42yo married dad to a 13yo (5'3", 76#) daughter with ARFID. Her ED has been driven from abdominal migraines causing vomiting for as long as we can recall. I can remember holding her at 3 or 4 while she threw up.
The migraines have been our biggest struggle, trying to get her to realize she needs to eat and drink well in between for the days when she can't hold anything down. She's always been on the low end of the growth chart and we queried doctors all along about what to be concerned about. They all said as long as she continues to grow along the curve and has energy to play then she is okay, but to keep an eye out for any sharp drops.
This summer her ED took over HARD. She was hardly eating or drinking anything. We caught her in lie after lie about what she'd had. She ended up in urgent care twice in 10 days for dehydration and being unable to keep anything down. (Her migraines get her into a cycle where she can't/won't eat or drink, which worsens the vomiting, and spirals her further down.)
We made appointments with nutritionists and got a referral from her primary care physician to a therapist. When we saw how many calories she "should" be getting and really looked at how much she was taking in, we were SHOCKED. We had thought for so long that our other younger daughter just had a huge appetite. Turns out that she was just normal, and the older was getting by on less than 300 calories on a migraine day and at most 1000 to 1200 on a "good" day. Definitely averaging lower.
We were fooled by things like her love of berries and cherry tomatoes. She would sit and eat an entire tub in one sitting. We were thrilled she was at least getting her fresh fruits and veggies, not even considering how void of calories they were. She's also always had frustraing habits like "princess bites", eating one pea or spaghetti noodle at a time.
The past several months have been a challenge to say the least. They're made more complicated by her also being diagnosed with ADD. Her ADD stimulant hasn't had the potential appetite suppressant side effect, thankfully. She eats as well or not regardless of having had that med. However, her doctors are now concerned about finding tachycardia and don't want to worsen it with the stimulant. They're in process of switching her to a non-stimulant ADD med.
She's on a low-dose anti-depressant that is helping her migraines. The challenge is that as she gains weight, the dose is less effective, so we are playing cat and mouse of her outgtrowing the med's effectiveness. There are other meds we can also try as she gains weight.
She has a cocktail of meds she takes when a migraine hits. She can occasionally head it off before she starts vomiting, but it knocks her out for an hour which then throws off her eating schedule and it becomes a challenge to make her calories for the day. If she doesn't get enough sleep, she then risks another migraine. If we let her sleep too late, there's just not enough hours in the day to eat everything.
We are still in the re-feeding stage, but she is showing progress. In general, she won't eat or drink unless she is watched. We have the school cafeteria staff keeping an eye on her and if she starts struggling with eating what she needs, she has to eat with the nurse. I have to personally watch her drink her fluids and monitor her urine color or she'll just "forget".
I do see progress, though. I haven't seen princess bites in a couple of months. Generally speaking, if there is food or a fork in her hand, she will eat. That's a change from when she would sit and play forever, hours if we let her. Previously, I would swear she could sit and chew a bite of mashed potatoes for five to ten minutes, being averse to swallowing. Her rate of eating has improved greatly. She still takes longer than anyone else to eat, but she's eating more than she used to and getting that much in comes with much less struggle.
I'm keeping my eye on the percentile weight for age on her growth chart. It's hard because all her calories are going to height. In the past couple of months, she's shot up from the 25th percentile (where she's always been) to the 50th. That means she's not gaining any fat, which means hydration continues to be a challenge with no place to store any water she takes in. She's growing at least, and puberty is progressing slowly. I looked up my own percentiles from weights I could remember. I was in the 4th percentile of weight until probably my mid-20s. Difference is that I ate like horse with a hollow leg for as long as I can remember. We'll continue to refeed her and push the calories, but I question if she'll ever have a "normal" BMI. I've seen what others have posted as thier kids' lowest weights and I would jump in joy if my daughter attained that. I don't know where to set a target weight. I'll be happy if she is just back to being even on the growth curve, which she is JUST shy of.
I look at other kids her age and some are *almost* as skinny but they are in the DISTINCT minority. Even long and lean women like Uma Thurman and Taylor Swift are estimated with normal BMIs. It scares me to realize my daughter is so much thinner than them.
Beyond the med side effects for her ADD, keeping up with schoolwork is a challenge. She pulls largely As and Bs when she does her work, but quickly dips to Cs and Ds when she blows off her assignments. Many is the night when she sits in my home office doing her homework so I can keep her on task while I put her milkshake straw to her mouth every couple of minutes. When she gets off the rails with migraines and misses school, it gets into its own spiral with keeping up her calories and catching up on schoolwork.
She is generally friendly and social and has a group of supportive, achieving friends. She has a bit of an instinct to keep other self-destructive kids at a distance. We have her best friend over about once a week on weekends. It's hard on her when she has to eat with the nurse and miss her friend time and that is a good motivator to eat well.
Things tanked hard this summer, and we started treatment immediately, but I still stress how long it will take to undo 13 years of bad eating habits. I'm praying we "caught it early" from an ED perspective, but I just don't know how deeply these habits are ingrained. The migraines recurring doesn't help anything, and just gives her ED a voice to reinforce why she shouldn't eat.
There are days we get through by our fingernails that she eats well, gets responsibilities done, and gets to bed without trouble and I think "we can do this, we'll get through". Then there are days where I am envisioning worst case scenarios and losing any glimmer of hope that she'll eventually have a healthy life. This forum helps in those moments. I'm working through honey_badger's thread.
It can be hard applying just the right amount of pressure/reminders. If she's in a mood, being a rock at the table and glancing her general direction is "screaming at her" and her ED will react accordingly. I've made progress, but still working on externalizing her ED from her. I still falter and will occasionally focus on how she's letting ED get the better of her instead of helping her through it. I find myself walking on eggshells leaning on her to eat and trying to hold back lest the pressure turn to anxiety and create another fear food.
My stress is complicated as I work for our health care provider as an IT project manager. That means we have great coverage for her therapy and provider team. But it also means that I have no respite from her condition being on my mind. Everything I do at work reminds me of how it is going to affect her treatment somewhere downstream. And vice versa. If I take her to an appointment or interact with her team, I see systems and workflows that I'm dealing with at work and stress whether I'm going to be able to keep up with work and still care for her.
She still hasn't had an "official" ARFID dx, but is dx'ed with an ED. Her diet is limited in variety. I internally panic if she is "not in the mood" for something. I get a knee jerk freak out that she's going to eliminate more from her limited list of foods. It's a challenge to push too much bulk into her lest it trigger an actual migraine. But then it is even harder because eating too richly will have the same effect. I envy some of you who can get huge milkshakes into their kids. She's okay with the HWC, she just can't take that much bulk. We're limited to right around 8-10oz per shake at 600 cals. We're at about 2400 cals/day, but we're trying to work back up to 2600. That's where we were before two to three weeks of migraines set us back. (Dosage needed to increase and then take effect.) Though I can remember when we thought 1800 was going to be impossible.
Pumpkin pie (semi-seasonal)
Egg nog (seasonal)
Welch's fruit snacks
Tortillas with butter, cinnamon and sugar
Cookies and cream milkshake
Dinners vary. Very limited, does "okay" with pasta. Will frequently request a Boost Kids Essential in place of dinner.
Animal protein - very small portion, 1-2 times a week
Our other 10yo daughter is working on coping. She is seeing a therapist for dealing with her sisters' ED. She also tends to internalize stress so greatly. She would always beg and apologize for being "so much trouble" when she was sick with a cold. For years, she was the one we worried about being at risk for depression and anxiety. Occaisionally I worry if she's going to exhibit disordered eating if for the attention if nothing else. But if I see her have a light meal, she more than makes up for it at the next one. If I start wondering if she's eaten, the next moment she is in the snack cabinet making herself something. But she still carries all the stress and tension in the house of her parents caring for a sick sister.
DW and I are partnering. We manage to give the other a break and so far have managed to tag team being overwhelmed. When one is in despair, the other can step in. As everyone here knows, however, it is so hard. In there, it's a struggle to also make time for eachother as for ourselves. 99% of my time is focused on my daughter. Even if I'm on "break", I struggle to free my mind. We took a family getaway to a cabin last month. I woke up disoriented from being in a strange place with that feeling of waking from a bad dream, but in reverse. When I got my bearings, I realized I had woken up INTO my nightmare.