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

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Pointerpuppy
I haven't posted much this past year due to life being extremely crazy. It has been a little over a year since we started treatment in earnest (Nov 2018). We acquired a "team" with a counselor and dietitian. We've had ups and downs along the way. We "weight restored" about April/May of 2019. Since then a struggle to keep it on. H and I haven't been in total agreement on a lot of things which has hindered progress.

The last few months it feels like we've been "stuck". I've pushed for more weight but haven't gotten much support. We recently joined an IOP through our counselor. (Unfortunately everything is in the next state and we are 5 hours away. So it has been a little bit limiting). Our D has been to 2 sessions and then we weren't able to make it this week. So we'll go again next week for 2 more sessions continuing twice a week after.

With all that my D informed me last week that she is still having heart palpitations. They were bad in the beginning, got better and now she says they are getting worse again. So we have an appt to see someone about it tomorrow. What I'm wondering is what types of things do I need to ask them to check. I remember seeing a post quite awhile back saying the specific things to check out but can't find it and don't remember what they were.

Thanks so much for all the help y'all have been this past year. Couldn't have survived without it.
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Torie
Hi Pointerpuppy - Nice to hear from you, although sorry to hear about your concerns.  I think you will want them to test orthostatic blood pressure and pulse.  You can find the CDC instructions here:
https://www.cdc.gov/steadi/pdf/Measuring_Orthostatic_Blood_Pressure-print.pdf
xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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ValentinaGermania
The medical guidelines of AED can also be helpful:
https://www.aedweb.org/resources/publications/medical-care-standards
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
Sorry about how things are going. 

As well as checking orthostatics it would be appropriate to check things like electrocardiograph as well, and she may need a holter monitor for 24 hours to see how her heart rate changes over 24 hours. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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Enn
  • Postural BP AND heart rate 
  • alleviating and aggravating factors like exercise, standing, walking, sleeping going to the toilet, sweats, with her period, hot or cold flashes, anxiety driven or not, caffeine related or not. 
  • holter monitor ( heart beat monitor for 24 hrs, as Foodsupport notes) 
  • maybe Echocardiogram
  • TSH thyroid test, Hemoglobin( anemia can cause fast heart rate) 

Having that history beforehand can help a medical team determine what needs to be done. Palpitations just means that one can feel their heart beating. Knowing and measuring if it is a high > 100 or a slow heart beat < 60 is important to know. Also if there are symptoms of feeling faint or dizziness or shortness of breath or chest discomfort (not necessarily pain but a squeezing sensation), would be very helpful for the team to know and they should be asking that as well. 

 

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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Pointerpuppy
Thanks for the responses. We are still working through some of the things. The PA that we saw did hear and feel an abnormality.  She ordered blood work that came back "normal". EKG was normal. We had an echocardiogram done yesterday. Waiting for results on that. Scheduled for a holter monitor next week. 

D has been doing much better with eating the last couple of weeks. She has a gained just a bit more weight and I'm trying to encourage a little bit more. Finally starting to see a dim light at the end of the tunnel! Realizing that we still have a ways to go yet. 
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ValentinaGermania
Did they do a long term 24 hours EKG?
Keep feeding. There is light at the end of the tunnel.
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Enn
Did they do a long term 24 hours EKG?


A 24 hr EKG is called a holter monitor test. 
it measure every single heart beat in 24 hrs with an event recorder pushed when there are symptoms. I think that is what you meant? Pointerpuppy notes that one is booked for next week.
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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ValentinaGermania
Thanks, ENN, I did not know that name.
Keep feeding. There is light at the end of the tunnel.
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Enn
You are welcome @ValentinaGermania .
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
I so often see stuff about a low heart rate being a reason to admit.  Please be aware that a fast heart rate (tachycardia), which can present as palpitations, can also be an alarming sign, especially if the diastolic blood pressure is low.  I am not a doctor, and not trying to scare you. But just another factor to keep in mind as they assess ...
https://eatingdisordersreview.com/orthostatic-hypotension-and-tachycardia-in-adolescent-patients-with-anorexia-nervosa-a-marker-of-illness-severity/
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.
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