We use cyproheptadine as well with good success and no side effects.

Anonymous wrote:What steps have you taken in those 3 years to teach him independence so the medication is no longer necessary?

What progress has he made in those areas?

F off.

DC also has dyslexia. They need the meds so they can learn to read. Sometimes there are no easy answers.

Op here. We have tried boost and other shakes - DC won’t drink them. I make nightly homemade milkshakes with about 500 calories. This allows DC to maintain their weight. I have to coax them every night to drink it.

DC won’t overeat, no matter what it is. Doesn’t like most high calorie foods - won’t eat French fries, hamburgers, potato chips, cookies, etc. DC does eat cake, ice cream, pizza, Mac and Cheese, chocolate, but will only eat a normal serving - I have tried all kinds of junk food and candy. DC only eats a normal amount of food, even if they skipped their last meal.

Thanks for PPs who said it got better as a teen - only a few years away, so maybe then hunger cues will kick in.

What steps have you taken in those 3 years to teach him independence so the medication is no longer necessary?

What progress has he made in those areas?

Anonymous wrote:Ice cream for dessert

not op but wish it was that simple. We offer ice cream, oreos, everything. Response: No thank you. Maybe a different night.

Anonymous wrote:Many parents try big breakfast before meds kick in. I cooked bacon, sausage, pancakes and waffles on the weekend to freeze and throw in the microwave during the week. Some try late dinner or second dinner or good night snack after meds have worn off. Also se give up meds on weekends in order to get more calories.

After trying many other solutions, DS started on meds by K, and weigh loss (on a skinny picky eater ensued).

Agree on the big breakfast, as lunchtime is nonexistent or minimal. Dinner whenever hungry, even if it's not "our dinnertime" for the grownups. Flexibility [for me and DH] is key I found. And another meal late in the evening. Sometimes it's cereal or a big ham/turkey/cheese sandwich. Others some frozen sliders, or ravioli. A milkshake when we're out. When I look back at earlier photos of DS I cannot believe how very skinny he was at the time, even though we were doing our best. Now a healthy teen, still thin, but with knowing a calorie intake he needs, running/working out, it's more muscular thin that just skinny.

Adopting a "food is food" attitude and letting them eat whatever they want, whenever they want. Junk food is great for kids with ARFID because it gives them maximum calories and the food is the same every time.

Over time our DC has become much more open to trying new foods and eating more "healthy things" because we totally took the pressure off. Other parents are hugely judgmental about it, of course, but he's now a 17 year old 6 foot tall athlete.

He also satiates quickly so he knows he has to eat multiple times a day. He is not on any meds but I don't think he really got hungry before age 15 or so. Then he had a huge growth spurt and his appetite became much larger. Before then we tried to remind him to eat but not pressure him. It's a tough balance.

Boost & Abilify (not prescribed for weight gain, obvs, but it's a common side effect) got our 1st percentile BMI DS up to 20th percentile. He's naturally slender plus has sensory related food restrictions. We dropped Boost around maybe 12yo and he dropped down a little bit since then (15yo now), but he also hit a major growth spurt. His food repertoire has expanded over the last few years with less effort on our part.

Ice cream for dessert

Also, cyproheptadine is a very helpful appetite stimulant.

Many parents try big breakfast before meds kick in. I cooked bacon, sausage, pancakes and waffles on the weekend to freeze and throw in the microwave during the week. Some try late dinner or second dinner or good night snack after meds have worn off. Also se give up meds on weekends in order to get more calories.

Boost is what made the difference for us. She had been ignoring her hunger cues for so long that she no longer recognized them. So she started drinking boost on a regular schedule (4 times a day). It is easier to drink than eat so she was able to do that even when she didn't perceive feelings of hunger. As she got better nutrition, she was better able to feel hunger and so better able to eat. She still drinks one boost a day and will never be the most adventurous eater, but the doctors are pleased with her weight, she eats at least one full meal a day plus snacks, and she can order off the menu at most restaurants.

Have recognized nutrition doesn't need to be chewed? It took me a while to get there but that's really where I needed to get. Once I did, I got samples of pretty much every meal replacement drink hoping to find just one that DS would drink - this was after he even stopped eating cupcakes because he just had no appetite. I stuffed him with high calorie/high protein food before/after the meds kicked in and gave him a meal replacement drink (High Protein Boost Chocolate was his preferred choice) for lunch. His teachers were really helpful in helping to ensure he drank it.

I had some concerns that this 'diet' would set DS up for poor eating habits when he got older. The specialists weren't concerned because there was nothing 'behavioral' about his diet. He just wasn't hungry. DS is now 19 and by the time he was in middle school, lack of appetite/weight was no longer an issue. Good luck!

Sorry OP, no helpful insight only commiseration. Mine is 1% but similarly cannot function behaviorally or academically without medication. Nothing we have tried has worked. He should actually probably go up in meds but can't because his weight is a big enough concern that the doc won't (and truthfully shouldn't) increase.

DC has always been naturally slender, and never over-eats. Also a picky eater.

DC started stimulants for ADHD, lost weight (2 lbs), but has only now gained 3 lbs in 3 years. We have worked with a nutritionist and have tried feeding therapy. Those helped DC gain back the 2 lbs, and now gain the third, but now not making additional progress so we stopped. DC still growing so pediatrician is not alarmed. DC is now 10 years old, 3% for BMI.

Fwiw, DC can’t function without their medication — poor behavior and poor academics before they started.

I feel exhausted trying to make DC eat every day. They just don’t seem to be hungry and won’t eat enough to maintain their own weight without being nagged.

If your DC was similar, did anything work?