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

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strawdog
Hi - our d had some abnormal health stats when checked this week. Her pulse rate rose significantly on standing compared to lying down and she is now being referred to the hospital for further checks. This is her 3 week and it hasn't been apparent before. Does anyone have any experience of this?
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scaredmom
It is likely she has orthostatic hypotension. The BP drops while standing and the HR goes up in compensation. This is a sign of cardiac instability in those with AN.
This is can be a marker of severity of her illness.
Here are a few references.


https://eatingdisordersreview.com/orthostatic-hypotension-and-tachycardia-in-adolescent-patients-with-anorexia-nervosa-a-marker-of-illness-severity/



https://www.jahonline.org/article/S1054-139X(02)00533-5/pdf

I am glad they took that seriously and have sent her to the hospital. I hope it goes well.

XXX
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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scaredmom
strawdog,
I hope she is being assessed today.
I don't wish to alarm you, but this is very important.
XXX
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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graceforthemoment
How much did it rise?  Did they give you a number or just say "significant"
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Ellesmum
It’s good she’s being seen quickly. Mine was seen in A&E a while back, they sent her ECG results and more to the cardiac specialists at GOSH. 
It was a wake up call for both of us, she was ok but it really spurred me into full action to push for wellness.  

I feel for you, I know it’s shocking to hear potential issues.
Ellesmum
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mimi321
Hope everything is going okay! We did have an issue with heart rate at one point, but not bp as far as I know. It is scary for sure.
Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think. - A. A. Milne
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tina72
This is really concerning, she should be seen by a child cardiologist soon. Do not postpone anything because it is weekend, bring her to A&E if necessary.
Keep feeding. There is light at the end of the tunnel.
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strawdog
How much did it rise?  Did they give you a number or just say "significant"


It was 25 but she doesn't have dizzy spells ever, doesn't feel feint at all. She's put on 4 pounds in the last 2 weeks so I would expect this to have shown up from the start of treatment? Other conditions that cause this form what I've read are Diabetes but I guess they tested for things like that when she had her initial blood test. Anyway she is going to the specialist at the local hospital next Wednesday. To say I'm sick with worry is an understatement ðŸ˜”
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tina72
Can you check her blood pressure regularly over the weekend and take her to A&E again if it is such a big difference between lying and standing?
I do not imagine that has anything to do with putting 4 pounds on, that is normally a sign for heart problems.
I can imagine that you are sick with worry, but it is good that they did orthostatic blood pressure control and now they can check her heart. Here in Germany we must teach the docs what is orthostatic blood pressure ;(.
I hope she will be better soon and it is just a false alarm.
That is why AN is really a serious disease, it can make a lot of damage on the body.
Keep feeding. There is light at the end of the tunnel.
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strawdog
Sorry I’ve got the slightly wrong. It’s her heart rate they’re worried about not blood pressure. The difference between lying and standing was 25 which is an amber warning on their scale.
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mimi321
When I was concerned about my D's heartrate I insisted she rest as much as possible and I routinely took her pulse a few times throughout the day (after resting for 2 minutes then also standing). I think below 50 is bpm is usually low enough to be admitted for closer monitoring. 
Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think. - A. A. Milne
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mimi321
Actually, this is the guideline I was given: less than 50 bpm during day (under age 18), less that 45 bpm during evening, a change greater than 35 bpm between resting and standing. Check after 5 mins of rest and 2 mins of standing. Any concerns, I would head to outpatients. 

IMG_5407.png 
Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think. - A. A. Milne
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tina72
strawdog wrote:
Sorry I’ve got the slightly wrong. It’s her heart rate they’re worried about not blood pressure. The difference between lying and standing was 25 which is an amber warning on their scale.


It was my mistake, you wrote pulse rate in your first post but I got it wrong. So check her pulse regularly and avoid any unnecessary movement. Bedtime. Did they tell you when to go to A&E? If not, call them and ask. Normally you should call the ambulance when she gets dizzy or breathes not normal. Wednesday is a few days. Keep us updated how you are doing.
I hope it is only due to stress at the appointment. That is possible.
Keep feeding. There is light at the end of the tunnel.
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strawdog
They said it needed following up but it wasn’t critical and she could still carry on as normal. She isn’t feeling dizzy at any point the last couple of days so that’s a good sign. We will monitor her very closely this weekend. She is still eating well and re nourishing. I will keep you all posted. It is comforting to have support of people on this forum. 
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Ronson
How is she doing Strawdog? 
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strawdog
Hi Ronson - she is OK. No problems over the weekend with her heart so we will wait and keep our fingers crossed on Wednesday
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tina72
That is great to hear, I also thought of you! Keep swimming and fill us in on Wednesday!
Keep feeding. There is light at the end of the tunnel.
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mrh74
My daughter's pulse always shot up when she stood and she did feel dizzy quite a lot of the time.  It was high on the sitting reading too so they thought it was partly anxiety.  They did regular ECGs but these were always ok so they didn't seem overly concerned.  They always said if she passed out or felt very breathless to go to A&E but we never had to do that.  Hope that helps a bit!  It is very distressing having to wait for an appointment to check it out, I remember it well and I'm thinking of you x
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strawdog
Thanks mrh74 that helps re-assure me a bit. She's not even getting dizzy spells so it's a bit odd really. Did your d have this from the begining? Out d was fine on the first 2 appointments - it was just last week that it was there and she'd put on 4 pounds in that time so the heart should be getting stronger and not weaker? The other cause they said was purging but we're 99.9% sure that's not happening as she is putting on weight plus she has a massive fear of being sick! 
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Ronson
Glad to hear she is doing ok and hope all goes well on Wednesday.  
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mrh74
strawdog wrote:
Thanks mrh74 that helps re-assure me a bit. She's not even getting dizzy spells so it's a bit odd really. Did your d have this from the begining? Out d was fine on the first 2 appointments - it was just last week that it was there and she'd put on 4 pounds in that time so the heart should be getting stronger and not weaker? The other cause they said was purging but we're 99.9% sure that's not happening as she is putting on weight plus she has a massive fear of being sick! 


Yes she had it from the beginning - it went up and down - she had a brief period when it went down but it shot up again for no apparent reason after she was weight restored.  In the end they stopped taking it and only started again when she lost weight.  They've stopped again now 🙂
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deenl
Hi strawdog,

Wishing you luck today.

Just mentioning it in case it is relevant for you - my son only told me about dizzy spells recently; three years later! This, in spite of the doctor asking him frequently. Deep down they know that admitting such a symptom would bring an increase in the intensity of treatment and they are scared. Scared to admit it and scared to eat. Stuck between a rock and a hard place.

Please ensure your daughter is kept warm, especially at night. We had a heart monitor at home and I actually saw my son's heartbeat go under 30 when he accidently got too cold. When he was on a heart monitor at night in the hospital it went off at least 30 times a night in spite of them reducing the sensitivity. It is scary stuff. The good news is that it looks like my son has escaped without any permanent heart damage. Food is the medicine.

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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strawdog
Thanks D. Hospital appointment is Wed pm UK time.  Took her resting pulse yesterday evening and it was 55 so low but not dangerously so. 30 must have been realy scary to see!
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tina72
We all cross fingers for tomorrow! Keep us updated when you find time!
Keep feeding. There is light at the end of the tunnel.
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strawdog
 Thanks Tina. A weigh in and a hospital appointment tommorow so as you can imagine there is a lot of tension with d tonight. Saying she can’t do this and she can’t see an end to it and a point to her life. Very upsetting for us to hear and lots of tears from Mum this eve. We try and tell her about all the stories on here of kids that do get better but she just said she doesn’t care as it doesn’t help her right now. Need to try and stay strong but it starting to get to us.
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