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Need help with daughter’s Orthostatic hypotension

My daughter was diagnosed with Orthostatic hypotension. She is in the middle of a growth spurt and is 13 years old. She gets dizzy upon standing. She is drinking 3 liters of fluid and taking 1 tablet of salt per day, but symptoms still persist. I’m getting worried. Anyone have experience with a similar situation?
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Has she had a tilt?  Any other symptoms?
Helpful - 0
No tilt test so far.  Her blood pressure reading recently was-

after lying down 5 min-97/53, heartrate 61
after standing 1 min-99/60, heartrate 79
after standing 3 min-100/54, heartrate 76

Any thoughts? Thanks!
Tbh that's a pretty normal response... her diastolic is 53 bc her tpr is low at her age( which is a good thing)... she responds pretty appropriately.

Does she have other symptoms?
The only other symptom, which she has had since she was a toddler, is that she can't tolderat the heat.  The doc said she has postural orthostatic hypotension, but he nurse through around the term Postural Orthostatic Tracycardia-POTS.  By lookin at her blood pressure and heart rate, can you tell which it may be?  I cannot figure it out.  
Oh, I should've reread and used spellcheck.  Sorry!
No worries.

They are both a type of dysautonomia.

Orthostatic hypotension is when your bp significantly drops upon standing.

POTS is postural orthostatic tachycardia syndrome.  It's when your heart rate significantly increases on being upright.

Based on her readings I would not categorize her as either.

Since she has had heat intolerance she she was a child has she been checked for organelle dysfunction?
No, she has not been checked for organelle dysfuntion.
If your on the east coast I suggest seeing Dr. Heather Lau at NYU.
973741 tn?1342342773
One of my son's who was also 13 last summer had orthostatic hypotension.  It was a bit disconcerting because some of his falls were pretty dramatic.  Notably, he fell into our quartz counter top hitting his cheek bone and then was out cold on the floor for a second.  Black eye as a result.  Scared the poop out of me!  For him, this happened most earlier in the day when he would not have eaten or drank enough.  Especially bad if he slept in which he did a lot last summer (this year sports make that difficult and we're not having the issue as much because he gets up and eats).  So, the doctor told him to get up and eat first thing in the am.  He does this.  And we work on his overall daily hydration.  He plays soccer and has one to two long practices a day all week long and runs in the mornings for conditioning.  So, now he has a water bottle with him at all times to try to stay on top of it.  

Anyway, is there any pattern to when she is experiencing symptoms?  My doctor led me to believe this was not uncommon for kids of this age.  And suggested too that he stay aware and get up slowly from seated or laying positions.  
Helpful - 0
No other symptoms (just dizziness upon standing from a lying down position), but can't tolerate the heat too much.  She is going through a growth spurt right now. The doc said she has postural orthostatic hypotension, but the nurse through around the term Postural Orthostatic Tracycardia-POTS.  By looking at her blood pressure and heart rate, can you tell which it may be?  I cannot figure it out

Here are the results-
after lying down 5 min-97/53, heartrate 61
after standing 1 min-99/60, heartrate 79
after standing 3 min-100/54, heartrate 76

I am getting so worried about her.  Thanks.

I see that this is from 2 years ago, are there any updates? I will respond anyway, just in case it helps someone.

PoTS is the same thing as Postural Orthostatic Tachychardia Syndrome, the Po for postural, T for Tachychardia and S for Syndrome. I have been researching, because I think I have this, too.

Heat brings on symptoms, yes, so try to avoid overheating. I am going through similar things, and I give myself 10-15 seconds of wait time between postural changes, especially laying down to standing. Since doing that, my dizzy spells have gone from 10-15 a day to 2-3 a day, and I haven't had ANY confused/disoriented spells that I used to have one every other day or so.
Oddly enough, as exertion and activity brings on symptoms, being overly sedentary makes it worse, too.

I am Dr ordered to not cook, no driving, no climbing ladders, no operating any machinery or power tools, etc, no activity of any sort that could be dangerous if I were to lose consciousness again.

To be perfectly honest those particular bp and heartrate variations are not bad at all. The first number in systolic can swing up to 20 points and be considered normal, and the lower number diastolic can change 10 points and be normal. That is not necessarily as far as what your daughter can experience in bp swings, obviously or she wouldn't have that diagnosis. My main suggestion is to help her determine what makes it better and what makes it worse.

My bp swings from 117/70, pulse 70 at rest to as high as 155/98, pulse 140 with postural change and standing 5 minutes. Hoping to get a diagnosis soon.
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