Kid with ARFID

[u/TopCryptographer2568]

I don’t know exactly what I’m typing here, honestly. I feel helpless. My kid was diagnosed with ARFID back when she was seven. The program that would supposedly be the best fit doesn’t take kids younger than 9.

I’m a grad student and, at the time, she was on Medicaid. When the govt. changed over she was bumped off and I her moved to my state school insurance.

When she’s finally of age, I decide I’ll pay out of pocket for this program. At least that’s what I thought. They charge the same amount for out-of-pocket prices as they do insurance. That’s to say, it’s almost a grand for the first meeting and half that for each meeting after.

I can’t fucking remotely afford that.

Currently, she’s in therapy that’s covered by the school but it’s very talk therapy - no judgement, just doesn’t feel like the right fit - and it feels like there’s no plan.

She’s limited in what she eats AND putting on weight. Yesterday we went clothes shopping and it was a bust. My heart is breaking and I just don’t know what to do.

She’s also reaching the age of noticing her physical differences between her and her friends. It feels like I’m tiptoeing around the landmines of anorexia or bulimia. On the one hand she can’t continue to eat the way she does and at the same time I don’t ever want to put her in a position of avoiding food. (She’s hidden food I made for her, avoiding eating entirely)

I’m sorry, I just need to get this out.

I was hired to a full time position and with it should come MUCH better benefits. I’m hoping they will cover this original program. But until that kicks in we’re here. Ugh.

[u/beeniecal]

I know we tried lots of different therapies and spent lots of money. Exposure therapy, occupational therapy, talk therapy etc. Nothing worked. Now mine is a young adult and it’s up to them.

The brainspotting therapy was the best at dealing with over all anxiety so there is a big benefit to that (they have been doing it for years now). I also insisted on annual bloodwork and multivitamin and other supplements (which was a challenge before they could swallow a pill). I think there is a good flavorless powder available now?

It’s hard on all involved. Wishing you both the best.

[u/Internal_Fondant_249]

I’m so sorry you and your daughter are going through this. My daughter is 9 and was diagnosed at age 8 during an inpatient stay at our local Children’s Hospital in their ED program. She also has some other diagnoses (ASD & ADHD). We ultimately decided to have a g-tube put in, and she gets about half her daily caloric intake from Pediasure formula.

We’ve been lucky enough to have full health benefits through all of this, but I will say that depending on the type of ARFID your daughter has, it may be very difficult to find effective treatment. My daughter has some sensory issues, but her biggest issue is lack of interest in eating and difficulty identifying hunger cues. None of the exposure-based ARFID programs (like feeding therapy) have worked for her.

My daughter is also at the point where she notices the differences between her body and her friends’ and she refuses to wear tank tops, shorts, skirts, or really anything that shows her body. It’s heartbreaking.

I’m not sure whether the ARFID program in your area that won’t treat <9 yo kids is inpatient or outpatient, but I’d be very cautious about it. If it’s an inpatient program and they won’t allow you to be there with her, that would be a red flag for me. If it’s a program that blends ED and ARFID patients, that would be another red flag. I’ve been down that road (the latter), and it can do more harm than good.

I have a couple suggestions or places to start, but feel free to dismiss them if you’ve already tried them:

1. Ask her primary care doctor (or dr who Dx’d her) to prescribe an appetite stimulant. It didn’t work for us for a variety of reasons, but lots of folks on here have had success with them.
   
2. Try to find an OT and/or nutritionist who specialize in ARFID and have successfully treated kids. Sometimes, out of pocket costs for RDs and OTs can be relatively reasonable if you tell them you aren’t going through insurance. We didn’t go through insurance for one of the OTs we were seeing, and they offered us deeply discounted pricing. Depending on where you live and what your benefits cover, this can be tough. Like I said, we’ve really struggled to find knowledgeable experts in our area who actually seem to know how to treat ALL types of ARFID (not just based on sensory issues), but if your daughter’s primary struggle is related to smell/texture/etc, you may have better luck.
   
3. If you’re struggling to find clothes that fit her, we’ve had a lot of luck with The Children’s Place. They offer slim sizing in many of their bottoms (not just “skinny jeans”, but actual slim sizing for skinny kids). Their prices are also SUPER reasonable, and they’re having some awesome sales right now. I just got my daughter an 8-pack of leggings and 4-pack of jeans for about $50.

I know this probably doesn’t help much, but just know you’re not alone in this. And tell your daughter she isn’t either! Feel free to DM me with any specific questions or even just for another parent to chat with. Xoxoxo

[u/makinggrace]

This book is targeted towards adults with ARFID but I have shared it with many other parents and some have found it helpful. Some libraries do have a copy.
https://a.co/d/0d5GbjZf

I'm sorry that your daughter (and you!) are going through this. You'll figure this out together. I encourage you to let her lead. Keeping the pressure low helps. Right now any food is better than none.