F.E.A.S.T's Around The Dinner Table forum

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

Join these conversations already in progress:
• Road To Recovery - Stories of Hope
• Events for Parents and Caregivers Around the World
• Free F.E.A.S.T Conference Videos

Visit the F.E.A.S.T website for information and support.

If you need help using the forum please reach out to one of the moderators (listed below), or email us at bronwen@feast-ed.org.

Need to talk with another parent? F.E.A.S.T. parents offer peer support via:

atdt31_US Show full post »
atdt31_US
Someday after I have taken a six month nap, I will try to find the resources (time, energy, accurate memory) to write a letter to her medical providers over the years.  There are things they should hear about how they helped and in many cases hurt the cause.  It is truly staggering how uninformed so many high-level providers are in the realm of nutrition and even how to handle a somewhat complex or atypical patient.  So many hours of strife and stress that were completely avoidable.  
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
Quote
atdt31_US
Update:  I am writing this in primarily for journaling purposes and to serve as a starting point for pulling together relevant info and records as we (potentially) add to the medical team and potentially explore an alternative diagnosis to ARFID and Anxiety.

1.  Two pictures are worth two thousand words:  First is height/weight charts showing clear progress since our most current “re-feeding” strategy was begun a little over a year ago; Second is BMI chart showing same forward progress.  

Screen Shot 2019-07-03 at 8.41.38 AM.png 

Screen Shot 2019-07-03 at 8.42.09 AM.png 


2. Unfortunately, despite the progress in some ways we feel no closer to normal life (which this kid has literally never had).  In hindsight, some issues she had over the years stand out as potential clues to a picture that is different than ARFID or ED being her “main” issue (although the most dangerous).  They include:
 
a.  Actively and intentionally resisting feedings as early as two weeks of age.
 
b.  Early strep (9 months)
 
c.  Early and frequent sinus infections often requiring multiple rounds of antibiotics to clear
 
d,  Early hoarding of food wrappers and trash that she tied to sentimental experiences.  At one point we found a cache of Dove chocolate foils that have the little printed messages on them … she wanted to keep them to remind her of her parents when we die.  I have not found that in my records yet, but I think she was 3 or 4.  I monitored the hoarding thing for lots of years and in most ways it seemed somewhat age-appropriate or maybe slightly excessive, but she did gradually come to be able to throw things away so I figured it was just a phase (there is hoarding in my mom’s generation so I was pretty on top of watching to see if it resolved). 
 
e.  Strong separation anxiety and stranger anxiety for lots of years, seemingly more than her peers even as an infant and toddler (although not always a bunch stronger than her twin)
 
f.  Fungal colonization in her esophagus found in 2013 on a scope
 
g.  Sudden and first-ever physical/outward manifestation of anxiety in 2013 …. Happened to be close in time to the fungus and its strong medication.  Also coincided with a strep (or sinus?) infection for which she was on two rounds of antibiotics.  Also coincided with having very recently started Periactin as an appetite stimulant.  The anxiety showed itself by complaints of a “scared stomach” which I interpreted as jittery or like butterflies based on her limited vocabulary at the time.  She clearly disliked this brand new sensation and the only small relief from it was to curl up on her shins in the fetal position.  She also had visual disturbances.  We, and her doctors did not argue, assumed it was from the Periactin (known side effects are anxiety and hallucinations).  So we quit the Periactin and in fact gave her a placebo and the symptoms greatly decreased. In the light of 2019, however, what seems like a temporal relationship to the Periactin could also have been a reaction to the Strep and the decrease in symptoms coincides with the second round of antibiotics clearing the infection just as much as it coincides with stoping the Periactin.
 
h. Had a panic attack in May 2017.  First ever … I had never seen anything like it…. Talking like a three year old (she had just finished 5th Grade); repeating over and over “home” (we were on our way out of town); panicked eyes; just not herself in any way.  I recall walking through the hotel parking lot and demanding my husband help flank her because I honestly thought she might bolt (also thought she could try to open the car door as we were driving).  Nothing like my normal kid …. Called therapist from the hotel and she talked us through how to respond to a panic attack and what to do the next day if it happened as we were boarding a plane.  I chalked it all up to:  lack of sleep with end of school year excitement for several days; nervous for flight; leaving cats for first time; down on calories due to hectic end of school year and giant calorie-sapping field day; etc.  NOW I have laid out everything in a giant timeline and this “panic attack” was sandwiched between an illness in which she tested negative for strep but even the doctor was surprised and said she looks quite ill; my notes at the time described it as something clearly different but I could not tell what and that she was exhausted/fatigued in a new and extreme way.  I also have notes from about two weeks before the panic attack that she had a new “diaper rash” that was bright red and it hurt her to sit and do homework.  Then in June 2017 she had a major blood panel done after some concerning eye symptoms and it revealed an elevated ANA (but nothing else out of norm on blood labs).  NOW I wonder if the diaper rash was a strep infection.
 
i. Had Seventh Grade vaccinations in June 2018 and within ten days, had started having tics for the first time ever … started as head/neck/shoulder and leg kick and quickly added in a vocalization.  Seemed like an odd first-ever tic expression.  Also, she denied any type of “urge” many feel before a tic.  Neurologist said “lots of kids get tics” and it will go away.  It did in fact stop happening after a couple weeks.  In the months leading up to the vaccinations and tics, she had been restricting in a new way for her (ditching lunch at school and fibbing about it). 
 
j. Several colds/sinus infections December 2018-Feb 2019 documented,  Then sick again in early March but they thought viral.  Did not resolve as expected so they said secondary sinus infection in early April and started antibiotic. Got a little better but then worse again… they monitored a bit then did start a second antibiotic.  Right in there, she had MAJOR panic; school refusal; needed me with her 24/7 (like in the bathroom in order to shower); baby talk; wild terror-filled eyes and giant pupils; basically not rational; new stutter she had never had a hint of before; missed almost two months of school at the end of the school year.  Symptoms started to abate as the second round of antibiotics ended; but coincidentally that was also when the school year ended so initially put the improvement to no more school stress.  One of the oddest things about that time was that her eating increased. With missing school all those days, she was down 500 calories just on supervised school snacks.  And there were many days we also abandoned the morning shake that is about 500 calories on its own.  But rather than stagnate or lose weight, she continued to gain.  Even after the symptoms went away, she has continued to eat like a normal kid.  I have literally never seen her do this.  I don’t even make the morning shake anymore.  I don’t have to prompt her to eat.  I half fear this is binge activity, but I will examine that further if need be as time goes on and as we sort through if there is a proper diagnosis of something like PANDAS/PANS.
 
3. The above is just a sampling of her issues over the years.  I just never got comfortable with these all being normal anxiety or even regular panic disorder.  And she has never fit well into a typical ED presentation, at least as far as I can tell reading on here or even in paid consults with Dr. O'Toole and others over the years.  And it was unsettling to always have her stuff be “rare” or a unique presentation, and many times the first of “whatever”  the provider had ever seen (in multiple different areas including eye symptoms).   So I started putting together a more comprehensive timeline, pulling in notes from all providers; stuff I had put on here in real time; emails on patient portals to doctors (these don’t appear in a normal medical record chart shared among providers); etc.  It looked suspicious for PANDAS/PANS.  So we are heading down this very murky path and seeing where it takes us.  It is exhausting to get up to speed on another potential diagnosis and it is even more gray in terms of diagnosis and treatment than EDs seem to be. But we have sunk even more money and time into this, and as of now, have three providers who are saying until shown otherwise, PANDAS/PANS seems to be correct.  We are awaiting blood tests which will neither definitively confirm nor exclude the diagnosis, but they still seem important to have.  We have paid cash for an out of state consult with a top-tier PANDAS expert and he opines she is PANDAS and likely has been since 1 or 2 years of age.  
 
4.  I will say this, if my kid ends up PANDAS/PANS and if that sort of treatment actually ends up making her finally have a normal childhood, then I would bet that in time it is found a ton of ARFID kids are in fact PANS/PANDAS.  There are some very big red flags that my kid does NOT have, but she sure seems to fit this better than anything else.  AND if I am being honest, there is a lot of overlap between a lot of the true PANDAS kids and some of the stories I have read on here for years …. There are great PANDAS resources so if anyone wants help, let me know.  It is definitely controversial (both WHETHER it exists and if so, HOW to treat/prevent) …. But if the camp that says it exists is correct, they have a pretty concise road map to see if your kid should be considered for it.  
 
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
Quote
debra18
Would like to know the end result. Keep us updated. I suspect my daughter has PANS or a reaction to the seventh grade vaccinations as she got Ill overnight. However I am not looking for diagnosis or treatment at this time because she is doing well just from refeeding and I think the treatment side effects and cost is not worth it at this time. She never had strep that I know of and has never been on antibiotics. please let us know what happens.
Quote
atdt31_US

Copying this UPDATE from Sept 7, 2019, out of a different thread I had posted it in, just so this says up to date.  


editing to add: I have no clue why that font is huge or how to fix so mods can feel free if they can...

 
UPDATE:

Anxiety symptoms basically disappeared by May 30 ... and have not returned.  So this new and very intense and physical anxiety lasted from sometime in April until the end of May.  Of course school ended May 24 so it was tempting to think that helped reduce anxiety (she had school refusal most of the last two months of the school year).  

Over the summer she was able to stay home alone (with her twin) all day, feed herself from foods I prepped and left here, played with neighbor kids, spread her wings biking to get nails done, etc , all firsts for my kids to have such independence (they are 13).  She has sat at around 93 pounds for a few months, which is actually pretty amazing imo, given that until April 2019 she was ingesting close to 1000 calories under direct supervision (first morning shake and then two snacks at school) that went away with the school refusal and self-feeding program of the summer.  So to maintain all on her own, intuitively and without any of the "false" calories of morning shake and school snacks, is good.  Her attitude toward eating dramatically changed in late April and her appetite greatly increased in the midst of all this anxiety.  She no longer has the huge swells of starvation feeling, but she is eating better than she has her whole life and basically food is not an issue in any way other than we are going to slowly add in some offering to get weight moving slowly up again and also work in more fruits and veggies that had admittedly been reduced around here in favor of more caloric options.

There has been no anxiety return and we are now a month into this new school year (8th Grade).  She did not have any psych meds that can be pointed to her turn her around (we gave five doses of Prozac then I stopped back in May).  Her therapist recently said we should stop coming weekly and suggested every two weeks is plenty as there is no anxiety.

Over the summer I pushed for medical review from some new doctors and asked them to look at PANS (umbrella under which PANDAS falls -- Pandas relies on Strep as a trigger, PANS can have other triggers).  Multiple doctors have now diagnosed her with PANS and it is believed the "flare" in April-May was likely triggered by the sinus infection that has lingered since early 2019.  We now have a regional PANS doctor who has her on prophylactic antibiotics and is someone we can call for speedy help if we see signs of another flare.  One of the experts opined her first PANS symptoms were likely when she was one or two years old.  (I did an exhaustive chronology based on documented entries in her medical records (1200 pages), entries on this forum which proved really helpful to show timing of certain symptoms, texts and emails to her therapist and other providers ... so basically everything is documented and not relying on recall).  All through the April-May stuff, I kept saying "it is like she has a brain injury" because she was so very hard to rouse and her pupils were so huge and she was so obviously uncomfortable with what was happening to her just by looking at her .... turns out it really was a brain injury in the form of brain inflammation.  Blood tests taken mid-July still showed levels of inflammation markers in the brain at almost double the mean, which is very consistent with the PANS diagnosis.  

Whether the eating issues for a decade or more stem from PANS or were their own thing is unknown.  I am not sure how much I care at this point, but I truly believe they are likely related and I wonder how many other ARFID kids would benefit from PANS type treatment protocol ....  

As she is still in puberty and has not started a period yet, we are of course not going to stop monitoring for any signs of restriction, etc ... but for this moment we are letting her enjoy a normal school year and the most normal time of her life.  

End of September 2019 update

 
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
Quote
atdt31_US
Update December 29, 2019:

1.  Due to PANS diagnosis, been on low dose antibiotic daily since July.  No significant return of any of the things we were seeing that prompted us to investigate PANS (stutter; tics; panic; separation anxiety; odd hand movement; episodes that looked like absence seizures, etc). 

2.  Enjoying a fairly normal 8th Grade school year.  Still lacks the stamina some of her peers have.  Still misses more school than "normal" for run of the mill illnesses.  Have had a few times where I thought a PANS flare was coming ... hard to rouse the main thing, but also some behavior.  On two occasions I think it probably was something PANS related because in those two instances she proved ill ... the first time I thought maybe I just was seeing PANS everywhere but I took her in to ped and to my shock she tested positive for Influenza A (which could absolutely trigger a PANS brain inflammation and cause her to be hard to rouse).   

3.  FOOD-WISE:  unfortunately, the accelerated eating we had seen mid-flare and which seemed to hang on a bit thereafter, has fully abated and we are back to her baseline of not intuitively eating enough to gain.  She is at the same weight now as May 2019 and has grown over 2 inches.  I was unsure if the lesser eating meant a simmering, chronic flare (which often present with severe restriction - but I had hoped the normalized eating had been part of the flare resolving) or if we were fully out of flare and back to plain old Low Volume ARFID.  I consulted with an ED doctor who also works with PANS patients.  She said that although restriction is more often seen with PANS, eating issues can also present as binge in the midst of a flare.  Her take was that my D was binging in the midst of the flare, but it looked like a normal kid eating because of her low baseline.  And this doctor believes the return to lower eating is not evidence of a chronic flare with restriction, but rather, is ARFID to be addressed on its own.  So in our case, quelling the flare (which was essential) also took away the normalized eating (which was binging for her).

4.  So we are now trying to figure out how to reinstitute some measures to start increasing her weight again.  She has enjoyed a few months of "normal" in terms of no shakes, no monitored snacks during the school day, etc.  BUT we probably have to find some way to start some version of re-feeding again as it seems her natural cues keep her where she is, but do not lead to weight gain.  We are considering going off-script and approaching it very mathematically with her .... your bones are frail, you need to finish puberty, your brain is still making vital connections, your body still needs to grow .. sooo, you need to eat "x" calories per meal or per day or however she wants to approach it.  On the one hand, this idea of calories are needed is not new, we just tried to stay away from the "c" word..... but school has made sure, many times over, that she knows how to read a food label.  So maybe I put all that education to good use and teach her how she can keep the footprint small by picking certain foods, by drinking juice or pop or milk instead of solely water, etc.  On the other hand, she is still young even though we have been at this sooooo long ... and I DO believe you all that this can morph, that reading labels is dangerous at this age, etc.  So we are figuring it out slowly and trying to to move to fast but also somehow get the scale moving again.  

5.  Interestingly, I think I am also going to start to "make" her do jump rope or similar for thirty minutes per week.  Her bone density is so low and the nutrition has been off for six or eight months so we can't assume our strides in upping hr bmi has helped her bmd significantly.  We won't do this without medical input, but from what I read it can have very good results.  Seems like a lot of what will help us is counter to what is typically suggested for ED.

That's the update for now.  Hope all is well for you all and anyone reading this coming in mid-stream should know that my kid does not seem to present like most of the kids on here, and so what you might see me suggesting for my kid may not translate well to a RAN or other ED kid.  
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
Quote
Torie
Gosh, ATDT, what a puzzle!  Must be very frustrating.

Every time I read your story, I think about 2 little things from my life ... and then I think no, I'm not going to post that because it's not relevant enough.  But it is somewhat related so I will say when my ED-d was a baby she was always a poor eater.  Stopped breastfeeding earlier with her than with the others because of lack of interest.  She was not interested in eating baby food, and I always had to use one hand to distract her with a toy while feeding her with the other hand.  (She would absent-mindedly open her mouth if I "took her mind off it" with the musical toy.)  The second thing is that her cousin seemed to exist only on cheese popcorn when she was about 2 years old.  Seemed very extreme to me, but none of my business - this girl is now done college and has eaten normally since childhood issue spontaneously resolved.

Not sure why I'm writing this - it isn't really relevant to anything, but is different from the other stories I read here so perhaps it will be of some interest to someone reading this.

Anyway, it's really great how diligent you have been in tracking down all the leads and possibilities.  Sorry there has not yet been a clear-cut diagnosis or treatment goal.  Please continue to share your updates. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Quote
atdt31_US
Thanks, Torie.  On an intellectual level this whole disorder is fascinating.  In spurts I can look at it that way, and wonder what on earth is going on in the body/brain that makes a human not have the impetus to feed itself to thrive.  But as you know, in the trenches, most of the time is spent prepping for, monitoring, or doing dishes from a meal.  I do read a lot (lots of time to surf as I sit across from a kid not eating enough of exactly what she asked for) ... and given her long list of ailments along the way, I feel like I have delved into lots of different medical issues.  There are of course some common strains I see .. but perhaps that would be true no matter what, since they do all relate to the pediatric body. BUT .... it is hard to believe all of her stuff is unrelated and since much of it is objectively seen by providers, I think they likely are related in some way as yet not fully understood.  I suspect that as medicine progresses, this gut-brain connection will be better understood and something will explain the infant that stops feeding so early they would perish without a parent forcing in more food.  Or a kid who will only eat one brand of cracker and nothing else, period, despite what must be a true, physical, hunger. And why do some kids experience that as a phase and some live it every meal every day?  

Will it come down to gut?  Maybe.  Will it come down to brain?  Maybe.  Will it be the basal ganglia?  I sure don't know ... but I do know that part of the brain is discussed in may of the readings about several of my d's issues ... from feeding issues, to a vision-related nerve going through, to the tics and neuropsychiatric things she suffered mid-PANS flare.  

I think the sooner they can find something objective to show up on a test or image, the better, even if it does not come with a ready cure.  The kids and parents would be much better off knowing what is going on and squelching the nay-saying doctors and family members. To show "something" is happening and it is not parenting, or a bad kid, or whatever, would be huge.  
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
Quote
Torie
"I think the sooner they can find something objective to show up on a test or image, the better, even if it does not come with a ready cure.  The kids and parents would be much better off knowing what is going on and squelching the nay-saying doctors and family members. To show "something" is happening and it is not parenting, or a bad kid, or whatever, would be huge. "

So true!

We are at a strange place in time where the first medical / psych clues are being pieced together, but not fast enough, and it's hard to find providers who stay on top of the research.  I'm really grateful we have (largely) progressed past the mom's-to-blame reflex of previous decades, but eager for the improved understanding that will surely come eventually.

I'm really impressed by how well you have done with your d.  She is so lucky to have you! xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Quote
atdt31_US

AT A CROSSROADS:

 

UPDATE/CURRENT STATUS:

*Eating is back to her normal which means unless someone is there to remind, monitor, usually plate, she is not going to ingest enough to grow. This appears to be some early satiety or lack of interest in food with some mild pickiness thrown in for good measure.  There does not, and never has, appeared to be any restriction due to body image or desire to not gain weight.  After almost 14 years of this I cannot be there for each offering and still keep my job, which I need.  Not only that, but she truly needs to learn this ... it seems to me she will have "this" forever and at some point needs to own it and make the choices to claim the life she can have.

*. High BMI was 16.7 (20%) and that was May of 2019, after a summer and then school year of intensive attention to feeding, including morning shakes and monitored snacks at school.  For 8-10 weeks ending June 1, 2019, she had a coincidental illness (PANS flare) that completely derailed eating and in the meantime, schedules and routines changed and she has not had morning shake or monitored snacks over the summer or at all this school year (can’t recall exactly when morning shakes stopped but sometime before August).  Current BMI is about 16.1 (8%) and she has grown 2 inches since May 2019.  

*. She has very low bone mineral density, which was identified in 2014.  She has just started menstruating in the last month.  Her height curve accelerated during the time frame we did all the intensive feeding, suggesting that even though she had always been an expected height at 50%, she perhaps should have been taller had nutrition been better since birth.  She still has chronic severe constipation.

*. She starts high school next year.  She takes no interesest in nutrition in terms of, she wants out of class when offered, denies caring that she can read a food label, etc.  But she could teach the class … when her GI asks questions she is always floored at how much she has absorbed over the years of doctors talking to me about her … so when I recently told the GI I was getting close to wanting to hand her the reins and let her figure out how to get “x” calories per meal, the GI is all for it, saying I do not need to fear I am “creating the world’s smartest anorexic” (my words, expressing fear in teaching her how to count calories to ensure hitting goals) because that ship sailed long ago and if she does morph to RAN, we would already be facing a very educated anorexic.  (I submit if she as going to morph she would have long ago, but who knows.  My greater fear is her somewhat-restricting twin who does not need numbers introduced to her life right now - she is on my radar but so far seems probably okay and like a "normal teen" -- when we try to talk about it she gets rigid fast ... but her life has been filled with an odd relationship to food in our house bc of her twin .. so it is hard to decipher if I need to worry or not .. but closely watching that one for sure).

*. She seems to intuitively eat enough to maintain, barely.  She does not actively resist eating unless she has a tummy ache which we have learned in her is normally a sign that we have gotten behind on constipation meds (she currently takes 2 caps of Miralax daily and I think if we keep that up indefinitely she will hopefully be ok in that regard).  She does want to reach her full height potential and knows that means better/more nutrition.  She hears the words about bone health, and in spirit is all for strong bones but that is so far not a strong enough reward to drink milk or eat yogurt, etc. 

So ….. have any of you done some version of this?  Might be more in play on a board like Cystic Fibrosis or Diabetes, where kids have to have solid goals to hit in order to stay healthy and thrive  … but I don’t belong to any of those boards.  

I would envision some sort of graphic with goals for each day and suggested timing and offerings.  Examples of one big muffin vs “x” number of granola bars vs “x” number of egg omelette and let her see how a granola bar and a glass of calcium fortified juice or milk is smaller footprint and easier/quicker to eat on a school day and gets a big chunk of the needed caloric intake on the day out of the way early.  I don’t know … my hope would be she starts to opt in some of the calorie and calcium rich options she currently shuns because she prefers other things.  

Seems like we have some choices, and I am leaning toward that one given her current level of maturity and the fact that this has been a truly lifelong stressor in the home with no reason to think it will spontaneously abate. 

Options:

1.  Keep doing what we are doing which is loose Magic Plate, lots of prompting and prodding, slow weight gain (it has picked up in the last month or so since we upped the Miralax).  Doing this maybe we keep her in the right direction and wait for more maturity before handing over more responsibility to her.

2.  Go back to the higher level of supervision and stress and “force” morning shakes or an equivalent calorie bomb at least once per day to get back to the 20ish percentile for bmi and see what height does and hope bones are benefitting.  That causes new stressors I am not wild about bc honestly she deserves some chunk of childhood to not be filled with stress.  It would be easier to pick this option if there was a normal to return to, or reason to believe we just need to hit a certain mark and then it will all fall into place and she’ll eat like a normal human to grow and maintain.  Anything is possible, but history has not shown that she will have natural, spontaneous cues to eat enough to gain on her own.  

3.  Do the thing mentioned above, where we put her at the helm to figure out what the day’s caloric goal will look like and hope she finds her groove she’ll see that caloric drinks are awesome, that apples with peanut butter dip are yummy and also go a long way toward hitting a lunch calorie goal … so a bowl of soup and apples with dip are way better than a bowl of soup and a serving of cantaloup —- if doing that, add milk instead of water.  Those sorts of trade offs, hopefully, would be her choice and thus shorten meal times, allow her the independence to come home after school and be trusted to get her own snack, etc. 

Looking for examples of how anyone has implemented some version of number 3, maybe for an adult or other ARFID kid ….. I am not totally sold on it but I am pretty close to doing this to see what happens.  

Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
Quote
atdt31_US
Torie wrote:
"I think the sooner they can find something objective to show up on a test or image, the better, even if it does not come with a ready cure.  The kids and parents would be much better off knowing what is going on and squelching the nay-saying doctors and family members. To show "something" is happening and it is not parenting, or a bad kid, or whatever, would be huge. "

So true!

We are at a strange place in time where the first medical / psych clues are being pieced together, but not fast enough, and it's hard to find providers who stay on top of the research.  I'm really grateful we have (largely) progressed past the mom's-to-blame reflex of previous decades, but eager for the improved understanding that will surely come eventually.

I'm really impressed by how well you have done with your d.  She is so lucky to have you! xx

-Torie


This week, her GI told her she (my daughter) was born thirty years too early ... that medicine will someday understand her body, but right now we just don't.  She (the doctor) then went through some of the many medical advances and diagnoses that have been developed since the time of my daughter's birth.  So you are spot on, Torie, that medicine is starting to piece together some stuff.  
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
Quote
Torie
"So ….. have any of you done some version of this?"
Not me.  Sorry.  The only thing I can think of that is perhaps related is bribery.  I wonder if it would help to give her "points" for the things you want to encourage, for example, either a pound gained or a hefty meal chosen or eaten.  I know that some people do not believe in bribing their kids, but we have used it to good effect in many different types of situations. xx

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

        

WTadmin