My 14 month old son is being admitted (in patient) to Our Children's House in Dallas for intensive feeding therapy. He still nurses and has refused all solids from the time we first introduced them at six months old. At his nine month well check his pedi gave us a referral for a speech evaluation. By the time we were able to be seen and start feeding therapy he was eleven months old. In three months he's made no progress with eating. He gags and coughs and refuses everything! He is having an endoscopy next week to rule out and medical problem that would cause him to gag or cough while eating. He has had awful reflux and us still on Prevacid. The dr said there could be damage from reflux causing pain. If everything is fine medically than we were told this is most likely sensory related. My son has only gain half a pound since March bc he is no longer getting complete nutrition from breast milk alone. The therapist at Baylor said it won't be long until he is losing weight and will likely need a feeding tube until he is thriving. Has anyone ever gone through this before? Anyone familiar with OCH Baylor? We will be admitted for five weeks and he will receive five feeding therapy sessions a day. We also have a three year old daughter do this will be very hard on our family to be apart as we get Alex the help he needs. Would love to hear of anyone else's experience with this feeding program or child who has a feeding disorder. Thank you all very much!
My former neighbor's boy had a feeding tube from there. He was treated there for his tube and is eating normally a few years later. Many wonderful people will be supportive of you. Let them help you out.:-)
I used to work in early intervention. I don't think he could be in a better place.
Good luck and God bless.
While I don't have experience with the specific intervention your son needs, I did spend 21 days inpatient with my son at OCH Dallas for intensive physical therapy following an almost three month hospital stay at Children's Medical Center Dallas for an infection that nearly took his life. Our experience there was pleasant enough but not extraordinary. There is a lot of down time where you're just hanging out so be ready to deal with lots of feelings of going stir crazy. You will have to make arrangements for your own food but they do have refrigerators and microwaves you can use....since it is a much smaller facility, it doesn't have a cafeteria like the bigger hospitals. My son and I used to take lots of walks in his stroller around the block though technically you're aren't supposed to leave the property if you are inpatient. I hope you get the results you need but prepare yourself mentally that it can be pretty depressing to be "stuck" in a place like that for so many long long days. You will truly appreciate your home when all is said and done. BTW, I live in the Orlando area now but back then I lived in north Dallas. We were there from mid Nov - late December 2008 and my son was three.
I meant to say OCH Baylor
Hi cf-
I am sending good thoughts your way...
My daughter had a feeding tube for YEARS...and it really was a blessing...
She had some other medical concerns...and as a result...some sensory issues. I looked at some feeding programs...but for HER...I just could NOT admit her (she had already spent SUCH a LONG time in hospitals...)
Anyway...for US...(and I had the safety net of the g tube at night)...I sat her at table with sibs for meals...and fixed her a plate of the 'same' food...and a sippy cup...I never made an issue really...just gave her a plate...a sippy cup...(and of course with the tube feed...tried to 'run' that with a meal so food on plate was associated with feeling full)...She played with the food...spilled the 'sippy' cup...and there was always a mess...
One day...I kid you not...the 'sippy' cup was empty...and no liquid to clean up! The little sneak had sipped it away!!
I will NOT kid you...it has taken YEARS for her to eat by mouth...and I still cut it up in SMALL bits...but she does eat now.
BUT...without the feeding tube... (and the modeling of her sibs) not sure we would be where we are now.
Private me if you want...I know this is scary...
The feeding programs I looked at in my area (east coast...Johns hopkins...children's national...hospital for sick children) were predominately 'force' feeding/strict behavior modification programs...and I was not comfortable with those for MY daughter...BUT she had serious cardiac/lung issues as well...
Again...private me if you want...
Best luck!! And good thoughts for your little one!
Michele/cat
