Our 10-year-old son was recently diagnosed with an eating disorder and failure to thrive. The doctor is recommending two weeks of hospitalization on a feeding tube.
This sounds very traumatic for a child to me. We'll obviously do it to get him healthy, but I would love to hear from any parents who've been through this and how their child did. Our son already has diagnosed anxiety (among other mental health issues), so I want to be prepared for what's ahead.
ETA: Yes, an NG tube. We've asked his therapists at Kaiser for help with the eating disorder for a while and the "fight the food monster in your head" strategy has failed. His pediatrician just said, "Well, he's consistent in not gaining weight." We ended up going outside of Kaiser to a pediatric eating disorder clinic in another state for advice. When we asked Kaiser to reimburse that, they suddenly have eating disorder specialists who can help. We meet with one tomorrow and will be very forceful in getting him the care he needs. They need to fix what they've done wrong for years in treating him.
I can't help with the eating disorder/anxiety issue or a child with a feeding tube.
Just wanted to say I've know people (1 family member) who have had feeding tubes at home/for short term use.
They'll train you how to load it and clean it in case he needs to keep it in for a time at home. You'll get it!
All the best.
Call the OLEY Foundation. They are a group that deals with children and adults who are on IV feelings and some that are fed thru a feeding tube. They are wonderful and a very very helpful, friendly group. I was on IV feelings for 21 years. Now that I am older and my metabolism has come to a halt just about (thank you menopause) I can get in enough to sustain me. I also have a G tube which could be used for feeding it need be. I use it to vent my bloated gut. They are the group you want to speak to.
They are located in Albany. Just google them.
I see you're in CA, you might contact this group, they are a good resource for families who have children with medical issues.
Family Voices of California
1663 Mission Street, 7th Floor
San Francisco, CA 94103
###-###-####
____@____.com
http://familyvoicesofca.org
Hi new name-
I am assuming, that with a 2 week hospitalization, they are talking about an "NG" tube? That is a 'naso-gastric' tube that is typically temporary...and is inserted through a nostril...and threaded down to the stomach.
An NG tube is tolerable for some...but depends on a persons 'gag' response. I know that *I* would not tolerate that very well.
If they are planning a tube for longer term use...there a 2 types I am aware of. One is a 'g' tube. Goes directly into the stomach, and once healed...very easy to manage. The volume of formula you can get in is greater...as opposed to a 'j' tube. A 'j' tube goes directly into the jejunum...below the stomach. Because of this...the volume/rate of formula has to be slower...meaning that a person is 'tied' to a pump for greater amount of time.
Please private me if I can help further. ALL of these tubes are manageable!!
I wish you and your son the best!
There was a girl in one of my college classes that had a feeding tube. She had the "food" cartridge/bag/container in a backpack that she carried all the time. She didn't even notice it was there.
I feel bad for your little guy. I'd plan on a hospital that deals with pediatric mental health issues. Sounds like your little guy is in for a long road in this area. Poor kiddo.
There are different types, of feeding tubes.
And long term versus short term/temporary.
Did the Doctor explain it all to you?
You should ask any questions you have, to the Doctor, or specialist that is treating your son.
My late Dad had a feeding tube once.
Nose.
Temporary.
It was fine.
The feeding tube will not cure him. It is being done to help because he is already in the failure to thrive, levels. And if it is very extreme, the organs can also fail etc.
Hopefully he is also, being assigned a Therapist/Psychiatrist too, in addition to his hospitalization.
I went through something similar when I was 13 (it was incredibly traumatizing for my parents). I was anorexic, with a history of anxiety and depression (my son now has the latter two, it seems to run in my family). My parents ended up having me hospitalized at Kaiser, although they managed to avoid the feeding tubes. The hospital used isolation from my family and the "earning" back of privileges as a means to get me to start eating. They were able to get me out of danger in about 2 weeks, although it was a slow, uphill climb to get healthy (several years). I did find that getting out of my household, away from my parents (not because I didn't love them but because they were a crutch) and thereby breaking my habits helped. My parents remain really angry at Kaiser, although I am here and healthy so it did seem to help. However, my biggest piece of advice would be to trust your instincts and to explore options both in and outside Kaiser, even if it's just one or two external consultations, so you understand all your options and the full variety that are out there. There is a model program in Canada that may be good to look into. Ultimately, it may be a feeding tube is necessary, but if not, it would obviously be better to have the eating become voluntary.
