Introduction

Hi all,

I've been gaining some good info on this board and figured I should introduce myself so I'm a bit more comfortable asking questions.

My DD is 8 months old and was diagnosed at 3months with Niemann-Pick Disease, Type A (an extremely rare neurodegenerative disease with a prognosis of 15-30 months).

Currently Quinn receives PT and Feeding Therapy 2x a week each. This past Wednesday, she had surgery for g-tube placement and a Nissen fundoplication.

I realize that Q's dx is a bit different (lol - understatement of the year - there are 4 current cases in the US!) but there are some things we're dealing with, like EI and the feeding tube, that I know you all are dealing with as well so I hope it's ok if I pop on and ask some questions

Re: Introduction

Hi-
My DS has a Gtube and receives feeding therapy as well. Feel free to send me FM with any questions or to chat.

Re: Introduction

Hi and Welcome,

I don't have much experience with the tubes (just in NICU), but, I have plenty of experience with EI (both of my children recieved services, they're in school FT now).