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coarfiddad

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Reply with quote  #1 

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.


Breakfast:
Waffles
French toast
Pumpkin pie (semi-seasonal)
Egg nog (seasonal)
Pop tarts

Daily multivitamin

Lunch:
Crustable pbj
Sugar cookie
Juice pouch
Applesauce

Misc snacks:
Jello
Fruit cup
Goldfish crackers
Welch's fruit snacks
Bananas
Tortillas with butter, cinnamon and sugar
Gatorade

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. [frown]

 

 

EC_Mom

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Reply with quote  #2 
This is such a difficult situation. You are to be commended for doing so much to help your d. 

We aren't physicians here. If it were my kid, though, I would have some suspicions that this is anorexia and not ARFID, or maybe some other variant of ED. In any case, she needs to gain weight and you are doing so great with getting her up to 2400/day. 

The lack of animal protein and fat stands out in your menu. She needs both. If it's ARFID then there is a different kind of scaffolding and support than there is with anorexia, from what I understand.

This is nightmarish but it can get so much better, as you already have seen with the improvements you describe. Keep reading, keep feeding.
coarfiddad

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Reply with quote  #3 
Quote:
Originally Posted by EC_Mom
If it were my kid, though, I would have some suspicions that this is anorexia and not ARFID, or maybe some other variant of ED.


Decidedly not anorexia. We thought so at first, but she doesn't have the dysmorphia and she actively wants to gain weight. She celebrates when she notices weight gain. She just can't make the connection enough to make herself eat in the quantities she needs to to achieve that. Her vomiting isn't purging. It's not self-induced and isn't timed around meals. She also can't fake it. More often than not, she'll just go pale and manage to hold off vomiting while she has her cocktail.

The way her ED talks when it's fighting her eating also points to emetophobia and ARFID. It's constantly, "I don't feel good, I think I'm going to puke, my stomach feels queasy". But again, she can't fake a migraine. If she is not actually pale and vomiting, that doesn't fly. She's tried in the past to fake vomiting to get out of eating. Throws herself in front of the toilet and spits the food from her mouth in and makes coughing noises. Nope. If she's actually sick, she vomits IMMEDIATELY. Not after putting on a performance. I've pointed out to her therapist and to her, her ED doesn't make her vomit. He makes her pretend to to get out of eating. That tactic hasn't surfaced in a few weeks. Probably because with this latest bout of migraines she hasn't had to.


Quote:
The lack of animal protein and fat stands out in your menu. She needs both. If it's ARFID then there is a different kind of scaffolding and support than there is with anorexia, from what I understand.


Yeah, she's practically an ovolacto vegetarian. We're focusing on calories and carbs while refeeding and getting the protein and fat from eggs, dairy (cream/butter), and supplements. We're working on getting animal protein back in as we expand variety in dinners.

We're working with her therapist on the different support for ARFID. Doing my own research is what led me to this board. The local ERC has an adolescent ARFID program, but it's been by the gods' grace she hasn't needed IOP. We've moved up to weekly FBT from biweekly and the ED team is content with that as long as her weight gain continues to progress.
Foodsupport_AUS

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Reply with quote  #4 
It sounds as though you are doing very well getting things moving with your D. Great that you are getting consistent weight gain, the first part to getting her into a physically more healthy place. 

Have you looked at cyprohepatadine for her migraines? This is an antihistamine that has had some benefit for abdominal migraines but also has a role as an appetite stimulant, and has had even limited use in anorexia.



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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
coarfiddad

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Reply with quote  #5 
Quote:
Originally Posted by Foodsupport_AUS
Have you looked at cyprohepatadine for her migraines? This is an antihistamine that has had some benefit for abdominal migraines but also has a role as an appetite stimulant, and has had even limited use in anorexia.


No, that's not part of her cocktail. Benadryl is, but I'll run the cyprohepatadine by her primary. Her current cocktail works fine. She takes that and an hour nap and you wouldn't even know she was hurling an hour ago. Even in the bouts like the two week long migraine, she'd still be fine for 24 hours at least.

It's preventing the migraines in the first place that we are working on. She's doing 40mg of amitriptyline nightly. Her primary has talked about putting her on something else if that ceases to be effective. Cyprohepatadine might be one of the alternatives she's considering.
Mamaroo

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Reply with quote  #6 
Hi Coarfiddad, so sorry too hear about your d. It's terrible when our children aren't well.

Your d's symptoms are not typical of either ARFID or AN. My H gets migraines often and the following triggers a migraine: being dehydrated, spicy food, eating after dinner. He also takes amitriptyline, but when his sleep is disturbed during the night, that triggers a migraine as well. My h used to suffer from stomach ulcers, so when ever he eats something that upsets his stomach, he would get a migraine the next day. Same with coffee on an empty stomach and it goes without saying that he doesn't drink alcohol.

As for the vomiting, if it's involuntary, you can try aloe vera juice. I give it to my d, because she would complain that eating makes her nauseous. Aloe vera juice strengthens the stomach lining and I give a glass a day until she stopped complaining about being nauseous.

It could be that your d doesn't feel thirst as normal people do. Your probably needs more water, monitor her water intake, especially if she is active.

It might be worth looking at gastro intestine causes for your d's weight loss. Have you tried going gluten free for a while to see if out helps? My d tested negative, but going gluten free for a couple of months during refeeding really helped her to gain weight. Another possibility if celiac disease. My friend's d tested negative for all the standard tests, it was only when they did genetic or dna testing that she texted positive for the illness. Now she is flourishing.

Wishing you all the best!!!!

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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11 in March 2017. Challenging fear foods and behaviours now.
Torie

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Reply with quote  #7 
Hello, and welcome.  So sorry you needed to join us here.

I just have a couple of small suggestions.  I wonder if it would be possible / useful to wake her up with a smoothie in hand, "Here, drink this" and then she can roll over and go back to sleep.  Several forum members have found this helpful.

Also, I'd really suggest that the term "princess bites" be discontinued.  Although I would find the term appealing in a different lifetime, it's really not great in an ED household.  If she doesn't like mice, maybe "mouse bites" would be an alternative.

Finally, I support the suggestion to increase animal protein.  Whole milk is a great beverage, and meat is really helpful.

You're doing great.  Keep swimming. 

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
tina72

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Reply with quote  #8 
Hi and welcome from Germany,
no matter what you call it, ED is ED. Some do never have body dismorphia, but hardly eat and drink nothing and lie about food intake is typical AN.
But you do not need to know what special type of ED it is, you "just" need to make her gain some weight.

"Her diet is limited in variety."
She should not be in charge for food amount and sorts. You should plate what a normal teenager would eat or what she ate before ED. Or what you other d is eating [wink]

Try to make a diary and write down what she ate to see what triggers migraine and what not. You will need to do a lot of experiences.
If she is o.k. with pasta, try to get some canola oil or double cream into the sauces. Her brain needs a lot more fat than "normal" people for recovery.
Try to serve some creamy soups like califlower soup or mushroom soup. That looks "healthy" and "vegetably" and you can easily add cream and melted cheese into it.

Tina72
toothfairy

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Reply with quote  #9 
Hi there, 
Welcome, and thanks for all the detail.
My first thought is that she has anorexia or atypical anorexia.
Or maybe its a mix between ARFID and AN and Emetophobia and we can call it EDNOS or maybe one has morphed into the other.
Regardless, as others have said , she needs to be re-fed and needs treatment.


In your shoes right now I would make contact with Dr. Nancy Zucker at Duke, whom  is an ARFID  expert who is pretty good about answering parent emails and might have some guidance for you.
I have just found this email address   nancy.zucker@duke.edu

__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery,  and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
exhausted

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Reply with quote  #10 
Fellow Dad,

In reading through your agonising story, there are a few things that I would like to voice that might not help your daughter directly, but that might help you.

My AN daughter was diagnosed fifteen months ago, and in the early days, I too needed to make the distinction that she was an 'accidental' anorexic. Her circumstances were not her fault; there were complicated historical, (real) medical factors. She wasn't some shallow model-wanna-be, obsessed about her looks. She was an intelligent, high-achieving, and confident young woman.

Eventually, though I came understand that there is really little difference between what I had considered blameable and non-blameable sufferers of eating disorders. In fact, the concept of blame, and good/bad causal explanations, has little value in getting our daughters and sons healthy. Eventually, there may be time to address the triggers of the disease, but our focus has to go to maintaining some degree of medical stabilisation, while leading the sufferer to a desire and commitment to recovery.

As my 16-year-old daughter quite often reminds her mother and I, this is not OUR recovery, it is hers. As parents, we can manage a lot - we can push our children, we can push their medical teams, we can spend our nights researching our children's (nearly always) 'unique' manifestations of eating disorders, we can seek out treatments, specialists, and therapists, and most importantly, we can feed and feed and feed. What we cannot do is force a cure. We cannot flip a switch, wave a wand, or deliver a magic pill. 

I know others might find my comments defeatist and negative, but I think there is a lot of value making sure that we remain emotionally stable enough to support our children as best we can. Living in the present - what do we have to do TODAY, deserves much for focus than dwelling on where we have been, and where we hope to be in the future.

I just came across this variation of the Serenity Prayer that I found incredibly empowering:

To (choose your higher power) God, Self, Infinite Master, Mother Nature, Heavenly Father . . . :

Grant me the serenity to accept the people I cannot change,
the courage to change the one I can, 
and the wisdom to know that one is me

So my kernel of advice in all of this is be the most supportive version of you that you can be, whilst making sure that don't get swallowed by the dysfunction that surrounds you. This journey will not be an easy one, and catching it early is no guarantee of a quick fix. Hard times are ahead. Be kind to yourself.

Strength to you, your family, and especially your daughter!
toothfairy

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Reply with quote  #11 
Hi Again,
I came across this yesterday and wanted to draw your attention to this too.
This may not be anything like what you are dealing with, but just throwing it in...
There is also  an illness named Conversion, I came across a teen yesterday on another forum that had a diagnosis of anorexia and conversion.
I had never heard of it and looked it up, I thought it might be of interest to you....
Here are some results........

https://www.ncbi.nlm.nih.gov/pubmed/6869584

https://ajp.psychiatryonline.org/doi/abs/10.1176/ajp.140.8.1019?journalCode=ajp

http://www.psikofarmakoloji.org/pdf/22_11_124.pdf

__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery,  and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
EC_Mom

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Reply with quote  #12 
Exhausted, I respect your experience. I disagree, however, with the suggestion that the sufferer has to be led to desire and commitment--except insofar as feeding will, slooooowwwwly, produce a brain change that will eventually allow for recovery of normal mental functioning.

It was empowering to discover that FBT does not require "desire to recover" for the patient. It means that it is possible even when the patient doesn't want it. 

Also, I thought a lot about the serenity prayer (the regular one) when I was refeeding. It is counterintuitive, but AN parents have to be UN-serene, have to NOT accept the incredible obstacles that this awful illness puts in the way of recovery. It required from me an awful, exhausting, traumatic amount of energy and was NOT healthy for me. But as a mom I was ok sacrificing my own short-term mental and physical health to get my kid better. (And I had EMDR later for trauma, so it wasn't all short-term, some was longer-term.)

It sounds like you recognize this in your post, saying it's about self-care for the longer term, which is true--it's a marathan of refeeding, not a sprint. Maybe I misunderstood some of the other elements.
exhausted

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Reply with quote  #13 
EC_Mom,

And I too would, respectfully, have to disagree. I agree that FBT is amongst the best protocols for MANY sufferers of Eating Disorders. It does not however, guarantee a recovery. Re-feeding MAY produce a brain change. However, despite parents' best efforts at FBT, the shift unfortunately does not always come.

Recovery without ANY desire, acceptance, or commitment, I believe, is unlikely. Whilst that commitment certainly does not have to be there at the onset of treatment, at some stage, the sufferer must develop a normal relationship with food, and needs to be able to make his or her own decisions. Independent decision-making absolutely requires commitment. Furthermore, if a child has an predominant feeling of powerlessness, then creating an environment where virtually all power and control is taken away from them, may re-enforce that sense of powerlessness - making it even less likely that they can connect to their own inner strength. 

Not saying I'm right, and you are wrong - just a different perspective, [wink]

As ever vigilant parents, we must relentlessly work towards a recovery for our children that allows them to successfully live in the world, and gives them the tools to navigate the problems they will inevitably encounter in their lives.

For THAT (back to Colorado Dad), you need strength, resilience, compassion, acceptance, and a bit of self care.
tina72

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Reply with quote  #14 
Hi,
normally I am pro different perspectives, but in this case I think this discussion will not help coarfiddad.
His d is 13. She is sick. She needs to gain weight.
There is no need for commitment and she doesn´t have to agree with refeeding at this point.
If it were cancer, you would not discuss chemotherapy with her or wait for her commitment.

In my experience, some desire for recovery comes after WR. Let us help him to get his d there and then see who is right [biggrin].

Tina72
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