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
Need a link to refeeding syndrome and what tests the provider should run and what heart signs are important.  Not sure if Ped that up to speed on EDs ..... thanks in advance if anyone has such a quick link. Taking her in for assessment of 8/10 headache; extreme fatigue; tachycardia at rest (sleeping hr of 116). 
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
mtkmbc4
https://www.medicalnewstoday.com/articles/322120.php

https://www.eatingdisorderhope.com/information/anorexia/refeeding-patients-with-anorexia-nervosa-what-does-research-show

https://www.uptodate.com/contents/anorexia-nervosa-in-adults-and-adolescents-the-refeeding-syndrome

The last link requires a subscription to read.

Labs commonly ordered are electrolytes (sodium, potassium, chloride, bicarbonate), kidney function (BUN and creatinine), glucose, magnesium, phosphorus and thiamine levels. 
Quote
Enn
Here is a medical protocol that may be useful.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/

With such a bad headache  and high heart rate I would consider taking her to the ER and  not to an outpatient appointment. 
That way they can do acute labs and ECG in the department.
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)
Quote
Enn
Another easy to read presentation with facts.
https://www.peng.org.uk/pdfs/presentations/2017/rhys-white.pdf
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)
Quote
sk8r31
I highly recommend downloading a copy of the AED Medical Care Guidelines.  It includes medical tests/evaluations that should be done.  In addition, there is a section on Refeeding Syndrome and how to evaluate for that.


It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
Quote
atdt31_US
Thanks, all of you, for your quick and helpful replies.  You were so fast to get those links I had fumbled around trying to find ... really appreciate it so much!  Took her to ped this afternoon and they think it is just that the sinus infection diagnosed March 28 did not clear after the first round of antibiotics.  They put the headache and fatigue on that.  I am hopeful they are correct ... she has been up and down over the last few days so although exceedingly fatigued and falling asleep multiple times a day, she also played four square with us yesterday and cleaned the windows inside and out.  So .... I am guardedly thinking we just need to limp through this prong of the illness and keep up the calories and wait for the antibiotics to kick in and then, maybe, for the first time in a month, we'll see our normal kid again.  Man, this last month has been ROUGH (for her too, obviously, but simply exhausting for her parents and even her sibling).  She has missed so much school it is hard to believe she can catch up before the year is out ... 

I will contact her ED specialist tomorrow (a psychiatrist, so also an MD well versed in EDs) and run it all by him to be sure he does not think labs and/or an EKG is necessary.  And of course I will watch her like a hawk tomorrow to be sure the pep is coming back ....

She got home from the doctor about 5:00 and went right to bed (after sleeping all day other than eating, which she did well on).  Woke her up for dinner about 6:30 ... she ate without prompts, took her new antibiotic, and asked if she could go to bed.  I told her yes but I'd wake her up for a snack before I go to bed and to take her Miralax and she said okay. I bet she is hard to rouse and grouchy, but hopefully I can get those things in her and stay on schedule.  
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
Enn
Thanks for the update and that she will be fine! 
Phew that is a relief and you have been through the ringer this past few weeks. 
Please take a breather for yourself and rest!
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)
Quote

        

WTadmin