[adoptionblessin]

I have a 19 mth old that we are going to an intensive feeding therapy with . I was wondering if anyone had experience with this and what were your experiences like. I am nervous they said it would be an 8 week program. We have to travel 800 miles for it .

[leastofthese]

No experience with that, but am interested to know what it is for and what it is. Is this a child you have adopted or are fostering?

Do you have to stay there for the whole 8 weeks?

I'd love to hear more...

[adoptionblessin]

Hi This is for a child I adopted , she has been gtube fed most of her life and has went to feeding therapy for most of it yet will not eat orally. They say this is a last ditch effort . they have high success rate. Yes we will be there for 8 weeks as an inpatient very long but worth it if she will eat by mouth

[leastofthese]

That's interesting. I've made an inquiry regarding a nearly 3 year old child who has also been g-tube fed all along. The child is just beginning to eat a few bites of baby food, but isn't thrilled about that, even. I wonder if this would be something that would benefit this child as well.

If we are selected as the family who gets to adopt, I will most definitely be pming you to get more details. It sounds intensive, but you're right, it'll be worth it if your child is able to PO feed! Keep me posted on how it goes, how long till you leave for the treatments? Will you stay at a nearby hotel, or do you have to stay in the hospital? I'm guessing if your child's an inpatient, you'll be in the hospital, huh?

[adoptionblessin]

I would be staying at the hospital and they have a ronald mcdonald house. We are looking at January for Eval and May for inpatient . Ther is a waiting list. If you are chosen I will answer your questions . Do you know if she has been in a feeding therapy program so far? It will take alot of work after 3 yrs on tube do you know much on her medical history ?

[Cobb]

Hi, our almost two year old is a member of the feeding tube club. She had a medical condition that prevented her from eating orally, but also developed an extreme oral aversion. When we met her at close to 13 mons. old, she would scream if we would try to touch her lips. We began working with her at that time and have slowly made progress. Less than a year later, she is eating small amounts four times a day and has a ten hour tube free window (she had continuous feeds to begin with). It's taken alot of work and she'll still barely drink and can't chew, but we're very hopeful.

I have a couple of questions for you if you don't mind. Does your dd have digestive problems that require continuous feeds or do you feed her "meals" several times/day? Did she have a medical condition that prevented eating orally or was the tube a result of failure to latch on, swallow, etc? Has she passed a swallowing test?

I'd be more than happy to talk about this stuff with you if you'd like. I know how frustrating it can be to get good information on feeding tube dependency and therapies. I know quite a few kiddos who have been feeding tube dependent for four to five years and eventually did learn to eat, so I really wish you luck!

[adoptionblessin]

Well she has been on tube for 15 mths , she has had two swallow studys the first at 3 mths was abnormal. It used to take me 2 hrs to feed her 6oz. She has multiple medical issues but her latest swallow study has showed much improvement so she should be able to eat but now has a majior aversion we have been in fedding therapy forever. In the begining she was continious drip now we are 6 x day although at times we have to go back to pump. She has multiple diag. including CP , HYPOXIA , SEIZURES , BPD , ASTHMA , REFLUX , ? DUMPING SYNDROME , EXPRESSIVE AND RECEPTIVE LANGUAGE IMPAIRMENT , AND A FEW MORE.

hAVE YOU BEEN TO AN INTENSIVE PROGRAM ???

[Cobb]

WOW! So do you go back to the continuous feeds when she's dumping? That she is able to meet her nutritional and hydration needs, atleast at times, with six feeds a day sounds like great progress.

We haven't been to an intensive program. Our girl had Necrotizing Endocolotis shortly after birth, so she never actually went on a bottle. Once her intestines healed after her initial round of surgeries, they tried, but she wasn't able or wasn't willing to swallow. We weren't in her life back then, so are information is a bit fuzzy. She continued having issues with bowel perforations and had several more resections, so ultimately she became dependent on TPN (intravenous nutrition) and that destroyed her liver. We're almost one year post transplant now. At 18 months she went off the TPN and has been exclusively tube fed since. Up until about a month and a half ago, she was continuous.

In addition to the transplant issues, she has short bowel syndrome (approx. 20% of her short intestine remains and she has intermittant problems with dumping as a result - that's gotten much better since we've been able to give her solids), reflux, BPD, pretty extreme allergies (but she's been off of breathing treatments since 18 mons of age), expressive language impairment (very common for a tube fed child since the muscles in their mouths don't develop through eating - we've been fortunate in that her receptive language seems on target), plus a few more.

When we started feeding therapy with her at 14 months, she was seen at Monroe Meyers. It's a development institute attached to the University of Nebraska Medical Center where she had her liver transplant. She did pass a swallow study at that time, but still gags unless the food we give her is really thin. Things have been slow going and yet rapid... all things considered. We were told not to expect her to be willing to eat before her second birthday and that she would probably require continuous feeds atleast at night for several more years, even after she does start to eat. If we can make some progress with drinking, her team is considering working toward getting rid of the tube all together! Our next appt. is in January. She wants to drink, but doesn't know how to suck... just recently we've gotten her to close her mouth on a sippy cup, so like I said, we're hopeful.

I imagine that your dd's issues with receptive language make things difficult. One of the things that really helped in our fd's progress was that she began having a strong desire to imitate. Right now, we spend upwards of four hours a day working on eating and activities to aid feeding. In addition, at this point, most of her play centers on eating activities... she loves to cook and feed her baby! One of our big successes was when she allowed us to brush her teeth with a dry toothbrush around a month ago!

While I hope that an intensive program won't be a necessity for us (unless she complete stalls out on her progress), I am interested in what it entails. I'd like to hear what they do that makes such a drastic difference! It's frustrating that feeding tube dependency isn't all that uncommon and yet there isn't alot of information to guide us. Even our occupational therapist told us that there's not alot out there that she can refer us to.

Regardless, it's always nice to talk with others who have been there, done that.