ARFID Support With and Without Kaiser

I have a 12 year-old boy with ARFID. He does not have Kaiser, so hopefully you will get some good advice on that front. But if you decide to go outside of Kaiser, here are a few things I have found helpful...

UCSF's eating disorder clinic is comprehensive and thorough. Waitlists are long, but they are generous and responsive at providing alternate suggestions to help you stay afloat in the meanwhile. So even if you don't want to seek treatment through them, you could consider emailing to ask for their list of resources. For example, they emailed me a list of all bay area therapists who treat kids/teens with ARFID (but good luck finding one whose waitlist is not full/closed!) UCSF also connected me to a resource I have been using a lot: the monthly parent support group on zoom run by the therapists at EDTLA: https://www.eatingdisordertherapyla.com/arfid-parent-support-group/

That has been a GREAT source of general info and support. Highly recommend. 

We also did a multi-month foray into receiving treatment through the currently-running Stanford study (also learned about that from UCSF). It was actually not the best experience in our case, but there are different treatment arms in that study. And of course every case is different, so what wasn't great for us might be terrific for your family. Definitely worth looking into. And I believe there was a study being run through Duke University for kids ages 5-9 (also heard about that from UCSF). 

Finally, depending on what type of ARFID your child has, it might be useful to explore Occupational/Feeding Therapy. We did some work with Nikki Zader, an OT at Child's Play in Lafayette. If you get to a point where your child is willing to learn how to eat more foods and just needs a program to make it doable for them, Nikki will work with you to craft that program. She is a really lovely person, and she did help my son make some headway. (I should caution that the kind of work she does is kind of similar to exposure therapy for a person with a phobia, so you need a certain amount of preparedness or buy-in from your child in order for it to work. But Nikki is really great at finding the sweet spot for individual kids and helping build the buy-in.) 

Please get in touch with me if you want to talk more. Most people haven't even heard of ARFID, and it can be a really lonely road. 

Hello  - 

my 13 year old son has ARFID. We do not have Kaiser. We started working with Jill Rodgers-Quaye in Oakland about 18 months ago and it helped quite a bit. Our son's BMI was very low when we started and is now totally in the normal range. I would love to connect with you outside of this if you want to get my info from the moderator and email me to more fully share our experience and journey with ARFID. Although we still struggle with eating and getting enough calories in him on a daily basis, he has made great strides, and some key things changed through therapy that allowed us a bit more flexibility as a family. We have had to pay out of pocket for therapy, which is not cheap, but has been worth it. 

take care

Outside of Kaiser I would highly recommend Dr. Lauren Hartman, MD at https://www.aspengroveayam.com/. 

Cannot recommend Lauren Hartman enough. She nursed my kiddo (and family!) through anorexia. She’ll also be able to link you to all the other local resources that exist. Also Healtjy Teen Project was a godsend when we needed more help. This is so hard so please also take care of yourself.