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

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atdt31_US
Anxiety and appetite both way up.  Long story with my d (13) but …. Difficult feeder since birth.  BMI in the 12’s unit l finally went off-script of the doctors and started a home-based refeeding program that has been pretty low-stress compared to full LSUYE.  I took off seven weeks last summer and fed, fed, fed.  She started 7th grade in August and had to drink a morning milkshake, eat a supervised morning snack at school, and drink an afternoon shake (monitored) at school.  Lunch was very loosely monitored.  Blind weights at fairly regular pediatric visits (along with orthostatic testing).  Went from Below the First Percentile for BMI (where she had been nearly her entire childhood) to I think, 16th Percentile BMI — roughly 30 pounds on her. 
 
December-ish we started noting obvious social miscues with friends and anxiety increasing (had seemed to decrease in first 7-8 months of refeeding as weight had gone on).  She disclosed a panic attack she suppressed in math class, in February or March and I called therapist who has seen her on and off since first grade or so … had to wait six-seven weeks to get in, but all was pretty stable other than some friendship issues she did not want to address anyway (she should have though…). 
 
As we were waiting for the therapy appt, d got several illnesses all in a row and multiple rounds of antibiotic and even a night in the hospital which was highly stressful (hates needles; the sodium whatever hydration drip hurt her a lot; did not eat hospital food; little sleep; etc).  Then after legitimately missed school days had stacked up, she had school refusal and then full on panic attacks or perhaps whatever is like that but lasts for hours.  Then a stutter that was nearly debilitating in terms of she was unable to communicate meaningfully (not a subtle stammer).  All of this since April 8 when spent the night in hospital, and more intensely since April 30, when the stutter started out of the blue. 
 
Has been taking hydroxyzine for a week or so pending a prescription for Prozac being made after the right doctor reviews the history (finally done today) and now the parents need to agree to give the Prozac and it is NOT an easy decision at all .. she is certainly suffering and I certainly want the to abate and position her to make better use the tools being offered in weekly therapy, but I admit terror at the idea of inducing side effects.  The hydroxyzine does not seem to be lessening the anxiety but does perhaps help her sleep less restlessly.  I do not perceive that it has any effect on her appetite. 
 
Oddly … at about the time the stuttering started (April 30 for sure for the stutter, less precise on the appetite), her appetite has at least doubled.  She is even saying how she is starving and then eats and then is starving again a short time later.  For example, today she ate 1/2 of a full size frozen pizza, then also ate a bunch of watermelon.  Then asked for more watermelon but I said we were out, so she asked for another piece of pizza.  I got her one and said she could have a piece of bundt cake if she’d rather, and she said “both” and ate both.  
 
Later for dinner she had seconds and commented she is still hungry and had a cupcake … ate the whole thing she was supposed to have split with her sister.  Then said still hungry and grabbed a granola bar off the counter but then saw dad was making a pizza and said she’d have that instead so she could take the granola bar to school tomorrow because she keeps running out of snacks.
 
She verbalized that she does not understand all the hunger and does not like how it is so fast that she is suddenly starving and then feels bloated after she eats so much.  
 
I do NOT think the anxiety is a result of having eaten more. I do not know if there is some sort of connection, however, between what could cause this sort of panic/sky-high anxiety (not surrounding food and her anxieties in the past have also not seemed to relate to food) and is there any tie-in with the appetite?  Is this what bingeing looks like??  I was hoping to just roll with it and hope the somehow she was finally gaining intuition into how much to eat; or that puberty changed up something that allowed her to have better hunger/satiety cues; or ….. no clue.
 
Anyone have any ideas on if the sky-high anxiety (they are actually looking at ruling out some somatic type disorders … this is certainly beyond GAD) and the increased appetite are related???
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. FWIW ED-D is a fraternal twin and we have no other kids.
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tina72
You describe she had several illnesses before that started (with antibiotics). Was she tested what kind of bacteria it is before they gave the antibiotics?
Was it anything that could have started PANS/PANDAS? Streptokoks or borelia involved?
The sudden outburst gave me that idea. And the stutter as PANS goes with tics a lot.
Keep feeding. There is light at the end of the tunnel.
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Ellesmum
tina72 wrote:
You describe she had several illnesses before that started with antibiotics. Was she tested what kind of bacteria it is before they gave the antibiotics?
Was it anything that could have started PANS/PANDAS? Streptokoks or borelia involved?
The sudden outburst gave me that idea. And the stutter as PANS goes with tics a lot.


Tina makes an interesting and excellent point here, it’s something our doctors know little about from what I understand, I think though could be wrong that the behaviour would be 24/7 thought and it doesn’t sound like your d is as she sounds quite lucid. 

The eating wouldn’t worry me so much unless there’s purging, my d has had several periods of extreme hunger and the amount she can is is astonishing, I mean pints of ice cream, plus burgers, plus milkshakes, plus chocolate, plus cake etc.  She has been extra anxious at these times for sure, I reassured her it’s perfectly normal. 
Ellesmum
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atdt31_US
hmmm.. Pans/Pandas.... had not considered that.  In February/March timeframe she had a cold that was ultimately diagnosed as a sinus infection.  No cultures done.  Took ten day course of Amoxicillan and we thought it was cleared but then sister came home with a fever and cold which whole house got so when ED-d's symptoms returned a day or so after ending that first round of abx we thought it was sisters' new illness.  Then it persisted and she convinced us to go back to dr, who said seems like new illness.  Then it kept on and pushing on face, etc, evoked pain, so back we went, and they gave us another antibiotic. I neglected to ask what it was, because in the past when Ed-d has needed two rounds (which was often with strep until four or so years ago) the second round was always Augmentin, so I assumed that was what was being prescribed.  But when I got it from the pharmacy I found out it was Cefdinir, which was one I had never heard of .. after confirming it was not a sulfa, I gave it to her.  After the second dose was her major panic attack or whatever, that lasted almost three hours and during which she was not remotely our child .... complained of stabbing pain in eyes; needles in skin on cheeks; fire on skin on legs; stabbing headache; hyperventilation; not letting us hug her; fetal position; wild, fear-filled eyes; claimed loss of proper use of one hand .. and I am sure I am forgetting some of those three hours.  We took her back to dr next day to see if anxiety or medication side effects.  Dr. said anxiety.  But switched us to Augmentin at my request and sinus infection is gone.  Lots of the anxiety still persists but nothing like that night.  But I think it is likely “just” anxiety and not something like pans. 
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. FWIW ED-D is a fraternal twin and we have no other kids.
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tina72
No antibiotics without cultures done if possible. The risk of resistance is very high. Her sisters infection could also have been a virus if whole house got it, I do not understand that docs give antibiotics for that without any testing...that is really dangerous. We have a lot of antibiotic resistance bacteria in Germany because of giving too much antibiotics in past and that causes big problems here now with multiresistant bacterias.

I just googled the antibiotic she was given (Cefdinir which is also called Omnicef). In Germany panic attacs and anxity are documented as side effets.
I also found some information in English:
https://www.askapatient.com/viewrating.asp?drug=50739&name=OMNICEF
http://patientsville.com/cefdinir/panic-reaction.htm
But I cannot tell you if that are relyable ressources. Please check that.

If there was a strep infection I would check Pans as well. Just to be able to exclude it.
Keep feeding. There is light at the end of the tunnel.
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scaredmom
Hi just some info re PANDAS it usually presents soon after A strep infection and can present as AN.
https://www.ncbi.nlm.nih.gov/pubmed/20148396
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340640/

Your d, atdt31_US had ARFID diagnosis, as I recall. PANDAS do present with OCD like symptoms too. Neuropsychiatric issues.  Just wish to be clear. And of course discuss all your concerns with your team.
They know her best.

Also for side effects of meds; I would suggest looking up the product monographs that are specific to the drug in question .

https://reference.medscape.com/drug/omnicef-cefdinir-342502#0
https://www.rxlist.com/omnicef-side-effects-drug-center.htm#consumer

I am aware you have a medical team in place, I hope they can come up with some ideas for your specific situation. It does sound challenging. Sorry I have no advice. Just hoping things get better soon. 

All the best.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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tina72
Hi atdt31, how is your d?
I am interested what you found out about the antibiotic. I did some research here and found out that it is not allowed to sell it in Germany as it did not get a drug approval here due to safety risks.
Keep feeding. There is light at the end of the tunnel.
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deenl
You sound just like my husband, Tina ÃƒÂ°Ã…¸Ëœâ€ž He is very cautious about medication and really does his research. As I tell him, all medication has a variety of benefits and risks as does NOT taking medication. Two members of our family have a condition that improves with medication but there are long term risks. Initially, he felt that this indicated that we should not take them. He incorrectly assumed that not taking the medication was a neutral stance. Until I told him about all the research that showed that we had a greater chance of an early death without the meds. So now we happily take the meds, have an improved quality of life and keep a sensible eye on indicators of possible LT issues. Should they occur then of course we would reassess the benefit/risk profile.

I know that before this wave of ED difficulty crossed our path, I was waaayyy too cautious about medication. I feel that I have a much more balanced view and now accept the benefits we gain with medication (sometimes with a short trial to assess benefits) more readily and keep the risks in perspective while doing everything to minimise them. I find it fascinating to see how my viewpoint has changed now that I have experienced the need to take more medications and the corressponding improvements to life. 

I, too, am really interested to hear how atdt31 is getting on. I hope so much that the benefits of medication have really been worthwhile in this case.

Warm wishes,
D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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tina72
I am normally not like that, deenl, I trust in medication a lot but we had recently some very serious cases with fluorchinolone antibiotics here and there was a red hand letter to avoid that docs prescribe them any longer and that was totally ignored by some docs with very severe outcome. A neighbor of us is in a wheelchair now because of that at age 33. The antibiotic atdt31s d was prescribed is non of that type but seems to be a possible reason for her behaviour because of the side effects that have been documented. I did not know up to a month ago that antibiotics can have that severe psychological and physiological side-effects to be honest.
Keep feeding. There is light at the end of the tunnel.
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atdt31_US
How are we?  Thanks for asking... the answer is, It Depends On The Moment.   I find the anxiety part of this to be harder than the eating part.  The eating part I understand what to do with, even if I don't know "why" it has been so hard for her to intuitively eat, her entire life.  The anxiety part is much harder because I don't know what it is (they are looking at Conversion Disorder; Factitious Disorder; GAD; Panic Disorder) and I don't know what to do about it and I don't know if it is part and parcel of the eating or if it is coincidental to the eating.  

If I just look at eating, we are doing well.  She basically skipped her normal routine from April 21 forward, and for much of March her attendance was way way down due to illnesses.  That means she missed out on monitored morning and afternoon snacks at the nurse's office for two months or so, which totally 500ish calories per day.  She has nonetheless continued to gain during those two months and is currently 93 pounds (42 kg) (32% weight for age) and 62.5 inches (158.75 cm) (58% height for age) for a bmi of 16.7 (20%).  Her numbers a year ago (3-4 months into this “re-feeding” effort) were:
59.5 inches (46% height for age)
69.5 pounds (5% weight for age)
13.7 bmi (1%)
 
So eating-wise she is doing great but it will be dicey to see if she can keep it up over the Summer Break, which starts today … she will be home alone with her twin and the two are supposed to feed themselves.  I will still wake up Ed d for a morning shake (450-500 calories) but snacks and lunch will be up to her (I will have food around she likes, and will pre-plate if she desires…).  Obviously we will be doing more frequent weight checks and may end up needing to hire someone (that did not work last year) or bring ED d to a parent’s work place (seems a bit harsh to steal her entire summer).  
 
Anxiety/Panic stuff is still declaring itself.  Every day, or even half day is different.  The stutter is basically gone, but reappeared last night for no apparent reason.  The panic is down but not totally gone.  The absent stares have not been seen for a week or so.  I can’t figure out if the anxiety is:
 
1. Totally its own thing that needs meds and therapy;
2.  Is the result (partially) of a lifetime of too much pressure around meals; too many doctor appointments and way too many invasive and lengthy procedures such that she has developed almost a Munchausen type need for medical attention.  I am willing to say some of it seems like that.  Other stuff, however, is borne out by objective tests so it is very hard to know what to have medically investigated and when to “ignore it” or otherwise distract her and wait for that symptom to go away because it got no attention.  
3.  Is it PANDAS (has been on a list of potentials for some time, but I’ve never been brave enough to mention it to her current providers).  She fits some of it, especially to the extent she could have gotten PANDAS years ago and it flares with small illnesses.  I have not fully researched it but at one point we did a roundtable type discussion with a retired doctor and a psychiatrist my husband and I work with to see if two people who care about our family and have decades of experience would see something if they heard the whole history all at once.  The listened, and the retired doctors’ first thought was PANDAS and his second thought was to go to Mayo.  Of course, as is her way, she seemed to right the ship and we were “fine” for a few months so we just carried on.  Now we are not fine again, but no closer to what is the root of some of the issues.
 
As to medication, I am not hardline anti-medication.  BUT I have seen first hand how some can do major damage, very quickly.  The antibiotic Tina mentioned, Fluoroquinolones, caused a severe adverse effect in me in about 2013 …. I still have peripheral neuropathy in my legs from it.  It hit me with sky-high anxiety; wildly elevated blood pressure and pulse in the middle of the night; burning sensation in joints; worst headache of my life; leg muscle fasciculations you could see if you looked at my legs.  Of course, the prescribing dr said none of that was from the drug.  A few years later, the FDA added a Black Box warning on that drug family with exactly the warnings to central, peripheral, and autonomic nervous systems I described.  It was very real and luckily mine abated within about 5 weeks to where I have very mild symptoms remaining.  
 
So I do not jump into meds lightly.  But I do take a statin (even though I was allergic to the first two I tried).  I do take antibiotics when needed but I am very careful about which ones.  I give my kids antibiotics and laxatives and other meds when it seems like it is worth the risk.  
 
I do wish I had not given the Cefdinir, but only because I had never heard of it and I knew she had success with Augmentin in the past … but I chickened out to second guess, and now I will forever wonder if that drug, which seems to be temporally related to this spike in anxiety and panic, is in some way related or if it is coincidence.  Or if the illness requiring the antibiotic spiked a PANDAS flare.  Or if the illness requiring the antibiotic resulted in negative energy balance and that caused the spike and time and food are the right medicines. Or does she need a psych med to get to where she can function better and go to school, make and keep friends, not panic if a tornado warning goes off, etc.  
 
Psych meds scare me for sure.  Mostly the idea of how they are so hard to come off.  Also how the inserts say to watch for things and if you see certain things, to contact your healthcare provider immediately … but those things I am to watch for are so many of the things we already see.  Her anxiety can go from zero to 100 now, with nothing overtly obvious causing it … so if I give the drug and it goes to 100, do I tell someone?  
 
We did start Prozac Thursday May 16.  Gave five doses total and then quit … because by Saturday, she was “normal.”  Obviously the drug could not be credited for that. …. was it school not a threat because a weekend; was it placebo to her; was it she just learned how to ride a bike and was proud and thrilled to be able to get some independence to go places she could otherwise not go; was it more time had passed from the illnesses and nutrition had been good; was it because much of the problems were factitious to begin with and she was not acting them out for some reason now …. I don’t know, but since she is so up and down, and since school is now out for three months, I do not see how starting Prozac now will give us any info … 
So we paused it to see how she does now for the beginning of summer and will reassess it in the next month so if we are not seeing therapy working, we can potentially start the Prozac so it is at therapeutic levels by the time school starts in mid-august. 
 
My reservations go beyond that, however.  We finally started this re-feeding effort last March or so because I just could not sit back and wait, like advised by the doctors, to see if puberty was timely and if she’d turn a corner by herself, because her bone density was so low I feared if we did not act now we would forever lose a window to build the bones.  Also she needs a surgery that will trench through her jaw and the oral surgeon thought two years of good nutrition would make that less traumatic to the jaw bone and potentially be better than doing the surgery last year.  Research seems pretty clear that SSRI’s reduce bone density.  Also, she had the genetic testing done, and SSRI’s came back as not being the best option for her (might not act in her as expected, so might need more, might need less, might have adverse effects).  Those two considerations together, coupled with the variables discussed above about how fluid she is and how it is hard to know when things are changing or not, made me pause the Prozac.  
 
So ….. we are in watch and wait mode on anxiety, with weekly therapy sessions.  We are cautiously optimistic that she can eat enough on her own to maintain and gain during the Summer.  And we are terrified that 8th Grade will pick up where 7th Grade left off, with school refusal, homework refusal, and intentional social isolation.  
 
I need to decide if we want to get input from new providers, or if that just muddies the field too much.  Potential providers could be:  
*. pediatric neurologist (she developed tics last June for the first time, which came within a week of 7th Grade vaccinations and were pretty severe for a short time and have all-but disappeared; coupled with this new stuff, I am not sure if that is an appropriate provider-type to visit… when we went to one (since retired I think) last June for the brand new tics, he asked what meds she was on and I said laxatives and nothing else but her then-pediatrician wanted SSRI’s and the neurologist quickly shook his head “no” and said I’m glad you did not do that.  That was when we were pending the genetic testing, I think, and given the tic situation we did not pursue that conversation more, but it sticks in my head when I think of starting an SSRI now).
 
* Different Adolescent Psychiatrist who might look at stuff other than “anxiety = SSRI” which is what the current provider seemed to do … I have no reason to think he considered stuff like bone density or her history of odd complaints that have been shown incorrect (some eye related things that seem to have likely been played up by her). 
 
Sorry for the book …. I sometimes use this place like a journal for myself to be able to look back on ...
 
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. FWIW ED-D is a fraternal twin and we have no other kids.
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tina72
I am glad to hear that she is a bit better and the anxiety is not there all the time on that high level.
No matter what did cause it, try to stay calm when she freaks out and try to find out what scares her and wether you can work on that fears like on fear food. My d was afraid of so many things, partly before ED moved in, partly increased by ED. We are working on that for 2 years now by slightly increasing exposition and it works very well. She is doing things now I never thought she could do a year ago (for example going to a big city by public transport which scared her a lot).

"And we are terrified that 8th Grade will pick up where 7th Grade left off, with school refusal, homework refusal, and intentional social isolation."
I know I ask that a lot here and I do not remember if I have already asked YOU but was she tested for high intelligence/giftedness? A girl in my ds class had some symptoms and she was gifted and when she switched to a higher class all that was solved...
Keep feeding. There is light at the end of the tunnel.
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atdt31_US
So you guys know a lot of stuff and I am going to see if any of you have thoughts on anxiety that looks like this:

Thursday was the last day of school.  So school stress officially zero until August.  Thursday she had a therapy appointment so in fact she did not even go to school Thursday, which was our plan because basically all they do is get yearbooks signed by the other kids and she has avoided kid contact for over month and it would have been torture.  That morning she awoke with mild panic type demeanor (no clue why), but took her morning shake and hydroxyzine and we set out on a bike ride not much after that and the combination seemed to snap her out of it.  So .... at therapy she was a chatterbox.  Therapist was thrilled, said in all the years worth of appointments, this was the most illuminating.  We had biked to therapist and ED d basically had a great morning.  Came home and had big lunch and vegged until NON-Ed Twin came home from actually having gone to school. 

Twin had plans with a gaggle of friends early evening, so I drove her there, leaving ED d home alone for a brief time.  I got home and dad was now also home.  ED d did what she wanted, which was had dinner in the basement and vegged and watched YouTube and played Xbox.  First day of summer, so she was allowed to do exactly that.  Ate well.  Then about 8:00ish (I am guessing at the timing) she came upstairs and was panicky.  Not full-on like fetal position (which we have seen in the last 5 weeks) but breathing shallow and fast; shaking out her hands; frantic in the eyes; stutter was back.... she said she did not know why. There was no secondary gain I could figure out.  Gave her a hydroxyzine (fast acting anti-anxiety pill we were prescribed when this new panic business started) and rode it out til bedtime.  

Friday morning Dad and I had a regular work day.  By design I woke her up about 7:30 to drink her morning shake so I could get to work.  She opted to have it in her bed and drank it fine for me. Was very very hard to awaken but no "panic" I noted when finally sat up for shake.  I went to work.  Dad checked not them at lunch and took them meal of choice and I believe watched her eat a decent portion.  She stayed home all day and pretended like she was cleaning her room and watched TV.  When I got home from work she was fine and did her own thing and also hung out with us for awhile (Twin, again, had plans out of the house).  Came in and said tired and wanted to go to bed earlier than I would have required bc summer, but later than a normal school night.  She did not take hydroxyzine at bedtime whereas she was doing that for the last week or so to ward off anxiety about school the next day.   

Was up a lot last night and had some anxiety unexpressed verbally but I can now see it in her eyes and how she holds her hands/arms and wanted the cat, etc.  She fell asleep, finally, soundly, well after midnight.  I let her sleep in rather than keep our plan of early bike ride.  She slept til 11:00 and who knows how long she would have .. I finally woke her and she was very very difficult to awaken.  Woke up panicked. Muttering, even when awake and sitting up.  I already forget, but was like "we have to go". "we have to go". and then "I don't understand."  Finally I think maybe I figured out she had been dreaming and I interrupted it and she as not separating the two ... it was as though she was mid-bike-ride in the dream and then suddenly in her bed?  She did not make much sense, and was clearly not herself ... stutter was back, eyes frantic, hands oddly clutched, etc.  

She recognized it to, and powered through and came downstairs and grabbed a Rice Krispie treat that was left over from yesterday and ate it (zero prompting) and drank her morning shake (took prompting but just time, not resistance really).  Waited around for Twin to get ready for bike ride and was still just not right.  Said dizzy.  Still talking in either stutter or this very slow speech she does to avoid stutter.  Still frantic eyes.  She was confused by it ... wanted to change scenery and see if bike ride would snap her out of it.  

The three of us finally biked and went furtherest ever (biking is brand new to the twins even though they are 13 -- never had an interest but I forced it so they can get around some this summer while mom and dad are at work).  Biked about ten miles to check out the path to a friends house.  ED d was not herself, but not dizzy and hung in there, and the biking did seem to help somewhat with the anxiety coursing through her... but she got a bad headache at some point and did make it home, but I thought a few times we might have to call dad to come with the car. 

Got home and she was pleasant and although we did not discuss it, it seemed she physically felt the anxiety less. Eyes normal.  No stutter.  We were tired, so Twin and I agreed to watch a youtube video she wanted to show us.  Dad went and go Subway sandwiches upon request (actually ED d wanted something I made, but Twin wanted Subway and ED d, very flexibly, said that would be ok). Ate whole sandwich (6") and also 1/2 apple with 60 grams peanut butter/nutella dip (nearly 400 calories just of dip).  All good. 

Now she is downstairs acting like she is doing laundry but my guess is she is on xbox.  

Anyway, it seems like this anxiety is out of the blue and that it is quite physically experienced by her ... not like me with racing thoughts sometime that don't let me get a good night of sleep .. you can see this just by looking at her.  She does not seem to understand what causes it on days like today and last Thursday when there is no known "reason."  When this all started in April, sometimes it was clear there was a particular trigger (usually school or homework) .... that was 100 times worse than this (fetal position, etc) but seemingly of the same animal .. but those bouts I understood on some level since there was an identifiable, even if irrational, trigger. 

I am all ears to anyone with any pro tips on anxiety, and whether you do or don't see this as clearly ED related in any way. 

The ONLY potential ED relationship I can see is if we are not putting enough in, even though weight is still tracking upward.  Mid-puberty (still no period ever).  New activity, biking, although short jaunts to learn to stay upright until today.  Slept in so lots of hours without intake from 10:00 pm to 11;00 am today (but certainly not a first for that sort of span without food).  

Here are her recent growth charts in case they help:

Height/Weight graph and chart:

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Editing to add this note to myself:  confused some of Thursday evening with Friday evening.  If giving to healthcare provider, use timeline in Pages.  To forum users, I don't think the flubbed timeline will change anything much for you to help see if you recognize this as normal looking anxiety.
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. FWIW ED-D is a fraternal twin and we have no other kids.
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Mamaroo
I'm sorry you have to deal with heightened anxiety as well now. Here are some of my thoughts. When we refed I avoided all so called hyper palatable food as recommended by Julie O'Toole's book "Give food a change". The reason being that hyper palatable foods can cause a binge which could result in an increase in anxiety and further restriction. So I didn't give her sweets, ice cream, chips or take away food. I also avoided biscuits and store bought pasties such as sausage rolls and muffins. However I did made my own snacks, pizzas and hamburgers etc. Here is a link to Julie's blog: 
https://www.kartiniclinic.com/blog/post/why-we-limit-hyper-palatable-foods-for-one-year/

Also sugar and refined flour foods can wreak havoc with emotions. I was a very emotional teenager, and was given the advice to avoid sweets, biscuits and other mood lowering foods. Instead I ate whole meal foods and increased my fibre and diary intake. After a couple of weeks I felt like a new person.

In addition to switching to whole meal foods, I would add more fats into her diet, such as whole fat diary products and nuts.

I hope things would get better soon. Sending you lots of hugs 🤗🤗🤗🤗
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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Tali97
One or two thoughts for you.
My son finds that the transition from school to no school does cause anxiety. It is the whole structure and exams to free time very disconcerting for him. He also finds that exercise does help reduce his anxiety at those times. So I would commend you on instituting bike riding it will probably help.

He also finds that anti-anxiety medications make him sleep late and be a bit spacy the next day if he has taken it when he was very stressed. 
18 year old boy (Gluten Free/Dairy Free 2005)
 IP - March/April 2014.  ARFID.
 2015 - Gastroparisis
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Foodsupport_AUS
I don't think it is clear this is ED related at all. It certainly sounds as though your D is have panic/anxiety attacks and as you mention some seem to be with and others without triggers. 

I note there is a very small blip in her weight trajectory at present but looking at her charts you have done a fabulous job over the last year or so of getting her into what is likely to be for her healthy ranges. I guess that raises the question as to whether this is plain old panic attacks/anxiety or if there is some other physical cause eg. response to medication or something such as PANDAS. Could she even be anxious about being left at home over the holidays?

You are there on the ground and know your D the best. 
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.
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tina72
Seems for me not to be food related. More than a brain issue. Very scary and very unusual. I personally would take her to a MRT scan to check the brain. It is concerning that it is so hard to wake her up, and that "shaking out her hands; frantic in the eyes; stutter was back". It seems a bit like a seizure to me. I would take her to a neurologist. Just to exclude it is anything serious.
Keep feeding. There is light at the end of the tunnel.
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scaredmom
As I read your concerns I would suggest a proper follow  up with your medical team. Sounds like anxiety to me making the stutter worse at times too. They seem to self resolve without neurological signs or sequelae. But as we are not doctors, I am leery of making a call here to even speculate. 
She would need a proper history and physical exam by your team that knows her the best and then they can figure out what tests if needed ,are performed.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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atdt31_US
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.  

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. FWIW ED-D is a fraternal twin and we have no other kids.
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tina72
So great to hear that update, thanks a lot! What a progress! You must be so happy! I am doing the happy dance here for your family!
Keep feeding. There is light at the end of the tunnel.
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sk8r31
Thanks so much for your update!  Truly great to have a dx of PANS & a treatment protocol to follow.  But best of all, how your dear d is moving forward into a strong period of health.  Keep going, and all the best for relatively smooth sailing ahead!
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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