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Posts: 442
Reply with quote  #1 
So my d is the highest weight of her life, state is good, and gi symptoms continue to be terrible (not so much ed related, in my opinion - I think either coincidental or possibly the root of the ed symptoms).  Also the highest bmi she has ever been.  From birth to 12 years of age, she was almost always in the 12's for bmi.  In February 2018 I decided to try to beef her up in a new way and it has worked in terms of she is now about 15 bmi and finally actually on the growth chart.  When in the 12's, about three years ago, she got a baseline EKG and it was fine.  She has never lost weight it has more been a failure to gain to expected weights.

Then in February 2018 I realized eating was down (no weight loss, but stagnating or slowing rate of increase), d seemed "off" and "small" and gi symptoms were terrible.  So I took her to old pediatrician and specifically asked for orthostatic to be done (he did, and said fine, but I did not see the results and actually was not in the room when it was done).  I also asked for an EKG because d was the worst I had seen in a bit and I figured it would be a good time to see if there were any heart concerns and compare her bad state to the baseline from three years prior.  He said no to the EKG and signed off on her seventh grade physical form she can do PE and sports (she does not do sports, but he said she was fine to do them).

In April we went to an adolescent psychiatrist (real md) for an ED eval and also I just needed new eyes.  He said ARFID and helped us start to refeed and then, after some August orthostatic readings were provided to him (see below) he okayed her to do PE from a heart/health standpoint (but from an ED standpoint he asked us to keep her out -- but to conserve calories not out of fear of heart issues) (we have kept her out of PE this school year but she participated all last year).

In August 2018 we switched pediatricians and the new one does regular orthostatic testing (does lying, sitting, standing - I wish she did lying to standing, but still better than our old doctor).   

Here are the results I have available:

August 8:
lying 102/62; pulse 96
sitting 98/52; pulse 107
standing 100/56; 115

August 28:
lying 98/48; pulse 80
sitting 100/50; pulse 93
standing 98/50; pulse 100

October 9:
lying 100/54; pulse 68
sitting 98/56; pulse 88
standing 100/56; pulse 104

MY CONCERN IS the pulse on the October 9 testing.  I know some things will say an increase in pulse rate of greater than 20 is a "fail" on the pulse test.  I would be fine just monitoring, upping fluids, and keeping on with refeeding, and keeping her out of PE if we were not about to travel.  But given today's reading I am wanting to be sure we are okay to drive to the mountains (lots higher altitude than where we live) and hike.  Won't be big tough hikes, but more exercise than she is used to (pretty sedentary by choice and I don't encourage much during "refeeding") and I just want to be sure that won't be a problem, especially with the altitude.

I will call her pediatrician tomorrow and look like a crazy person to ask if we can go on a mountain vacation because she did not know of the plans.  When she showed me the orthostatic testing results today we were in the midst of a lengthy discussion about gi concerns and the numbers did not sink in well for me, so I did not ask about high altitude/travel.  But I thought I'd see if any of you smart people can offer some input as well.  Also I thought I'd travel with a little packet of info about d and maybe generically about ed and medical stability just in case we find ourselves seeking medical treatment on the road -- anyone have a packet they use in this way you want to share??

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.

Posts: 682
Reply with quote  #2 
i can see your concern about the 9 Oct results. When my d's orthostatic tests were done, the dr always waited a couple of minutes after d stood up to record the blood pressure and heart rate. If one records the blood pressure and heart rate just after standing up, it will be too high. It could also be that she was a bit dehydrated. That is what might have happened with your d yesterday. You can ask for a repeat orthostatic test or just ask d to lie down for a couple of minutes and then get her to stand up. If she is dizzy (or heaven forbid faints) then you know there is a problem, but otherwise, just check with the dr again. 
D became obsessed with exercise at age 9. 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. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.

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Posts: 5,360
Reply with quote  #3 
Sorry, I don't know how to evaluate those results.  

I wonder if you would be better off buying your own blood pressure cuff so you can monitor this on your own.  My guess is that you would do a better job following the instructions than whoever is currently tasked with this. xx


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

Posts: 1,071
Reply with quote  #4 
Hi atdt31,

Although I have no idea how to interpret these measurements, please remember that they are only a moment in time and your doctor will use it as just one piece of the picture when assessing your daughter's health. Your plan to get back in touch to double check and let them know your plans seems like a sensible course of action.

Hope they can put your concerns to rest.

Warm wishes,


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, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • 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. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.

Posts: 82
Reply with quote  #5 
I asked Uncle 1 (UK Paramedic) and he said those values, in isolation, aren't necessarily that useful and should be used to contribute to an overall clinical picture. So, things like whether she had any associated symptoms, whether the heart rate dropped back down and how quickly it did so, whether it was regular/irregular etc.

He also said many things could affect a reading (how long she was lying down beforehand, how quickly she stood, how long the dr waited before taking the measurement, how your d was feeling emotionally, the environment where the measurement was taken etc etc)

In terms of how higher altitudes affect heart rate, the resting heart rate will increase.

It's always a good idea to double check any concerns and I hope they were able to alleviate any fears for you.

Posts: 876
Reply with quote  #6 
Hi there, 
The way that these are done is very important as mentioned above- there is a correct way to do and incorrect way. I would suggest that you do it yourself as Torie suggests. And a few times at a time..maybe a couple times in a day for a few days to see if you see patterns in the day.
Deenl is right, in that it can vary even in the same day and hydration status ie before or after having fluids and how soon before or after she had those fluids. 
As Mamaroo suggested could you call the doctor too and discuss your concerns. It may help to reassure you.  
I like that you will take an information package while traveling. I would offer that you should have  some " national guidelines" to act as evidence if you need medical attention. That may make it easier for the medical professionals that you may encounter.

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