorry all that I e-mailed this back to the list... I'm new and am just realizing that when you hit reply it goes to the whole group... sorry again

-----Original Message-----From: Fossett Sent: Thursday, September 02, 2004 9:40 PMTo: Mito Subject: RE: Re: When do you know when it is time for a G-Tube?

Jill,

We are in the Boston area, just west of the city... that would be great if you could help me network...

thank you!

-----Original Message-----From: jf2545@... Sent: Thursday, September 02, 2004 9:39 PMTo: Mito Subject: Re: Re: When do you know when it is time for a G-Tube?

Where do you live? I might be able to help you find a feeding therapist. We use one who lectures across the country so she might know someone where you are>

Jill Fisch

SCAD Family

Edgemont, NYPlease contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.

September 3, 2004

,

My daughter was a preemie. A tiny preemie. She weighed less than a pound

at birth. Because of this, feeding issues have always been a big deal for her.

GERD was always a problem too. We had a feeding therapist work with her

as an infant in the NICU. When she continued to have issues after the NICU,

we looked up our old feeding therapist. We saw her until last year.

Do you have a local GI? A local Easter Seals? A local NICU? A

developmental follow-up program for preemies? These would all be good

resources for feeding therapists. Our feeding therapist worked with at

least weekly for over a year. After that, she worked with her every other week

for a while. At the end, she worked with her on a consultant basis. I know

that

I could call her at any time. calls the Easter Seals building (where

saw her) " Sue's house, " because thought that our visits were friendly

visits to her very large home.

While we are not using 's tube at the present time, I hesitate to have it

removed. She is not a good eater even now. She has weighed the same (or

more) for at least two years. She has not really grown any at all in height

for

at least a year.

Have you ever been on the Our-Kids list? Someone there may be able to help

you find a good feeding therapist. Ours is a speech pathologist but some

areas use occupational therpaists as feeding therapists.

We worry more about calories than quality. I want to have at least some

fruit OR vegetable a day. I give her cheese and lactose-free whole milk. She

cannot really eat meat (can't chew it). But other than that, she eats a lot of

calories. We calorie-load. We put butter on everything. We only use whole

milk. Her school has to serve her two snacks and lunch. She takes a ton of her

milk to school.

But I do say this....if feeding your child is runninng your life then maybe it

is

time to get a tube.

September 3, 2004

Hi, Tamara. My daughter is an infant with a G-tube, so I'm not writing with

experience on your son's age group, but my initial reaction is to ask if your

son has seen a speech pathologist and/or developmental pediatrician in a

feeding clinic.

They would evaluate his feeding skills and see if there are any other reasons

why he might be eating so little (ie aversion, reflux etc.). Since he is able

to

eat by mouth, I think I'd get a referral to a feeding clinic before resorting to

a g-

tube. Granted, the g-tube can be very helpful in getting your child much

needed nutrition (which is also very necessary for energy!).... but they have

their problems, too, and you do worry about creating a dependancy on the

tube. And if you do go the G-tube route, it will be of benefit for your son to

still

see the feeding specialists because they can help make sure he continues to

develop his oral motor skills.

(mom to Daphne, 10 months old dx with infantile spasms at 3 months.

Cause still unknown... mito one of suspicions)