Wednesday, January 28, 2015

My Kid Has POTS.

So, my oldest child has POTS. It's not a joke about Colorado, nor is it something from an old Cheech and Chong movie.


NOPE.


Not these either.


I wish it was. It stands for Postural Orthostatic Tachycardia Syndrome, which when you break it down seems simple:

Postural --depending on her posture.
Orthostatic --related to standing upright.
Tachycardia --relative rapid heart action whether physiological (post exercise) or pathological.
Syndrome -- A disease that encompasses a particular group of symptoms.

In other words, when she stands up, her heart rate might increase 40 bpm.





A lot of people who read this will say, "Oh, she's just dehydrated.", "Oh, maybe it's just a virus. I hear mono lasts a long while..It'll pass.", "My aunt has IBS.", "I know a dude who is lactose intolerant." or my favorite, "She doesn't look sick."

Veruca, puh-lease.


After eight years, countless scans, blood tests, dozens of medications, two surgeries, monitors for her heart, for acid reflux, cyclic vomiting syndrome (there's that word again), different diets, hundreds of days of missed school, tears, pain, anger, frustration, depression and worry about suicidal thoughts,  the family would appreciate any such uneducated statements remain in your head. I know it sounds rude, but as Wonka says. "Veruca, please."

Let's be real here for a minute. Syndrome is a word doctors use because they can't really throw their hands up in the air and say, "Screw this! I don't know what she's got. Best of luck, pal."

But that's what it basically means. Here's a group of symptoms that are related somehow and they show up in 1 to 3 million people in the US alone (80% of which are females)...and we're clueless as to how we fix it.

But what is it, doc?

Dunno really.

Well what causes it?

Dunno really.

So how do you treat it?

Dunno really.

So...people are working on this, right?

Dunno really, I mean, I guess so. It really isn't as sexy as say...cancer. I mean it doesn't kill people, right? There's no real rush here. 

My prescription is go find another physician. Stat.


I can't really blame the doctors. POTS doesn't get any press. And we all know, if it don't make the news, and the celebrities aren't in an uproar, and there's no way of making money on it, I mean, deflate-gate is important. Those guys make millions. Life can't be unfair for them. As long as our priorities are straight, America.

The good news, if there is any is that people are working on it. The Mayo Clinic, for instance...but we've been there and other than a diagnosis and a three week "boot camp" that merely teaches you how to live with chronic pain, the best that can be done is trial and error with medications to treat the symptoms. Local doctors and specialists are still confused about her symptoms and it's up to us to explain things to them. Seems wrong.


So, we've been trial and erroring for 8 years. Each time there's a tiny step forward, it is fleeting. We are all still hopeful for a cure or a treatment regimen that everyone can live with...hopefully something that doesn't bankrupt the family, but that is secondary. I want something that gives my child the ability to live a normal life. She's already missed so much. Including going to school for the past two years. Friends. Sports, dating, dances, choir performances...that garage band I was stoked about with her (still hoping for that one).

I'm not trying to take anything away from cancer research or the horribleness of that disease, but let's take a peek at what POTS does to people. To do that, we need a bit of history.

It has been called DaCosta's Syndrome, Soldier's Heart, Mitral Valve Prolapse Syndrome, Neurocirculatory Asthenia, and Chronic Orthostatic Intolerance. I'm sure there are other names. Originally it was thought to be brought on by anxiety, but that has since been scrapped. It has been around for a long time. It wasn't until 1993 that the Mayo Clinic picked a name and stuck with it.

Mayo did a study of POTS patients from 2003 to 2010 only to find there was no universal treatment. In a near perfect bell curve, roughly 20% or patients recovered, about 50% had some improvement, and the rest showed no change or they got worse.

When I was in the Navy, I had nightmares where I would see my children go through horrific, violent things...and in the dreams I would run to them, but I was always a step too late. They would say things like, "I needed you, daddy. Where were you?" That feeling was a large part of why I only served one enlistment. What a sick jokester life is for allowing me to be home on nights and weekends instead of halfway around the world for months at a time...and yet I'm still unable to protect them from all the horrible things.

My wife might earn her sainthood for dealing with all of the doctors, nurse practitioners, nurses, technicians, therapists, insurance companies, teachers, principals, school boards, etc. since all of this started. Sometimes, all on her own.

You're welcome, BMW.


Research has now shown that POTS is caused by Autonomic Dysfunction.
Autonomic -- involuntary or unconscious.
Dysfunction --not functioning properly.

So involuntary functions of the body aren't quite working. I'll give some examples. Digestion, for instance. Imagine not being able to eat or drink anything without pain...for years. We've already talked about the heart. So what does that mean? Basically, every time she stands up, she feels faint and sometimes passes out. Just from standing up. It also affects the liver, the sweat glands...and those little muscles that make your eyes go blinky blink. POTS eats away at your quality of life. For years. It might get better, but it might now.

Can medications help? Maybe, but the medications have as many or more side effects than the syndrome itself. Some of them can be quite unpleasant.

Slight exaggeration.


My kid's mood, as you can imagine, can be quite unpleasant. As parents, we steeled ourselves for the teenage years, hoping for the best, hoping the usual mistakes would be mild, experimenting with drugs or alcohol, back talk, broken hearts, hormonal stupidity... What we wouldn't give to have those fights to fight. Instead we see our beautiful--if too skinny--child who sings like a bird, draws like nobody's business...the kid who wants to be a forensic anthropologist and wants to rock out in a garage band and wants to shock the world with her brand of hair, makeup and clothing style (which is pretty cool most of the time)...A kid who was outgoing and a little bossy, that made friends in an instant now spends most of her time curled up on the couch watching TV or staring at her smart phone because it is painful to just be her. We see her cry because her friends don't check in on her anymore. We see her struggle in school and have a teacher who must come to the house when she used to be a straight-A student. It isn't fair.

I'm thankful for my children. The one who is sick (my horror movie buddy) and the little one (my bundle of energy) who is--so far--healthy. She is affected as well. She worries and has nightmares. It takes a toll.

This week, I had a stomach bug. Three days of yucky inconvenience...but what right have I to complain when she's felt this way or worse for 2700+ days. Think about all you've done for the past 2700 days.

I wanted to write about this because it brings me back to center when I start pushing her too hard. When I say, "Do you homework. You can watch TV, you can do homework." When I forget that something that can distract her mind might take the pain away even just for a little while.
I wanted to write about this because even though she doesn't look sick most of the time, she is.
I wanted to write about this because at fifteen, her friends are passing her by, and they don't check in on her because they are fifteen. You remember fifteen, if she isn't in school, she must not exist, right?
I wanted to write about this because maybe if more people knew, more research would be done.
I wanted to write about this because I know there are other kids out there that are going through this and maybe they aren't lucky enough to have good insurance, or a doctor that's sharp enough to see the patterns, or parents that care, or the guts to say, "I just don't feel right"...
I wanted to write about this because maybe someone else out there has kicked this thing and knows a trick or two. We've met one other young woman who has been kind enough to share her successes and failures with this disease. 
I wanted to write about this because I love my kids and I want better for them. Who doesn't want that, right?

It's not my usual comic take on the fictional scary things...but sometimes horror isn't casual or intermixed with funny. Sometimes it moves into your house and hurts the ones you love. Sometimes it overstays its welcome.


New surgical possibility.


13 comments:

  1. Sorry is a very small word - I'm beyond sorry to know your child is suffering, Dan - I can imagine nothing worse. There is no justice in this world, but there is hope. My hope is that even though she is living with POTS, that she can still find the courage to smile, or even laugh when the moments come.

    ReplyDelete
  2. I think I can empathize with you a bit. I have syndromes and i have lived with children with chronic ailments (siblings). Your daughter sounds really cool and talented so I hope she pursues her interests. If we were in the same room, I would give you a big squeeze to convey my support.

    ReplyDelete
  3. I am so very sorry that this is happening to my friend and to his child. You and your wife have taken your daughter to the best doctors. You've done what every parent would do. It's hard to watch our children suffer and know, as of now, there is no help. Dan, I'll spread this story for you in hopes that it will get the word out there about the disease and maybe get funding, but I will also put your daughter on our prayer line. Please keep me updated on how she is doing.

    ReplyDelete
  4. Thanks all. We're doing what we can. She still laughs and hangs out with friends when she feels up to it. On good days she acts like a teen. Loud music, big hair, attitude...Google is acting weird today, so hopefully this will post.

    ReplyDelete
  5. Dan, I am very sorry to hear this. I know something had been going on for awhile, I obviously didn't know what. It's easy for someone like me to say "stay strong" to both you and your daughter, when the pain isn't mine to own. And as parents, we wish we could - own the pain, that is - take it away, take it from our children, so they don't need to know of its existence. Cruelly, that's not the way it works. I will say: keep doing what you & your family are doing, and do so with love. Let your daughter know it's not how many of her friends that have left her behind, but about the one that has stayed (of course, a 15yr old doesn't want to hear that). And, foolish as this may be to say, please, please, please do not give up. Imagine where she might be if you all had. Like Nina said, courage is in the laughing, the smiling. Sounds like your little lady is as brave as can be. Reach out whenever you need, my friend

    ReplyDelete
  6. Thank you for writing this. I have a story not so different than your own. I did six years in the Navy and got out because I wanted my kids to know that Dad was going to be there to take care of them. Now I have an eight year old with a digestive issue that (so far) doesn't have a name. When he eats, he throws up - we tried eliminating dairy, peanuts, eggs, gluten...each had different levels of results, but none stopped the problem. When we go to a restaurant, he rides home with a plastic bag or large cup to vomit into. He's up three, four, eight times a night to vomit. And he's eight. He's just f***ing eight years old.

    All I can do is rub his back and wipe his mouth and hold him. But then I have to hold him down when they take blood, too.

    And you know what? I'm lucky. When I took him for his barium imaging, I heard a woman screaming hysterically at someone "You're supposed to fix my daughter, and she's just getting worse!" What I have with my son is a quality of life issue (there's no evidence of malnutrition), and while it's easy for me to get caught up in hand-wringing, it isn't so bad that it impacts other areas of his life. There is no doubt that he will continue to have a life. Other than an occasional bad night, he isn't in pain.

    I want to know what's wrong. I want something to be mad at. I want an answer for when he looks up and says, "Why am I sick all the time?"

    "Sometimes it moves into your house and hurts the ones you love. Sometimes it overstays its welcome."
    And sometimes being big and strong isn't enough for our kids. Damnit.

    Thank you for writing this. I don't feel quite as alone, and that will help me help him get through this, even if it takes decades. I hope I didn't hijack things too badly.

    ReplyDelete
  7. Thurman...keep plugging away. Our daughter started with vomiting when she was about eight. It happened every six months, then every three, then monthly, then it seemed like all the time. That has passed, partially because she has trained herself not to get sick. It's tough to watch and be helpless. I hope it gets better for you. We went through the entire million dollar workup with a great GI doctor who couldn't find a thing wrong with her. It took us 6 years to get this diagnosis and then she basically had to start over with meds and routines to look at her heart. I'm not trying to diagnose anything for you, but it might save you some time and heartache if you looked at other issues along with GI... and I can't recommend Mayo enough. They don't stop until they have a diagnosis...even if the diagnosis is something that doesn't have a cure.

    ReplyDelete
  8. Thanks, Joe. No one is giving up. Not until she graduates and moves out on her own to kick the world in the nuts. Still won't give up at that point. Some kids grow out of this. I hope for that with her and soon. I hope that all of her suffering is being documented and will help others not suffer as long. It's tough to swallow because I'm a technician. You troubleshoot, you find the problem, you replace the faulty part and you plug it back in. People are quite complicated.

    ReplyDelete
  9. Dan, I have been on the same merry go round. I even waited 9 months to get in to top place, The doc gave me 33 mins. of his time & did not ask for blood,urine or tissue sample. I found out there are different types I had no idea. Nurse called a couple times to ask how I was feeling & Dr. called me because I am getting worse & said he would have his team look over n/c tests that has been over 3 wks. I have not heard anything. I found out the other day that they have autoimmune dysautonomia & Mayo is the only place that you can send blood to be tested. http://www.mayomedicallaboratories.com/articles/hottopics/2011/02-auto-dys-eval/ I have not done this yet it is on my list. Maybe we can start a #StandUp4Dysautonomia to raise awareness for so many of us. We need a cure. Music is the only thing that helps I have been teaching my self how to play any instrument I can find it helps me stop thinking of all the pain. I rather be in college but for now I just try to absorb the knowledge that my mind can take in. It sounds like your daughter has great parents. Because she knows this gravity problem sucks!

    ReplyDelete
  10. Maybe. There's a surgical procedure available that is supposed to provide some relief... it's called TVAM... we're looking into it to see what the options are.

    ReplyDelete
  11. My kid has POTS and it absolutely steaks their life; their fire; their soul. It's painful to watch and to know we as their parents can't even protect them. I hope your daughter is feeling better.

    ReplyDelete
  12. My daughter had POTS and it just keeps getting worse. It's horrible watching your kid struggle. This takes their life, their light, their soul. And we as parent can't even protect them. Has your daughter found anything that helps?

    ReplyDelete
  13. It's awful, Adelyne. I'm sorry you're going through this. It's amazing how common it is and how wide ranging the symptoms are. She has found a lot of things that help, adjusting her diet has helped the most. She eats a mostly vegan diet, but even then the fruits and vegetables can be rough on her system. She has trouble with sleep patterns, and she still has pain where there is no obvious cause (obvious to her, obvious to us, or obvious to x-ray, CT scan, MRI), but she manages and we're hoping she will eventually grow out of this--that her body will reset in some way. The best thing she has found is focusing on other things--School, playing the guitar, friends, art, anything that takes her mind somewhere else. It's something I've told her for half of her life--some folks just have to try harder to get the same results. It sucks and it isn't fair, but you have to hang in there.

    ReplyDelete