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12 yr old daughter possible POTS HELP!


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How do you get doctors to quit blaming everything on puberty and anxiety! My happy and healthy 12 yr old went from playing basketball and 3 softball teams to barely making it through a school day. It was like lightening striking out of the clear blue sky! She was on the softball field and almost passed out. Took her to primary ped and they sent her for EKG due to her heart being out of rhythm. EKG came back with frequent PACs. Went to cardio another EKG (showing frequent PACs) and did a kind of tilt table test and she almost went out. Diagnosed her with Orthostatic Intolerance told her to drink 3 liters of water daily and increase salt intake. Put her on a 24 hour holter which showed frequent PACs with 2 PVCs was told there wasn't enough to treat. Went back to primary because she just felt awful no energy, complaining constantly of pounding heart and just going up steps getting short of breathe. Primary ordered echo, echo showed mild mitral valve prolapse with mild regurgitation. Went to new cardiologist and that nothing was wrong enough with her heart to treat. They blamed all of her symptoms on anxiety!  They act like it's perfectly normal for her heart rate to jump all over the place, the only doc concerned is her primary and I can't get anyone to help. We just completed a 3 day holter which I'm sure we won't get anything any different from. I don't care what the test say something is wrong with my child! 

Here's a list of all her syptoms

heart palpitations, dizziness, nausea, extreme fatigue, weight loss, sudden change in vision, she's always cold, very pale and her newest symptom is brain fog/confusion.

A friend of mine who is a nurse practitioner is who suggested POTS. I mentioned to both cardiologist and they both said yeah that's a possibility and went back to blaming everything on anxiety. I'm waiting on the 72hr holter results and then figure my next steps. Was hoping you guys might have some suggestions.

Thank you.

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Same thing happened to me. Mine started at 13. 

You are going to have to find a doctor that specializes in dysautonomia. A lot of cardiologists say they treat it, but really don't do much. Have you tried a neurologist?

Not to discourage you, but I was 35 before I found out what was going on. There is way more information now and the internet has changed the way we live. My parents didn't know that the doctors were wrong back then. You do and you can fight for you daughter. 

Keep going.

Kim 

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Hi Motherof3girls!  I'm the mother of two girls!  Both have POTS, Ehler's Danlos, and my oldest has craniocervical instability along with Mast Cell Activation Syndrome.  Both of the girls started showing signs of POTS when they were about 13.  I think that puberty is about right, not that it causes it, but my girls' neuro said that if you have something at all, puberty is the likely culprit to sending something into orbit!  It's not that it causes it, it just makes it worse.  Sounds like she does have POTS.  For tachycardia, my oldest takes propanolol 10 mg, once a day and both of them take Florinef.  While it's not a cure-all they help.  My girls have vertigo terribly, so we always have that to deal with besides the POTS.  But the important thing is to keep looking for a neuro or cardiologist that is up on the latest info on POTS.  Most local cardiologists don't have a clue, but every so often you can find one.  Like finding a needle in a haystack!  For now, eat a high salt diet and drink Smartwater until you can get some help.  That's how we figured out the girls had POTS.  My daughter was eating a lot of Lipton Noodle soup because she was fighting gastroparesis, and her vertigo started getting better.  It was the salt!  So, keep that salt shaker handy!!

Please feel free to ask any questions, there are a lot of really great people here and we are ready to share what we've learned with you!!

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I personally had the problem where all the doctors were saying anxiety and/or smoking. My 1st cardiologist all but dismissed me. I have been having my POTS symptoms for almost 2 years. I ended up doing a poor man's tilt table everyday for a month and recorded my info. So when I went to my 2nd cardiologist he couldn't dismiss me or my raw data. He agreed to put me on the tilt table. I was diagnosed this past Janurary. For a while I thought what was going on with me was environmental because my 13 y.o. son was having similar symptoms. So I started doing a poor man's tilt table on him and I suspect he has POTS too. He goes next month to see a cardiologist and hopefully with the raw data I can convince them to do a tilt table on him too. Not all of his symptoms are the same as mine but a lot overlap. And when I am at my worst, he is right there with me. Don't give up hope. I have been through at least a dozen doctors for myself over the last year. Sometimes it takes a while to find the right medical team to find the answer. No matter what the answer is.

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I'm fighting against 13 years of psychiatric [mis]diagnoses, including anxiety and panic disorder. I also get mood changes when standing.  I am just starting to figure it out - in my 30's!  Seems to make a difference to tell a doctor that the mood/anxiety/irritability disappears immediately when I lie down.  I collected data for 2 weeks and presented it to my primary doctor.  He put in preliminary POTS dx and referral to neurology. 

Arm yourself with data.  Treat it like a science experiment and try to isolate variables of what makes it better or worse.  Those details *should* make clear it's not anxiety.

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Thank you for the suggestions. I'm trying find a descent app for her to use to track heart rate and symptoms with. Do any of you know one that's good? I had heard of POTS a couple of years ago because Mayo thought my sister may have it, but she didn't so I never researched it. She suffers from T1D, Graves and AMY.  It may just be because I'm familiar with Graves, but I feel like POTS is just like it but without the thyroid being involved.  My sister spent years in misery due to her Graves and almost died before they figured it out (of course that was 20 years ago).

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Mom of 5 girls here (and 1 son). My 12 yo was just diagnosed. I switched cardiologists since the first one said he wasn't sure that Pots was a 'real thing'. A got a new referral and checked all the doctors on the list and researched their bios on their websites. One said that he treats Pots patients so we went to him. He diagnosed her with a sit/stand test and said there was no need for a tilt table test. When we left the office I noticed that he didn't put the diagnosis on the paperwork, he had left it blank.  So I went back in and waited another 20 minutes for them to fix it. I'm glad I did, otherwise no one would take my word for it, not doctors or family, just a couple close friends, and my daughter who was suffering and knew her symptoms matched. If you pick a new doctor, and you're still not sure, call the office and ask if they test for Pots. You could get a good feel for how serious they take it that way.

The fitbit hr 2 (a friend suggested it, but we don't have it yet.) Evidently the second model keeps a 24/7 heart rate chart, check first, I'm not completely sure. We have a finger pulse oximeter which is great for checking it now and then. We've done sit/stand tests with it. It was only $20 on Amazon. 

Good luck. I know how frustrating it is to not have a proper diagnosis. 

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@LowlypopsMom Thanks for the suggestions. I liked the last cardio we saw and I'm waiting to see what this 72 hour holter says before I do anything else. It just amazes me that they don't mention POTS until I say something about it and then it like well that's a possibility and then go right on to talking about more water etc. I understand the importance on water and salt, but geeze my child was an athlete and now she struggles to make it through school. I feel like I'm talking to a blank wall sometime. We even had one doc suggest she was just deconditioned. Really?!? This all began in the middle of softball season which started before basketball season was even over. It struck like lightening, the day before she was running laps and doing drills. The next day warm-ups made her out of breathe and then she almost blacks out on field.  I sometimes feel like they nit-pick and only hear what they want; they are listening to respond instead of listening to the whole story and then making a conclusion.

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@StayAtHomeMom I have looked at this site many times, but have not been able to find any info on this Dr. He's not listed on any of the POTS sites and I can't find any reviews on him. I feel like I've already spent so much time and money I want to know that it's a Dr that's going to listen and really try to help her before I even make an appointment.

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Try calling and asking a few questions. Explain you want to interview him as a potential doc for your daughter. Or even ask some questions you know the answer to already and see how they answer it. If they take the time for you then it might be worth it. Where at in KY do you live? I live in Lexington. I know my experience with doctors here haven't been great.

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I have had POTS for over 20 years. I get weekly infusions by a home health nurse and have an excellent POTS doctor in Dallas, Tx.  DR Amer Suleman. Just found out my heart is operating at about 42 percent.  I am sure he will do whatever he can to reverse that.

 

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@StayAtHomeMom we live in Irvine. About 46 miles SE from you. We have already seen 2 different cardiologist both have said possible POTS, but just left us hanging. Said we needed to find a specialist, but had no suggestions. One said she just had anxiety and needed therapy. They both say her heart is not the issue that her PACs and mitral valve prolapse are minor and are not causing her symptoms. Her resting heart rate can be anywhere from 85-130, standing 140-160, causal walking 148-170, she dips into the low 40's when sleeping and sometimes her bp is so low you can't get an accurate measure. One doc even said she was deconditioned to which my husband about blew up over. She played basketball and softball up until the day she almost passed out on the field and we found the heart arrhythmia. She's missed the entire school softball season, travel ball starts this week and we are going to slowly get her back on the field and see how it goes. She's scared to death she's going to pass out. I've tried to tell her if she feels an episode coming on to sit down and yell at the closest person to her. If she goes out completely I'll be right there with her til it passes. She's up to 1.5 liters of water on top of other daily fluids and we've increased salt.  It has helped some, but she's not been active. I really don't understand what we have to do or what has to happen to her to get some help. Her pediatrician is genuinely concerned, but every cardio seems to be passing the buck.

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Did the cardiologists do a complete workup, echo, EKG, stress test, ct, and holster monitor to rule out cardiac?

Her symptoms sound like pots but it is important to make sure heart is sound 

My heart runs 69 to 90 during day 

90 to 150 standing

At night can run in low 60's and high 50's 

Find a cardiologist or neurologist that is trained in autonomic dysfunction Google it in your area and get her in 

Any questions ask will do my best to answer

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@Davidinaz She's had multiple EKGs that show frequent PACs and an echo that showed mild mitral valve prolapse with regurgitation. We've seen 2 cardiologist and both say her heart is fine and that's not what is causing her symptoms. She's had a 24 hour holter and a 72 hour holter, both just showed sinus rhythm with sinus arrhythmia with frequent PACs. However the frequency increased from 8% with the 24hour to 13% with the 72hour but they didn't seem to think that meant anything. They were taken about a month apart. She was diagnosed with Orthostatic Lightheadedness. When I mentioned POTS both cardiologist said it was a possibility, but then went on to say they thought she had anxiety issues or was deconditioned or some other frustrating answer that wasn't a real answer. She's an athlete and not deconditioned in any shape form or fashion this started on the softball field, she plays school ball, league ball and travel ball, plus she plays in a basketball rec league. She does have some anxiety now, but who wouldn't with her heart rate bouncing all over the place and feeling it constantly fluttering around.

I can find only Dysautonomia doctors in my state, the one in the thread above and another, but her doesn't get very good reviews. I've started taking resting and standing readings with a blood-pressure machine and recording them, we ordered her a google fitwatch that does continuous heart monitoring and charts to an app. She also having insomnia issues even though she's fatigued and exhausted. 

I asked her the other day if she was feeling a little better because she wasn't complaining as much. She said, "No. I'm just getting use to feeling like crap and feeling like my heart is going to jump out of my chest." It broke my heart. My child should not have to get use to feeling like this. :(

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1 hour ago, SarahA33 said:

Hi there, have you seen Dr Ian butler or Dr. Nuemen at the dysautonomia clinic at memorial Hermann?

We live in KY. The closest t clinics are in OH and TN. I have been able to find 2 doctors in KY that treat dysautonomia, one doesn't get good reviews and the other I'm going to call and get a feel for them and see if it's worth my time and money to even try and see them (they are a 2 hour drive away for us).

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@SarahA33 Columbus is about a 4hour drive for us. I finally called the doctor's office in the thread that's in Louisville. They were extremely nice and talked with me about 20 minutes. After hearing her symptoms and previous diagnosis and knowing she's an athlete they are going to see her next Friday. I am happy and hopeful that we will get some answers and scared that we won't. He specializes in Dysautonomia and has been treating disorders for 15 years and is associated with the Dysautonomia Youth Network of America so I'm hopeful.

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You said you ordered a fitbit. We ordered the garmin version. The app is a little odd but the garmin is amazing. It is waterproof. I never take mine off except to charge it. I have showered, swam and done dishes with it. For an extra 20 I felt it was worth it. I got mine cheap at best buy because they price matched it from amazon.

Let us know how that appointment goes. I plan on making my son an appointment as soon as I am sure my van will make it. Seen a cardiologist at UK this week. She was useless. Didn't even look at my data for him and said "the diagnosis doesn't matter" and he should drink 6-8 bottles of water a day and dehydration is probably what is wrong. They did do a poor man's but it was unlike anything I had ever seen. Lay for 5 minutes, sit for 5 minutes, and then stood for less than a minute.

I hope your family gets answers soon. Your in my thoughts and I know how frustrating this whole thing is.

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On 5/13/2017 at 10:45 AM, StayAtHomeMom said:

You said you ordered a fitbit. We ordered the garmin version. The app is a little odd but the garmin is amazing. It is waterproof. I never take mine off except to charge it. I have showered, swam and done dishes with it. For an extra 20 I felt it was worth it. I got mine cheap at best buy because they price matched it from amazon.

Let us know how that appointment goes. I plan on making my son an appointment as soon as I am sure my van will make it. Seen a cardiologist at UK this week. She was useless. Didn't even look at my data for him and said "the diagnosis doesn't matter" and he should drink 6-8 bottles of water a day and dehydration is probably what is wrong. They did do a poor man's but it was unlike anything I had ever seen. Lay for 5 minutes, sit for 5 minutes, and then stood for less than a minute.

I hope your family gets answers soon. Your in my thoughts and I know how frustrating this whole thing is.

After we have our appointment Friday I'll let you and everyone know how is goes. Hopefully we'll have good luck and if we do you can call them too. 

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  • 1 year later...

Since it's been a year since the last post I'm not sure if you're still looking for suggestions, but we've been in a similar situation the past year. The only difference is we got a tentative diagnosis from the er and cardio and Neuro are saying if she has it, there has to be something else going on too. However, some of her other doctors are completely dismissive. It's frustrating, especially when her bp drops super low, or she uses a wheelchair because she's to dizzy and lightheaded to walk or stay standing for more than a minute or two. My mom suggested that I talk to her insurance. Insurances will pay for you to go out of network(including out of state) if there isn't a doctor or clinic closer you just need a medical necessity letter from one of her current doctors, some even pay or help with travel, meals, and lodging. It's worth a shot if you still need a good dysautonomia doctor. Our issue is that we couldn't find one that would see pediatric patients, just adults. We now have an appointment with a pediatric dysautonomia specialist 300 miles away. Also, if she doesn't have an insurance case manager it might not hurt to inquire about one with her insurance, they can help you navigate the insurance side of stuff.

Another thing is don't rule out other illnesses that cause autonomic issues like Addison's, autonomic seizures, thyroid, etc. My daughter's cardio even sent her to get her kidneys checked in case they were processing to much fluid out of her body.  This is especially important if other autonomic systems are involved like breathing, bp drops that aren't orthostatic, extreme fatigue/can't be woken up, etc.

You're doing the right thing by not giving up. Good luck momma!

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