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Hello Everyone:)

Recently my daughter's doctor said she believes my daughter has POTS syndrome

she had the elevated heart rate of 30 beats per minute on standing. And had gone to the ER due to increased fainting/ dizziness/ blind spells. They are sending her thursday to see a pediatric cardiologist and (I noticed everyone here talks about neurologists) can anyone help me understand how to help her. What should we expect to happen and so forth? The amount of information I have found on this is mind boggleing but as we have to travel 300 miles to see this doctor i want to make sure I am prepaired with what to ask. Any help at all is greatly appreciated

Thank you from both of us


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Hi Cimyss :D Welcome to the site!

I dont actually have POTS and have not gone to a cardiologist so i am not going to be a good source for advice. I just wanted to welcome you and let you know that others will be able to give you good advice (just in case you are waiting around the forums for a response and have you recieved one yet).

Best of luck with the vist, i hope they have some answers for you and your daughter :)

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Welcome, I have found a cardiologist knowledgeable of dysautonomia to be my greatest resource. However, I have several cardiac dxs: tachy-brady syndrome, chronic and severe orthostatic hypotension, neurocardiogenic syncope, peripheral vascular disease. So, a cardiologist for me is the more beneficial specialist. I saw both a cardio and a neurologist monthly for a year (they both coordinated this) before I got down to just my cardio. So, it may be a trial and error thing for you to see which specialist your daughter will need. Of course, most people with dysautonomias see more than one specialist so you may be referred to a neurologist anyway.

What to excpect at your vist: the cardio most likely will order a tilt table test to confirm the fluctuations in blood pressure and/or pulse upon standing, your daughter will likely have an echocardiogram to look at her heart's structure, they will probably do several blood pressure readings on her in various positions (sitiing, laying, squatting, standing) in the office as well. Since you are travelling so far, do your research and have your questions ready. You don't want to forget anything. If your daughter is confirmed to have POTS or other dysautonomia, she will likely be put on medicine. This website has a wealth of information about various treatments. Unfortunately, the diagnosis and treatment is often a long and winding road. Good luck.


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Thank you so much everyone:)

I really want to help my daughter face this and not be an awful naggy mom about it:) My child has already been through so much with pins in both hips and adhd and so on that honestly we ( doctors included) have brushed these symptoms aside until they became so prominent. everyone has said things from growing pains to side effects. I am glad her doctor finnally took this seriously and is doing something about it.

On one hand i am glad to know what is happening and the possibilty she will feel better and possibly have more energy once diagnosed and treated properly. On the other hand knowing this disorder even exists is frightening. I am not very good at understanding all these medical terms, medications, tests, and so on....

Thank you Sal and Angie for your PM's

and taylortotmom Aprilmarie52 Eillyre Evie who replyed here letting us know this can be handled with a more possitive outlook:) thanks a bunch it reallly does help

It is so wonderful to know you guys are here:)

Sorry Aprilmarie52 but the doctors listed are further away and/not refered by my childs docotr for her insurance. :) I wish I had the abilty to pick a doctor based on this feild.

you guys are so wonderful thank you for reminding me to remain possitive :)


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