RE: Feeding Tube Advice

[Guest guest]

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