Trying to find some answers for my teen daughter symptoms

[Caro10]

My  14 yo daughter has been unwell for months.  Persistent complaints of dizziness, nausea, stomach pain, diarrhoea and constipation, heartburn type pain, and headache.     She was diagnosed with very low Iron and received an iron infusion, so we hoped that would sort it out.   The symptoms all continued, stomach pain continued and gall stones were ruled out, however they did note her liver was slightly larger than normal.   All bloods were perfect, Dr. did all types of bloods and they were all perfect.   Her iron levels have also returned to normal.    She also noticed that the palms of her hands turn red,  however only the palms and she sometimes complains of her t-shirt hurting her stomach where it touches it.    Her GP is leaning towards anxiety and has referred her to a psychologist, my daughter is adamant it is not anxiety and is refusing to see the psychologist. 

The past few days, I have started taking her BP and H/R with a wrist cuff,    so far she is not compliant with the 10 minute standing test but this is what I have noted.  I am wondering if anyone here diagnosed with POTS has had symptoms like this.

Measurement 1,   Lying 97/53,  H/R 72,  Standing 1 minute 105/62, H/R 112

Measurement 2,   Woke up still in bed § 94/53 H/R 72,  Standing 1 minute 118/79. H/R 199

Measurement 3,   lying 86/51 H/R 69,   Standing 108/69 H/R 112

Measurement 4,  lying 97/53,  H/R 72,  Standing 108/76, H/R 112

I have measured three H/R of 199 now,  usually when she has gotten up from a sitting position.

Thank you for any input,  I really want to rule out any and all physical reasons for her symptoms, before we take her to a psychiatrist and potential start the route of anxiety medication.  

 

[Pistol]

I do not know what your poor daughter has but I can only suggest you NOT to go the anxiety route yet. That is usually the diagnosis of choice when they don't know what else to do, especially with teens.  Is it possible for you to see another Doctor? Does she have a pediatrician? My PCP did not know anything about POTS but never dismissed my symptoms. I also have a teenage daughter and know that they go through a lot of psychological changes at this age but the symptoms and findings in her case should be investigated. I wish you good luck - just keep fighting!!!!!!

[MomtoGiuliana]

Welcome to the forum.  So sorry your daughter is having such a hard time with no answers yet.

Here is general information about POTS that may be helpful if you have not seen it:

https://www.dinet.org/content/information-resources/pots/pots-an-overview-r95/

I would suggest considering getting input from a psychologist/psychiatrist.  They are experts at evaluating a patient to confirm if the patient has anxiety or not (frankly, unlike a GP).  It might help to rule that out definitively for her GP.  It took me months to get a diagnosis and my GP kept insisting I had severe anxiety, and this was getting in the way of finding answers.  I finally agreed to see a psychiatrist who after spending 30 min with me determined I did not have anxiety and did not need any medication for any psychiatric reason.  She reported back to my GP her assessment that I did not suffer from anxiety and probably had a physical condition that required diagnosis and treatment.

[Christy_D]

The same happened to my son and the psychologist agreed with us that it was not anxiety and was a physical problem.  Our psychologist did research and recommended seeing a cardiologist about POTS.  My son's main symptom is nausea, so I would have never thought about seeing a cardiologist.  While a cardiologist diagnosed my son, he has always been treated by a neurologist(they diagnose POTS as well).  

I will also say, the psychologist was helpful in giving my son mental tools on how to deal/live with his condition.

 

[MomtoGiuliana]

Good point Christy. After diagnosis I saw a psychologist w expertise in chronic disease.  He was very helpful.  He has expertise in biofeedback and we used that in addition to identifying coping strategies.

[Pistol]

That is true - I also was at some point evaluated by a neuro-psychologist and anxiety was ruled out. 

[Caro10]

Thank you for your responses !

Daughter is not open to see a psychologist or psychiatrist at all !  She is adamant it is not anxiety.  So I think that will be our final port of call, when we rule everything else out.  

I am finding out more and more about PoTS symptoms and another symptom she has is feeling really dizzy and sweating after her shower.   I hope I can find some concrete evidence for the GP to consider it as a possibility and refer us to a specialist.

 

 

[MomtoGiuliana]

My only thought is to suggest to your daughter that the psychologist could hopefully be an important ally, by relaying back to the GP that the patient does not have an anxiety disorder.  I definitely understand.  I was very resistant too.  I finally went to rule anxiety out.  Unfortunately sometimes doctors feel they have to consult with other professionals rather than patients to be comfortable with a diagnosis or lack thereof.

[Peter Charlton]

Indeed, my cardiologist decided all the symptoms I developed as soon as they put me on the Beta Blocker Bisoprolol, was due to "anxiety", he kindly informed my work and GP of his most illogical notion. The GPs loved this diagnosis, meant they could just laugh at my complaints and dismiss them.

The psychologist  was far from amused however when she met me and said no way do I have anxiety and so wrote to my GPs telling them they had better sort out my very real physical symptoms.  

[Christy_D]

My son's psychologist said she gets a lot of patients referred to her for anxiety because the doctor can't figure it out so it must be mental.  After the 2nd visit and getting all of my son's symptoms, some I didn't even know about because he thought it was normal for everyone, she did the leg work and research the doctor was unwilling to do.  It was validation from her that it was not a mental issue.  Tell your daughter it could be more ammunition to prove against the anxiety diagnosis.

[m@t]

Are you taking the HR readings from an automatic BP machine? If so next time it gives you a 199 reading also take her pulse manually and check that its reading accurately.

When you say she is non compliant with a 10 minute test do you mean she passes out or feels as though she is going to?

[yogini]

Electronic heart rate measurements can be wrong.  I agree that counting manually the pulse is more accurate.  For a POTS I would check her pulse and BP 10 or 15 minutes after standing and see if it is a sustained increase.   Does she feel much worse after being on her feet for a while?

[Always hoping]

Have any of her doctors done these orthostatic readings in their offices?  Make them see these readings themselves.  And tell your GP that you want her seen by an elecrophysciologist.  They should be able to determine or rule out any orthostic issues.  Good luck.

[JB246]

Please know you are not alone. 

My 18-y/o son has been sick for most of 3 years.  He had seen so many doctors and many said he needed psychotherapy as well, but he refused.  He was steadfast in the description of his symptoms and never wavered.  I also have another child with mental health issues, so the subject is not taboo in our house.  Despite being sick for so long, this one does not have any mental health issues and I did not seek out this appointment at all.

I finally pushed to request the autonomic tests and confirmed a POTS diagnosis last month.  Now that we are with the experts who fully understand this illness (Cardiology EP and Neurologist), there is no more talk of psychological issues, unless he feels he needs it.

My son doesn't talk much about how he feels because he has felt miserable for so long.  But after we finally had a diagnosis, he said "Well, at least now people will believe me".   We cannot underestimate the impact of trust in our children.  We need to support them and give them some control over this totally out-of-control scenario.  They lose so much with chronic illness: independence, friends, school progress, play, etc...   

If you're open to recommendations, please seek out a cardiology EP or a neurologist who has experience with dysautonomia/POTS.  Please know that some will say they have experience but it may be limited and they may still start walking down the "anxiety/depression" route.  When you finally get to the experts, they will understand and will perform the resting and then standing vitals that should support her physiological symptoms while standing.  When you get to the right team, you and your daughter will find some peace with a diagnosis and at least be on a forward moving path....one with many hills, valleys and winding turns, but at least moving forward.

 

[DizzyGirls]

JB246, welcome to the forum, and well said.

[Bluebonnet08]

HI Caro- is she taking any type of birth control pill?  It seemed to be a huge trigger for my POTS.  I just wanted to let you know that it can effect some people very badly

[Steven]

Hi Caro,

Dysautonomia and POTS are misdiagnosed as anxiety A LOT. It can be difficult to get the message across to some doctors. Sometimes the more someone protests the doctor's misdiagnosis the more the doctor takes the patient's protesting itself to be symptomatic of anxiety. I had to repeatedly explain to doctors that my symptoms were not anxiety. To get doctors to move on, I eventually went to a psychologist to explain the situation and got a letter from him saying that in his professional opinion it was a physiological rather than a psychological issue. It can still be a problem if I see a new doctor. Don't let doctors use a diagnosis of anxiety to dismiss genuine symptoms because they don't know how to explain them. If a doctor refuses to listen, sometimes the best or only viable solution is to see a different doctor. If you want, I can share a range of YouTube videos with the common feature of people getting misdiagnosed with anxiety (and other psychological/psychiatric labels) that was later diagnosed as POTS, including many teenage girls.

This info in this link might be helpful for diagnostic purposes if you haven't come across it yet: http://dysautonomiainternational.org/page.php?ID=30

The link might also be useful to share with a doctor.

A Tilt Table Test would be the best way to demonstrate something measurable to doctors in a form they will accept for initial diagnostic purposes. Then there is autonomic testing that can be done to refine the diagnosis and figure out the finer details of what is going on.

The heart rate and blood pressure measurements you posted, assuming they were taken correctly, are consistent with POTS. Maybe take some measurements at different times of day and at different temperatures, to see if the numbers are significantly worse at warmer temperatures or first thing after waking up.

Wrist cuffs are supposed to be held still at heart level when the reading is done, so maybe hold her arm up at heart level when taking a measurement so doctors have less reason to question the measurements. Movement or positioning of the wrist cuff might possibly have something to do with the 199 bpm measurements, but it also wouldn't be out of place for POTS if her heart rate is going that high and maxing out the monitor at 199. Children and teenagers tend to have a higher heart rate than adults. My resting heart rate is usually in the 40s/50s/60s range, depending on factors like temperature, but I've measured a heart rate upon standing of 149 and it often feels higher than that when I go for a walk or do something moderately physical. I've seen numerous people on YouTube who have heart rates that can go close to or over 200 upon standing or when walking. My blood pressure measurements at rest usually look very similar to the ones you posted. I use an arm cuff because it is consistently positioned at heart level, both when lying down and standing.