We've had a busy few weeks lately. I came across a link on one of the feeding groups I'm in to how tube weaning is done in Germany and Austria. there is a clinic in Germany run by a Dr. Markus Wilken where they do a two week intensive wean program, kickstarted by over the course of a week cutting out all caloric intake and thereby making the cild hungry. Zoe has never been hungry in here entire life, she has no idea what hunger is and therfore no incentive to eat. There was also a link to a blog of a mom in Seattle who did a home weanign program with Markus and within 2 weeks, her 15 month old son went from 100% tube fed to 100% orally fed with the exception of a few ounces of fluids at night. AMAZING!!! Markus actually came over from Germany and spent his vaction with this family and a few other kids working on tube weaning. A big part of his practice is what he calls play picnics, where a few tube fed children sit around and play with all sorts of textures and tastes of food with no pressure to eat at all. Food is just there to play with and if it gets eaten even better, but there is absolutley no "spoon to mouth" action. He also did a lecture at Seattle Children's which jason and I watched one night, which is incredible. i immediatley called Zoe's OT at Children's and set up an appointment to go in a talk to her about doing some sort of home based rapid wean program. We go in tomorrow. I also got in touch with the mom whose child just weaned and we had a play picnin last Friday with her son and a few other tube fed children. ZOe had a great time. Zoe got the OK from her cardiologist, pediactrician, her SLP,and her OT to try something like this, so hopefully tomorrow we can set up a plan and give this a go. She also starts a once a week feeding group today that I think will be really helpfult o her. I have also been talking to some Bainbridge moms about setting up a time once a week or so where some toddlers with feeding issues can get together an have play picnics.
The following is the link to MArkus' lecture at Seattle Children's. (heads up: it's 2 hours)
mms://seattlechildrens.wm.internapcdn.net/seattlechildrens_vitalstream_com/Rehab_5-27-10.wmv
The following is another Seattle Mom's interpretation of her impressions on how tube weaning is done is Austria and Germany and a few websites that have more good info. It is all copied directly from her blog.
I spent the first two weeks of May in Europe (by myself!! thanks to my parents' flier miles and total support). In addition to hanging out with my best friend, I visited Markus Wilken's hospital-based clinic in Darmstadt for two days, and then spent 2.5 hours with Professor MDS in Graz. Both places do rapid weans, in which tube-fed calories are reduced over the course of a week down to 50% intake (and plan is adjusted further based on what happens). Their success rate (for increasing oral intake and for weaning kdis) is very high. And they have published research.
A crucial thing to keep in mind is that the healthcare system there is fundamentally different from the one in the US, although it did take work for the government insurance to be fine with paying for intensive treatments.
Darmstadt
Their approach/philosophy:
1. Perform diagnostics to see if a wean is possible (typically this is 5 days inpatient). If yes, work with the family to assess the psych profile and limits of where they are; families usually return for a 2- to 4-week inpatient wean.
2. Choose techniques from their vast toolbox that are appropriate for the given child and family.
3. Work as a team (2 psychologists, a GI, 2 SLPs, and social work) that meets daily/constantly.
4. Goal is to teach the family how to feed their kid/how to be with their child around food. This might mean a total wean, or it might mean tube feeding management – whatever is possible for *that* child to do.
5. Weight gain over time IS important; weaning at all costs is not the goal.
6. You don’t see a feeding disorder until tube feeding is stopped: tube feeding, by keeping the child full and not needing food, covers up the issue. (I had to let that one roll around my head for a bit… but it makes perfect sense!)
7. A family with a tube-fed child has been through medical trauma of one kind or another – acknowledge and treat.
8. Hunger = stress. Decide how far to go with letting child be hungry, so that stress does not overwhelm progress.
9. There must be a team approach so that everyone is aware of and treating (if necessary) medical, psychological, and functional (oral-motor) issues at the same time. (For example: you can’t do feeding therapy if the child has untreated reflux and screams in pain at food.)
My observations:
1. Markus does his therapy/evaluations by getting down on the floor and truly playing with the child. This is not “faking it” play, but a true fun time (although he is taking detailed mental notes the whole time). He also engages the parents (usually mother) and gives guidance on how to relax around the whole eating situation.
2. Approach is completely, completely individualized to the child and the parents. From the therapy sessions I was privileged to observe, no two were the same.
Graz
Here I was lucky to spend time chatting with MDS in a café. Here are some quotes from Professor Dunitz-Scheer, as they best illustrate her fierce (!!!) commitment to children and their dignity. It’s a much more dogmatic, to me, approach than what Germany does, but it has worked for many hundreds of kids:
1. Overuse of tubes is medical child abuse, plain and simple. (Try an NG on yourself – the irritation/pain never goes away.)
2. The earlier a wean can happen, the better for the child. [no age limits!]
3. Nothing is done by force. Nothing.
4. Watch the feeding *before* you do any further testing. Nothing happens without detailed observation first.
5. 90% of kids who vomit are overfed by volume by at least 30% [!!! Holy crap!!!]. It is amazing how little kids actually need.
6. 50% of swallow studies done overseas can be thrown out, since they are performed by radiologists who don’t know how to work with kids. We do our own.
7. Germany, Austria and Switzerland recognize tube dependency. Mitch Katz, MD, is an adopter of the Graz method. He is at the Children’s Hospital of Orange County. http://www.choc.org/chocdocs/profile.cfm?pid=59
8. Oral intake does not happen in a predictable curve up once you stop/reduce tube weaning. [In other words, it’s not 100% tube, 0% oral, then 50% tube and 50% oral, then 25% tube 75% oral until 100% oral, but there is a long period where the child takes in just a little bit… until the true hunger kicks in and the oral levels SHOOT up. Expecting oral intake to immediately match what has been taken away from the tube intake is completely unrealistic).
And from both Germany and Graz...
-- Watch, Wait, and Wonder [Wonderful!].
-- Use of the Play Picnic/Baby Picnic, where kids get to interact with food in a fun setting with NO goal that they eat. It is just playing with food (if they try something, great, but there is no clapping or encouraging or coaxing. Parents chat and play, kids play, food gets thrown, etc.).
-- No age requirement!
Here are some key differences between those approaches and ours:
1. Again, with a few possible exceptions, the programs in the US are *behavioral* based, and as such they have age requirements that the child be at least 18 or 24 months old.
2. No one (we know of) in the US espouses principles of “self-regulation” (where the child decides what, when, where, and how much they eat).
3. The US does not have programs where kids get to interact with each other.
4. No one in the US has weaned hundreds of kids and has published research about it (check for both Graz and Germany)
5. This is an obvious one: how many hospitals do a 5-day diagnostic work-up? And what insurance would cover it? Sigh.
6. The one-hour-a-week (“spoon in the face” as my friend calls it) therapy does nothing for most kids, and sets some back.
7. No recognition of trauma as a symptom for kids and parents.
8. No use of force or coercion, EVER (as opposed to Kennedy Krieger).
9. In general, people in the US are completely freaked out by the idea of significant calorie reduction. Also, the focus here is on the magical numbers of mL a child is reqired to be getting. In Europe during a wean, attention is paid more to a child's output, demeanor, and other signs. The kids are very closely monitored (daily pediatrician evaluations) but there is not this clinging to a "must have" number of ounces.
This is not quite as organized as I’d hoped, but maybe it can be a starting point. looking back on Markus' lecture in Seattle, and just from reading people's stories, I did not struggle with oral aversion as so many of you do. What amazed me was the deep understanding that Markus has of the issues of aversion and fear and other "bizarre eating behavior" -- he comes to them by looking at things through that child's eyes, and bases his treatment on that.
Other online places:
www.notube.at: the Graz program
www.ippec.org: Markus Wilken and Martina Jotzo’s page
www.thecrunchyandthesmooth.com : blog of a 13 month-old who was treated at home by Markus (and who is now *eating*!!! Yay Heath!). Includes links to research and resources.
www.franklyfrankie.com: amazing story of a family who did an intense wean on their own, at home, with love and courage. This was a two-year-old who had never eaten/drunk a thing before.
www.lifeandtimesofstella.com : blog of a mom who weaned her daughter via the Graz online “netcoaching” method at 4 months old. Links to additional resources.
And on a completely different note. We went to Spokane this weekend to visit some friends of ours that also have a CDH baby, Maddie. It was our longest road trip yet, but Zoe did great. Maddie is 7 months old and has overcome the most incredible difficulties, but she is the most mellow happy child. her smile is amazing! It was great to catch up with everyone and just let the kids play together for a while. We are heading to Portland next weekend for a NICU reunion and to catch up with some of Zoe's nurses.
Chasity, maddie, Zoe and I
At Molbak' snursery with Margi(Mimi) a few weeks ago.
Jason, Zoe, Ashley and Ethan on Tee lake at my parent's cabin a few weeks ago
Eating pancakes at the cabin
Making forts with cousin Ethan at he cabin.