What I have written about Heath's wean will not apply to everyone, or even anyone, besides Heath. I know you are wise enough not to take it as medical advice or set off on a guerrilla weaning effort, although desperate moms have done so. There is a serious risk of harming or traumatizing your child, and even sabotaging their chances to wean in the future, if a hunger-based wean is mismanaged. Please think carefully about your options if there is no one in your area willing or able to support a solid rapid weaning effort. If you are determined, you can devise a good plan even if it takes effort.
Reasons not to wean:
- If your child is currently absorbed in reaching a major developmental milestone, like walking, let them reach their goal before starting a wean.
- If your child has unresolved GERD (which would bring pain with eating), it isn't time for a wean.
- Cardiorespiratory instability or dysphagia (aspiration risk) are also reasons to wait. Is a swallow study necessary to establish that your child can eat safely? Some swallow studies are unreliable, per Suzanne Evans Morris and Marsha Dunn Klein, Pre-Feeding Skills, because children are more likely to aspirate under stress, and swallow studies are no picnic. Have the best SLP you can find observe your child in action and discuss the merits of the study. (Here in Seattle, I would recommend Robin Glass at Children's Hospital.)
- If your child has disturbances in self-perception, such as autism, which may affect their ability to respond to hunger, self-regulation weaning is not recommended.
- If you as a parent are struggling with serious psychological issues such as addiction or child neglect, don't attempt a wean.
There is an interesting diversity of opinion regarding the best age for weaning. Being under 18-24 months doesn't mean your child can't wean, but is often given as an age restriction by weaning programs that incorporate behavioral techniques. That's because some of these techniques rely on the child having an idea what's going on and possessing good receptive language skills. Self-regulation principles see age as irrelevant -- a tiny baby can respond to hunger as well as a toddler. In Graz, Marguerite has found that children under 12 months are the easiest to wean. I know of at least four cases of 4-5 month olds here in Seattle who weaned beautifully. I hope there will soon be published research on this topic as it is quite a fascinating one.
Non-reflux vomiting, volume sensitivity, lack of oral experience, or food aversion are not indications that your child can't wean successfully -- Heath had all four, as do many kids who go on to become eaters!
If you think your tube-fed child might be ready to wean, what can you do?
- Call your travel agent and book a flight to the University Children's Hospital in Graz, Austria, where the tube weaning program is run by Marguerite Dunitz Scheer, who pioneered the self-regulation approach. Estimate 15,000 Euros for inpatient treatment and 8,500 Euros for outpatient treatment (arrange your own lodgings). Treatment can last up to three weeks. My friend Olga has visited the Graz program and recorded some excellent notes about it here.
- Contact Markus Wilken, the gifted feeding specialist who came from Germany to help Heath become an eater. He is now in private practice and collaborating closely with my great friend Jennifer Berry of Spectrum Pediatrics in Virginia. Markus will be employed through Spectrum Pediatrics to educate families and feeding therapists in the U.S. about intensive tube weaning and tube management. Jennifer was Heath's first occupational/feeding therapist, before our move to Seattle, and her intuition, intelligence and compassion were immense gifts to our family when Heath was not yet ready for weaning. She and Markus are a dream team! To obtain an evaluation from Markus, email him at: firstname.lastname@example.org. If you are a health care professional interested in setting up a continuing education workshop on intensive weaning and tube management, contact Jennifer at: email@example.com
- Have the wean virtually supervised by Marguerite Dunitz Scheer via NETcoaching. Estimate 1,250 Euros. Although I know many kids are helped by this option, I couldn't bring myself to do it. I was too afraid of being alone and scared throughout the Intensive Phase of the treatment. I was worried that no one with experience would actually have eyes on Heath during those long hours and days. Some moms at Tube Fed Kids Deserve to Eat have described waiting 48 hours for a reply from Graz to emails requesting help during this phase. I think it's fair to say Marguerite is willing to let kids tough it out to a greater extent than Heath did, but in her defense she has a very high success rate.
I knew it was important for me to be as relaxed as possible during the process for Heath's sake, so I opted for close supervision during a home-based wean. (Markus was here at the house 2-5 hours per day and reachable via cell phone 24/7.) If NETcoaching is your best option but you are a bit worried about the loose supervision, have a supportive and educated-about-weaning pediatrician at close range to assess your child's condition. You might end up with a diversity of opinions, but if you are prepared for this, hybrid NETcoaching can work.
- Travel somewhere in the US where hunger-based weaning is practiced. In the Northwest....
- Karen Quinn Shea at Seattle Children's Hospital has a fabulous two-week outpatient program (inpatient for medically fragile children) that has had wonderful success. Karen is a deeply compassionate therapist and her weans maintain hydration throughout. They can take a wee bit longer, but kids don't lose as much weight. Contact her at: firstname.lastname@example.org.
- Gay Lloyd Pinder has rapid weaned children as young as four months and is a wonderfully intuitive therapist. Send her a note at: email@example.com.
- TOFT House in Everett, WA has a program for children over two years old which incorporates self-regulation principles and has had good success. Its founder, Carol Lorioux Loup, met with Heath and I loved her gentle play-therapy approaches.
If you are considering a US program with a strong behavioral emphasis, such as Kennedy Krieger, know that the techniques used can be intensely pressuring, and have created increased aversion and trauma in certain kids. Ask to see video of treatment sessions and put yourself in the child's place.
- Try to persuade a qualified expert to come to you. Can you work with another family or two to cover travel and lodging costs and the expert's fee?
- Educate your local medical team with reams of research and data. Evaluate whether you have the collective wisdom and resources to safely undertake a rapid wean. Have a plan, clear criteria for aborting, and decide in advance how you will manage weight loss and hydration. If your child already eats 50% of his or her intake, my non-professional advice is: go for it!! If your child shows interest in food, tries to grab things off your plate, etc., it's definitely worth a try but you won't know what's under the surface until you are into the Intensive Phase. If your kid abhors food and passes out when they see a spoon, forget a local wean and seek top-notch weaning guidance from Markus. If you do decide to do a wean locally, arrange to have a qualified rapid weaning expert on-call via cell phone should you come to a difficult crossroads and be willing to compensate them for their time.
- Guerrilla weaning, or going it alone against the advice of your medical team. Three words: Don't do it. You may make a wrong call that would violate your child's sense of safety and damage his ability to wean successfully later if you have to abort. Get the best support you can to create ideal conditions for your child as they make their choice: to eat or not to eat.
One last thing: When planning a wean, please take into account Posttraumatic Stress.