Help!-Feeding clinic at Children's

[Anonymous]

did you ask your pediatrician's office to help you get an appt. in the feeding clinic?

[Anonymous]

Hi OP, your child sounds much like my DS, who is now almost 9. He had severe reflux from birth until 12 months of age and needed an NG tube until 12 months. At that point, the reflux resolved, which is when he really turned the corner with feeding on his own. We were about to make the appointment for G-tube placement, but he started to eat and maintain his growth at about the 10th percentile in weight. We used our local infants and toddlers, and also had DS in the KKI Feeding Clinic since infancy. Between the ages of 1 and 2, he saw the treatment team, including the pediatric GI specialist, a behavioral psychologist, OT, and speech pathologist. There were some oral motor issues which included some oral motor weakness for which he received therapy and some very mild sensory issues. We were please with the KKI experience. I don't have any experience with Children's to compare. We considered their day program at that time, but DS seemed to be making progress without it.

He is still at about the 10th percentile in both height and weight and eats a variety of foods and textures. Similar to another parent who posted, I still feed him and worry that if I don't he won't get enough calories, but he also asks for food, eats lunch and snack on his own at school, and gives me grocery lists. All things considered, he's doing great and has not needed any feeding or GI services since age 2. I hope this helps so that you see that with these supports, great strides can be made as the kids get older! Good luck with getting into the clinic.

[Anonymous]

I know this is coming a bit late as I am just seeing these threads (new to the g-tube world myself and feeding issues), but we have been working with a GI doc at Georgetown Univeristy Hospital who has been excellent in figuring out the best course of action for our daughter. She is extremely responsive - calls back the same day you call and getting appointments is not hard (also has an office in Chevy Chase if that is more convenient). If you need info and still haven't been able to get into Children's then let me know and I'm happy to give you contacts.

[Anonymous]

OP here-

Yes, by all means send me the info on your doc at Georgetown. Actually, it sounds a lot like our doc at Georgetown. I wonder if we see the same person.

So my little guy took a turn for the worse and was showing some clinical signs of serious malnutrition. We decided to have a G-tube placed, and now 8 weeks out, I think it was the right decision. I think it now gives us time to rethink his therapy and try to find something more effective than what we've been doing. I think one of the things we're dealing with is a motor planning issue when it comes to chewing, and it is something that hasn't really been addressed. I'm hoping going down this road will yield some results.

[Anonymous]

OP = hi. I don't have any answers for you other than these issues are usually not one answer. For us, the issues are a complex knot - usually some combination of lack of a mature chew, sensory issues, and behavioral issues. So, in rethinking your therapies you might have to do several different approaches to finally figure things out. I do think that attacking the general sensory issues helps. The way I think about it is if your child is uncomfortable for much of the day because of unaddressed sensory issues - why in the world would they want to try new food? Obviously with malnutrition issues, you have to tackle basic weight gain first. But try and take a whole child approach.

We have done children's, OT for general sensory issues and now SOS for feeding. Each therapy helped in its own way. We are at a point that our child has a mature chew, enjoys meals, and tries new foods with the SOS therapist but translation to home is difficult. We might wind up at KK to crack the last issues regarding learned habits but I want to give the SOS approach more time to gel first.

[Anonymous]

Anonymous wrote:OP = hi. I don't have any answers for you other than these issues are usually not one answer. For us, the issues are a complex knot - usually some combination of lack of a mature chew, sensory issues, and behavioral issues. So, in rethinking your therapies you might have to do several different approaches to finally figure things out. I do think that attacking the general sensory issues helps. The way I think about it is if your child is uncomfortable for much of the day because of unaddressed sensory issues - why in the world would they want to try new food? Obviously with malnutrition issues, you have to tackle basic weight gain first. But try and take a whole child approach.

We have done children's, OT for general sensory issues and now SOS for feeding. Each therapy helped in its own way. We are at a point that our child has a mature chew, enjoys meals, and tries new foods with the SOS therapist but translation to home is difficult. We might wind up at KK to crack the last issues regarding learned habits but I want to give the SOS approach more time to gel first.

Can you please explain SOS? My child has feeding issues too so I'd like to learn about it.

I appreciate it.

[Anonymous]

Sequential Oral Sensory (SOS) approach to feeding begins with a child simply being able to tolerate food in their presence, and continues on to touching, interacting, tasting, and eventually eating different foods. basically each week they make some food and he tries it and other tastes. This approach follows food chaining (e.g., taking an accepted food and changing it) but they also simply try different food and really work on food education (colors, textures, smells, discussing similarities and differences....)

I see this as part of the answer for us - simply from the fact that our child tries so many foods he has never tasted before with the therapist. Whether this will translate into full acquisition outside the therapy environment is an open question. But at a core level - I figure the more times he successfully tries something and he likes it (even in tiny doses) the better. Successfully tasting new things is good. We might have to try other strategies down the line, but for now I feel like we are making progress.

It helps that my child has caught up in his oral motor (and never had any language issues). So, the therapist really just has to focus on food.

[Anonymous]

Can you please recommend your SOS therapist?

[Anonymous]

Hi, I am new to this board. My five year old son has struggled with feeding issues since 6 months. Initially he was thought to suffer from failure to thrive. Initial evaluation at a local children's hospital around the age of 1.4 months suggested sensory issues. Basically he would gag or vomit excessively when eating. He has since received speech therapy and OT (on his second course of treatment). OT has addressed his sensory issues for gagging and vomitting. Howevr, he continues to experience bahavioral issues. Refusing to eat on his own. If given the choice he would not eat, only drink milk. His current weight is 37 lbs. We are now in the process of obtaining an appointment the functional feeding program at Children's. Very concerned about what to expect.

[Anonymous]

Really recommend KKI and their team there.