Feeding Tube Advice

January 3, 2012

Hello Everyone,

My name is and have been receiving e-mails from the group for a few months

now but haven't posted anything yet. Being part of this group has been great,

some really good information and ideas.

My son will be 2 years old on January 11th. His main diagnosis is Velo

Cardio Facial Syndrome (aka Di Syndrome or 22q11.2 deletion),

microcephaly, and PMG. He has many developmental delays. One being is his

feeding and his small size. He has always been in the zero percentile of height

and weight. He has been working with OT, Speech, and PT since about 5 months

old and we have not seen much improvement in his feeding. He currently still

takes a bottle and does Pediasure 1.5 cal mixed with 1 cal but doesn't take

anywhere near his goal. As for puree foods we are lucky to get 1 tbs/per meal.

Our next step for him is a feeding tube. This has been a huge decision for my

husband and I and we were just wondering what others, with experience with this,

could tell us. We are looking for any kind of advice, suggestions, or

questions/concerns we should ask our GI doctor. Any regrets with a feeding

tube? Or anything you wish would/could be different?

Thank you so much for any reply's and know they are greatly needed! We often

feel alone with dealing with our son and just want to get input of others who go

through this daily struggle of just wanting to do the best for our special

little ones!

Thank you, Luke and Katterhagen

January 3, 2012

Hi ,

My son just turned 2 and was put on a feeding tube about 2 months ago. He

was eating very little and was falling off the charts. We waited it out and

tried as hard as could to avoid the G-tube but in the end he really needed

it. Some days he ate well and when would get a cold or other illness it

would really affect his eating and take him a long time to get back to

himself and it would affect his development.

I dont have any regrets that we did it. He is at a much more ideal weight

and has more energy, can do more now than he could do before. However, I

have to say that he was a much happier child before. He did not have reflux

before and vomits all the time now. We have an excellent GI doctor who has

been in very close contact with us but something is still not right. We

have made a lot of adjustments to feedings (different feeding schedule, new

formula, less formula) and he is doing better but I was under the

impression that it would be amazing for him but it has caused him a lot of

discomfort.

I would still have gone ahead with the surgery had I known what we were in

for, because he was just not eating enough, but I wish I was more well

informed about what to expect. It is possible that my situation is unique

and in a few months he will be doing much better but for now this is not

what i was expecting.

Good luck with your decision and I would recommend that you have a GI

doctor who is available to you to deal with any issues that may come up.

That has made the biggest difference for us.

Esther

>

> Hi ,

>

> My son has Di syndrome too! He is 6 years old and your story sounds

> like a repeat of ours.

>

> It would be easier for me to talk by phone. It's a lot to type. LOL.

>

> To: polymicrogyria

> From: kkatterhagen80@...

> Date: Tue, 3 Jan 2012 10:31:37 -0800

> Subject: Feeding Tube Advice

>

> Hello Everyone,

>

> My name is and have been receiving e-mails from the group for a few

> months now but haven't posted anything yet. Being part of this group has

> been great, some really good information and ideas.

>

> My son will be 2 years old on January 11th. His main diagnosis

> is Velo Cardio Facial Syndrome (aka Di Syndrome or 22q11.2 deletion),

> microcephaly, and PMG. He has many developmental delays. One being is his

> feeding and his small size. He has always been in the zero percentile of

> height and weight. He has been working with OT, Speech, and PT since about

> 5 months old and we have not seen much improvement in his feeding. He

> currently still takes a bottle and does Pediasure 1.5 cal mixed with 1 cal

> but doesn't take anywhere near his goal. As for puree foods we are lucky

> to get 1 tbs/per meal.

>

> Our next step for him is a feeding tube. This has been a huge decision

> for my husband and I and we were just wondering what others, with

> experience with this, could tell us. We are looking for any kind of

> advice, suggestions, or questions/concerns we should ask our GI doctor.

> Any regrets with a feeding tube? Or anything you wish would/could be

> different?

>

> Thank you so much for any reply's and know they are greatly needed! We

> often feel alone with dealing with our son and just want to get input of

> others who go through this daily struggle of just wanting to do the best

> for our special little ones!

>

> Thank you, Luke and Katterhagen

>

January 4, 2012

My son also got very bad reflux for the first 3 months and was put on

medication. The first medication was prevacaid and actually made things worse.

We ended up with pepcid and it worked better and now changed to Prilocec otc

(spl?) I'm just giving the name brand of the drugs. Even though his reflux got

worse with the tube everything else is so much better. Good luck!

To: polymicrogyria

From: estherhutman@...

Date: Tue, 3 Jan 2012 20:15:50 -0500

Subject: Re: Feeding Tube Advice