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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