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Old 06-13-2012, 12:25 PM   #11
Alida
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Re: Help - child will not eat!

we are in WV about 20 min south of morgantown

thanks so much ladies!!

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Old 06-15-2012, 02:50 PM   #12
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Re: Help - child will not eat!

I took this from this thread...http://parent-2-parent.com/forums/sh...sorders-Clinic


The Big 6 programs are the following:

1) Kennedy Krieger Institute - Baltimore, MD - they have 5-6 PhD behavior analysts there
2) The Marcus Autism Center - Atlanta, GA - run by David Jaquess
3) The Hershey Medical Center - Hershey, PA - run by Keith Williams
4) The University of Iowa Hospitals and Clinics - Iowa City, IA - run by Linda Cooper-Brown
5) The Munroe-Meyer Institute - Omaha, NE - run by Cathleen Piazza
6) St. Joseph's Hospital - Patterson, NJ - run by Peggy Eicher

Each of the 6 programs tout success rates of 86-94% and regularly publish and share their results. These programs take a primarily behavior analysis approach to feeding but each has a different slant approach that could accompany the behavioral analytic approach. Basically, these programs collect data on how meals are going measuring concrete behaviors like number of bites accepted, refusal behaviors, problem behaviors during meals, tube dependence and weight, amongst other behaviors. These programs usually depict individual results in graphs as opposed to providing general impressions on how "progress" is occurring or not. Usually these programs have an array of options with their capstone program being an intensive program whereby, meals are conducted daily over several weeks ranging from 8 days to 8 weeks.

There are of course offshoots of these programs from people who trained in these programs and started their own clinics as well. Two very good examples are:

Clinic 4 Kidz run by Meeta Patel in California
SPARC run by Jen Dawson in West Chester, PA

I'd agree with MOMB in that I would ask programs to show you their results before you invest your time and resources into a program. My standard operating procedure when I did my own clinic was to have prospective family's talk with the last 3 families I worked with detailing the good the bad and the ugly of the programming. The biggest criticism of these programs is that long term results are harder to discern given that they draw from around the country. However the results that they do have for long term follow-up are excellent, but as I mentioned it would be hard for a family to travel to say Baltimore from Cleveland for a 60 minute follow-up 1 year later when things are going so well.

There are people here that can speak to specific of programs that had gone to, but understand that if asked every program will say they are "behavioral" or use a multitude of approaches, but a "behavior analytic" approach is what you are looking for. So, I would ask specifically for who the behavior analyst is on the team you are working with and ask for some of their publications in feeding. Almost anyone working in this area will have some publications of their work with children showing specific successes. We generally all attend the ABAI conference held over Memorial Day weekend, and share our results. So, you can take a look at their website for the upcoming conference (or past one's) to see if they are doing work in this area.

While other approaches exist and may be good, there is a general lack of peer reviewed research showing that those approaches work. Behavior analysts are driven by data making that more amenable for dissemination, however similar tools can be used by parents considering these other types of programs. The more other programs work the more options that would be available to parents, so I would suggest that parents consider asking for data and publications on these other approaches to spur those approaches' research efforts. Personally, I'd prefer to see what the research says on an approach versus testimonial evidence, but feeding issues can make parents desperate, so I understand why this occurs. Success rates are not 100% for behavioral approaches either, but most failures are due to complex or chronic re-ocurring medical problems in my experience.

Anyway, families considering feeding programs are fortunate if any of these programs in driving distance. However, they also have waiting lists and families that are distant from these programs are better served by going to programs locally (regardless of the approach used), and considering going to these programs after lack of success at the local programs. Generally speaking, I would recommend spending a finite period of time with a local program if "measurable progress" is not being made. That is, I'd say somewhere between 3 - 6 months and no progress is being shown then I would consider going to one of the big 6 programs or its off-shoots. More specifically, I would recommend that parents collect data on the following measures to ascertain if progress was occurring:

1) Bites accepted - generally success is in the 30-40 bites per meal range
2) Calories consumed orally - generally 100% of their oral needs need to be met (125% if the child is underweight or in the FTT range)
3) Supplemental dependence (if this is an issue) - children with FTT generally require some sort of supplementation to meet their needs, if this is typically reduced or eliminated then progress or success has occurred.
4) Refusal behaviors - generally meals are full of these behaviors when parents try hard to do meals, in some cases these behaviors rarely occur because parents have backed off on presenting food items to their children because of severe behaviors during meals. Generally speaking reducing these behaviors by 80% during initial meals or under 15% of bite presentations is generally considered to be successful (that equates to about 3-5 refusals per meal in a typical 40 bite presentation meal.
5) Problem behaviors - while crying, wining and tantrums (or aggression and disruption) are not the main reasons for feeding clinics, most parents would not call an admission successful if all of the above was successful, but this behavior was at 75-100% of the meal. Therefore, successful programming should have this behavior in check as well, that is an 80% reduction from baseline meals or 15% or less of the bite presentations (again that is around 3-5 bite presentations with problem behavior).

Again, not that other programs need to achieve these in a short time, but these are the measures of success, for me anyway, as to whether any program is working or making progress in the area of feeding. Ultimately, you want your child eating the food, refusing less, having little to no problem behaviors during meals, getting their calories from their diet and gaining weight. Slightly different goals are used for children who are "selective eaters" (e.g., they rarely need supplemental feedings and get 100% or more of their calories from their diet; its just not a healthy diet) but the approach is not very different. Still, parents can collect these data themselves even on 1-2 of the measures with any program sought. If progress towards these goals is not occurring either ramp up the intensity to the maximum possible by the approach or stop it altogether. I would have a limit of 3-6 months maximum with any approach as that is more than enough time to ascertain if success is occurring or not. In the meantime you can schedule an appointment at one of these places because of such long wait lists and cancel the appointments if you are being successful with the local program. However, if progress isn't happening you can go to the appointment and go from there.

It is important for family's to get help in this area, particularly for the FTT children and ESPECIALLY for those resistant to supplementing the child's caloric needs. The further and further the child falls behind calorically the more of an impact it has on the child's general development. There is a critical window in the first 36 months for brain development especially and while feeding issues can be handled later, if the child is not getting their calories in at key developmental stages, we simply cannot go back to these windows. So it is crucial to be IMPATIENT with unsuccessful programs that are not making progress. More of the same doesn't help and its important to move the child on to a program that has a better chance of success.

Sorry for the rant. Haven't posted in a while!
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