Help!-Feeding clinic at Children's

[Anonymous]

My 19 month old has had feeding issues since birth, ng tube at 4 months (out at 6 months), has been getting services through MoCo early intervention for feeding issues since 6 mos.....and things are only getting worse. He's literally starving himself. Part of the problem is mechanical with chewing, but now it's mostly a behavioral issue that is not getting addressed. We're staring at the prospect of a feeding tube if we can't turn things around FAST. He's still on pureed food and is more and more refusing to be fed, and will not feed himself either. He'll nibble on a french fry, eat a few grains of rice, 2 peas, and that's it. He's tiny and hasn't really grown in 9 months. He's now off the charts for weight, and has fallen from 60% to 10% in height. I spend all day trying to feed this child, and still I'm only able to get him to take about half of the calories he needs for the day, and that's on a good day.

Can anyone share their experience with Children's feeding clinic? Who is the person to contact? (I find that scheduling anything at children's is a huge run-around so if there's a direct # for the clinic, I'd love that). How intensive is their program? How long is the wait to get in?

Mostly, I'd love to hear some success stories, as I'm feeling pretty hopeless now.

[Anonymous]

Hi, we've never participated in this type of a study, but I've heard others refer to it before as a "swallow study". I searched the Children's website and found reference to:

• Modified barium swallow consults
• Oral motor/feeding disorder consultation and treatment

under Hearing and Speech - Appointments and consults: 202-476-5600.

Good luck OP! It sounds like a real struggle, and my thoughts are with you.

[Anonymous]

Here is how it works: I don't rememeber the number, call the main number and ask for the Feeding clinic. Before you are seen in the feeding clinic, you have to go thru gastroenterology to make sure there is not a physical problem. Then after that appt, you get an appt with the interdisciplinary feeding clinic. As I remember it was Thursday at lunch. You have to fill out some nutrition questionnaires before you get there, (3 day food diary). It took about a month for us to get in about 2.5 years ago. It helped to have our doctor's office make the appt with the GI (we took a cancelled appointment to get in sooner). Take whatever your pediatricians' office can help you get it. Our son was in such bad condition that we got a appt in 2 weeks (way out in Annapolist for GI) but then they called for same day appointment with GI in Spring Valley and we took it. The GI was able to make a preliminary diagnosis.

Here is a group, you can post on that forum and tell it your problems, started by a woman in Southern MD.

http://health.groups.yahoo.com/group/InfantileAnorexiaForum-OneBiteAtATime/

We see Dr. Chatoor at Children's, we have been going since my child was 14 months.

We recently saw the GI at Children's and it took 2 months to get an appointment, so you really need your peditrician to help you get a sooner appt. Do the nurses at your child's pediatrician do that sort of thing, it made a huge difference for the timeline for us. Otherwise it would have been an extra 2 months before seeing the GI. They want to make sure there is no reflux or other GI problem before talking about behavioral problems.

The interdisciplinary feeding team had Dr. Chatoor, a Speech pathologist, nutricianist and a couple of other people.
We just saw Dr. Chatoor yesterday. She works W, Th, F

[Anonymous]

OP, I went through a very similar experience as you. My son had a combination of issues - lack of oral motor development so he physically couldn't manage food, anorexia and sensory issues. I didn't go through Children's feeding clinic, but did have my son evaluated by an OT at Children's who works with kids with feeding disorders. She recommended speech therapy with a therapist who specializes in feeding issues and that's the route we took. Our therapist was with The Language Experience in Rockville (Shady Grove Road). What we did to preserve our limited insurance dollars was to go every other week. The first part of the session, the therapist would work with my son. The remainder of the session was to train me.

I never did have success with MoCo in getting services through infants and toddlers. They sent a psychologist out and she didn't seem to have any clue as to how to help and didn't provide any recommendations.

Over the years, my son has made great progress in that he can now physically eat, though eating meat and foods that are harder to chew makes him tired. Also some foods still make him gag. He will do more textures. But, I've given up (for the moment anyway) on caring whether he ever eats a vegetable or piece of fruit in his life.

For most of his life, I've physically fed him (he's almost 9 and has no physical reason that he can't feed himself, he just doesn't eat if I don't feed him). But, for some reason that I can't explain, for the last few weeks he's started asking for food, taking bites on his own, and sometimes even feeding himself his entire meal. And, last night he added some items to the grocery list.

We never did have to have a feeding tube, though honestly, there have been times where I had feeding tube envy because I wanted a break from worrying and constantly working on eating. I do have a friend whose child did have to have one placed and, from what I can tell, it hasn't been a bad experience for her. They used Kennedy Krieger feeding clinic and I don't think they had a long wait.

As far as weight, with the exception of one year where I was able to keep him at the third percentile, he has spent his entire life below that. He's also small for his age - under the third percentile.

Good luck. I hope you find services that work for you.

[Anonymous]

Oops pp here, success story, yes huge huge success story with my son. He has gone from height scale 50-75 % and Weight -1% to height 50-70% weight 10% huge huge difference. We even got sent to the Metabolic clinic because my child was failing to thrive. He kept failing the organic urine acid test which says he is starving (could be metabolic, could be actual starving). Once I found out what the smell of starving was (the smell of acetone on his breath), I realized later that I had been smelling him starving for many months. I have not smelled my child (almost 4) starving for months, usually when he is sick. Most people cannot smell the ketones on his breath, I asked some doctors, but they couldn't smell it, when I could, only one friend could smell it, so it is not something you can really expect to smell. I put 2 and 2 together on the smell on his breath when the metabolic doctor was testing ketones in the urine. No smell for the week of the test, but then the smell came back and I had extra ketone stix and realized the smell and the ketones in the urine were the same.

[Anonymous]

You may also want to check out HSC Pediatric Center in DC http://www.hscpediatriccenter.org/node/4 or Kennedy Kreiger in Baltimore. HSC Pediatric is smaller than CNMC and a bit easier to navigate.

[Anonymous]

OP –
Because you are in a critical spot, as prior posters suggest please use your pediatrician to advocate with either children’s or kennedy kreieger for an immediate evaluation – and take whatever you get first. Because your child is so young, if you get appropriate intervention now, you have a maximum chance of addressing the behavioral issue (and also finding out if there is some undiagnosed physical issue).

Hi. Here is a post with a series of responses on sensory food aversion -
http://www.dcurbanmom.com/jforum/posts/list/98518.page#800237

Here is another one on getting a child to eat who has sensory processing disorder. http://www.dcurbanmom.com/jforum/posts/list/151372.page#1366446

Good luck and let us know what happens. You are not alone.

PS - we always thought our issues were purely behavioral after we got over the basic oral motor problems. But in trying to think about the whole child we got a basic top to bottom OT evaluation. guess what - we had weak hand strength and other sensory issues. So, while we do lots of things directly on feeding per se (family meals, feeding therapy, lots of cooking together, lots of peer modeling) addressing other issues also helps. For some reason, working on tactile issues over all has seemed to make my child slightly more open to trying new textures/tastes/smells. Progress is measured in milimeters.

[Anonymous]

Does your 19 month old have hypotonia? Was the ng due to aspiration issues or lack of ability to sustain suck, or other issue?

I can't provide info on the specialist in this area but I can relate a little about our failure to thrive experience and our years of feeding and speech therapy. We went through a feeding clinic at Children's in Boston as well as seeing a feeding specialist for months (an oral-motor OT) who specialized in sensory stuff. Some of the therapist were somewhat helpful, but I don't think they were really critical to my son coming off the g-tube. Feeding is such an individual experience and from all that I have learned there is no predicting when a child with feeding difficulties will start doing it on their own.

It is helpful to get the oral motor exercises for them for sure --using the chewy tubes, z-vibrator to increase sensation in the mouth, tart and sweet tastes in mouth to awaken the nerve endings. One of the best exercises for strengthening that I have heard about is putting puffs or cheerios on the lips and making the child get it with their own tongue. That is so hard to do with children with weak oral musculature. Does your child have any speech delays?

We had an NG tube until 4 months and then got a G-Tube that stayed in until 2. I think most parents are freaked out by the idea of a g-tube and I certainly can understand that. After having been though this, I don't regret getting it for a second. It gave me peace of mind to know that what calories my son could not consume during the day we would get in to him at night. Some days he would not need the g-tube, some days he would.

We taught him how to feed during this time....it just took that long for him to do it on his own. He can eat any texture now and is totally self- sufficient. It was definitely all consuming while we were in the midst of it and I feel for you as I know how completely stressful it is.

I personally would consult asap with a GI specialist asap and a pediatric nutritionist if you haven't already. We got good instructions from our nutritionist on adding high fat oils (corn oil) to various foods (applesauce especially) that my son would eat and he was on pediasure as well to ensure he had adequate nutrition for brain growth and development during this whole process. Even though he had the G-tube for back-up, we tried to not have to use it.

Have allergies been ruled out? The GI may be able to address that if it is a concern.



Good luck

[Anonymous]

OP, we are going to KKI in late April and only called about a week ago. They actually had an appointment for the week after we called but it wouldn't have been enough time for us to prepare for the evaluation. I have a 2 year old who is still drinking a lot of formula and although seems interested in some of the social aspects of meals doesn't really eat enough to thrive w/o formula. It breaks my heart, I have no idea what's going on and when I see other toddlers rip into foods and eat whole fruits I just ache to see my daughter enjoy the same things. I know I should "cheer the child I have" and when she eats my heart melts....but those moments of chewing are far and few between. Good luck and know you are not alone.

[Anonymous]

OP here- Thank so much to everyone who replied. I'll be calling Children's to set up an appointment tomorrow.

To answer some questions- My ds has been under the care of a gi since he was 10 days old (severe reflux), has been on reflux meds since then. He's also had 2 endoscopies- one at 4mos to rule out anything structural, and one about a month ago to look for signs of EE or other allergic inflamation. Both were totally normal.

We've been working with Early intervention since he was 6 months old (OT who handles feeding issues). For the last 4 months we've also been seeing a private feeding therapist (ST specializing in feeding) and neither has mentioned hypotonia issues. In fact, for the first 6 months of his life, he had mild hypertonia (in his body, so not sure if it relates to oral/ facial) . He had no mechanical problems nursing, just started refusing one day. Same with bottles.

Even after a year of chewy tubes, vibrators, etc DS still does not have a rotary chew. He nibbles at food with his front teeth then swishes it around until it dissolves. (the 6 cheerios or few grains of rice or a potato chip that he does eat) He does have some sensory mild sensory issues that we've made lots of progress with.

I'm really hoping Children's will allow me to make an appointment with their feeding team without seeing one of their GI's. We have been seeing our GI since our first child was born (also severe reflux) and really trust her. Plus, we had a very bad experience with Children's GI's (DR. Kerzner sp?) when we took ds for a 'second opinion' to him a year ago when we were working to get him off the ng tube.

It's comforting to know that I'm not the only one going through this with their child. It's such a helpless position to be in. As a parent, I really feel like I'm failing my ds, even though rationally I know I'm doing absolutely everything I can. It doesn't help having friends with 7month olds the size of my ds munching on chunks of food that I can only dream of my kid eating.

Again, thanks for all the input.

[Anonymous]

I highly recommend KKI. You can get an eval pretty quick but the wait to get into the program can be 10 months or more. Your child needs to grow and develop. Has anyone suggested a G tube?

[Anonymous]

OP here-

A g-tube has been suggested as a last resort, but neither the gi nor my pediatrician think we're there yet.

We've been dissuaded from going to KKI for feeding by a number of people, including an extended family member who's child was in their feeding program a few years ago, and also ds's feeding therapist because of their approach, which I'm told involves force feeding. I'm waiting to hear back from Children's, and we're looking into the inpatient feeding program at UVA.

I hope we can get some help, because a g-tube is clearly on the horizon. I am actually not totally opposed to the g-tube if that is what will get ds healthy, but what worries me is the weeks/months of ng tube that the doc requires prior to placing the g-tube. I think there is no chance in he** the ds will actually keep it in.

[Anonymous]

Sorry to hear you have been dissuaded from KKI. It is an excellent program. The OT and ST sessions alone helped my child develop essential skills needed to chew food. It is a behavioral based program so behavioral psych does the feeds and decisions are made off of the data they collect. Many programs do not collect appropriate data. It is an intensive program, 8 weeks in length. If nothing else I would suggest you get an evaluation there because they are one of the top 5 programs in the country. Another option is Hershey. A good friend took her son there, they only work with 1 child at a time. They saw great success. Not all feeding clinics are created equally. You have to be careful. Also be cautious of peditricans because most have zero experience with this. I know a 7 year old child who was living on strawberry milk his entire life and the pediatrician thought that was OK since he weighed enough! Ridiculous!

[Anonymous]

PP here with child at Children's feeding clinic.

http://www.amazon.com/Diagnosis-Treatment-Disorders-Toddlers-Children/dp/193401933X/ref=sr_1_1?ie=UTF8&qid=1302479549&sr=8-1

Maybe you need to buy this. This is by Dr.Chatoor and it is very helpful in explaining different kinds of feeding issues. If all you have done is leave a message at Children's Hospital, call again and talk to someone. Make sure they are getting you an appointment. ASAP.

[Anonymous]

OP here- Thanks everyone for the input.

I have now talked with 3 people at Children's and each time have been told that someone will call me to schedule an appointment within 24 hours. I'm not holding my breath. I think I'll have to go down there in person this week to make the appointment. And thanks for the rec. of Dr. Chatoor's book. I ordered it tonight.