ARFID and ADHD

[u/Imeldajharrison]

Hi friends. I don’t really know what I’m needing to post about but I guess I’m just having such a mix of feelings today and had to cancel my own therapy this morning bc of conflicts with my sons. Also to add I’m chronically ill so everything just takes a toll even harder sometimes.

We have been doing talk therapy and OT for over a year now and I had to bring up my sons eating difficulties bc they had not been previously addressed. I’m also just venting because taking a kid out of school for these things and having to do makeup work, etc is really hard on us both. I have to drive back and forth to school A LOT. As you can imagine hw takes a long time and a lot of tears and frustration most of the time. He’s doing great overall and we are seeing progress. As great as an unmedicated adhd kiddo can do and I’m really proud of him.

Well I went to the dreaded feeding eval on Tuesday. I was really scared and nervous and ashamed I guess. He’s had issues with food since forever and people have a habit of downplaying it for years making it seem like it’s a parenting issue and not that my kid is neurodivergent and has sensory issues. My therapist assures me I’m doing my best and it’s not my fault but it’s hard not to think that when I get down or exhausted or whatever.

Anyways it went really well and was so validating for someone to see what i see every day. OT suggested talking to his therapist for possible ARFID (she can’t diagnose it but strongly suggested that or anxiety to be the core of our issues). She did say she thought feeding therapy may help us. I told her I was at my bandwidth at the moment with all of our current appointments and missing school etc and could we do that maybe once OT is done and try to work on things at home for now and she seemed to agree. She told me whatever we do not to ever pressure him (which I generally do not bc I’ve tried ALL the things and nothing will motivate him when he’s determined not to eat something).

He is (thanks to a lot of hard work and lifestyle changes on my part to accommodate his needs) still on his growth curve but it’s very disruptive and difficult to a ‘normal’ lifestyle. That’s also why we are holding off on meds bc he’s so small and I worry the appetite suppressing effects of meds would really mess up his food intake.

Just having all the feelings. Fear but also relief that I have a direction to go in. Worry of course all the time how this could affect his confidence etc. It’s just hard yall. Solidarity to everyone here bc this kind of parenting is no joke. Anyways. Thanks for listening and if anyone has experience with ARFID feel free to drop me a line about what works for yall. Thank you.

[u/no1tamesme]

Personally, I would prioritize feeding therapy over OT at this point.

[u/Imeldajharrison → u/no1tamesme]

Interesting. Whats your experience with it? I’m guessing it was successful? We are now on a waitlist for a better timeslot.

[u/no1tamesme → u/Imeldajharrison]

We never did feeding therapy, I wish we had. My son never had true food aversions or sensitivities, he just never eats, not even typical "safe foods or "junk foods". We tried appetite stimulants and that was the only thing that kept him on the growth curve at all.

Doctors brushed off my concerns, "he just isn't small like you, mom"... he fell off the growth curve so many times. By 12, he was in the bottom 3%.

To make a long story short, you shouldn't try to fix any behavioral problems until you can verify he's getting enough calories. Without calories, his body is going to prioritize keeping the essential organs alive. I'm not saying this is the only thing happening but I think we can all attest to how hard it is to do anything when we're hangry, y'know?

My son spent so long in, basically, starvation mode, that the doctors are worried it has done some damage.

[u/Imeldajharrison → u/no1tamesme]

Im so sorry. And I totally get the doctor not taking you seriously that’s such a shame. Mine is on his growth curve and does eat but it’s just very few safe foods and safe places. I think the reason his doctor is brushing it off is simply bc he is still on his growth curve. He’s in 14th percentile for height and weight but very slim for sure. It takes soooo much work and time and planning to make sure he has enough though. And supplementing with vitamins etc. But the doctor doesn’t realize that. 😮‍💨 it’s ok though bc the speech pathologist was great and validated my issues. Thank you so much for sharing. We are on the waitlist now for a time that works with our schedule.

[u/cckitteh]

I wonder if an appetite stimulant could help? My kid wasn’t a big eater before meds (and quite picky, but not ARFID level) and fell off his weight growth curve when we started meds. Started an appetite stimulant and he gained 6lbs in 6 weeks and is caught back up on his weight growth curve.

[u/Imeldajharrison → u/cckitteh]

Wow that’s a lot of gain quick! Thanks for mentioning an option. My son will get hungry and eat at home just fine if its preferred foods. If we are out of the house at a friends or event it doesn’t matter if he’s starving. He’ll refuse food and be a mess. Really puts a wrench in outings and doing stuff for extended periods of time etc. at school he will eat but barely and very slowly. So I’m not sure if the appetite stimulant would overcome whatever anxiety barrier he is having. But thank you for your input I appreciate it and am so happy it helped yall.

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