Category: postural orthostatic tachycardia syndrome

The Fallout

That’s the reality of POTS. There are aspects of this that you can’t make pretty. You can’t dress up a breakdown. You can’t laugh off an attack like that.

The reality of HyperPOTS

At a glance, this illness seems like a college girl’s dream. Always in leggings (compression), watching lots of  Netflix, eating bad salty food, and not working (because you literally can’t handle any form of stress) Toward the end of this post is the reality. I try hard to be upbeat and positive because it helps me get through it, but days like yesterday, those are the days that you can’t ignore.

Yesterday was a bad day. Yesterday was the much-anticipated fallout of all my positivity and energy I spent getting through this week. I knew I was overdue. It’s the most I’ve walked and talked since Christmas time. I woke up at 6 and I knew. I could feel it all like a snake poised to strike. I went to the continental breakfast not caring about fluffing my hair, putting in glasses/contacts, no makeup just schlepped my way with my mom. One half-eaten waffle later we went back to the room. In the darkest room we were able to make with large pillows and a tall chair blacking out the window I laid quietly. The left side of my chest hurt. I laid there clutching it quietly. My blood pressure cuff automatically went off every ten minutes and it created a throbbing pain and with the prolonged and constant measurements, it began inducing palpitations. My skin was raw and red where the four electrodes clung to me. I could already tell the lower two on my ribs would bleed when I removed them.

My mood was bad. It’s rare for me. Sad every once in a while but never really bad. I was grumpy. I hate being grumpy. I hate trying to not be grumpy but anything I said sounded grumpy and short. So I kept quiet under the extra blankets we ordered for my freezing body. I was relatively nonverbal yesterday. This happens on bad days. Talking seems impossible on these days. That’s how everyone knows I’m sick. When I can’t talk.

My friend was supposed to come down and I thought it’d lift my spirits so I looked forward to it. I took a warm bath to calm my constant shivers. 6 minutes later I was out and my legs were angry red with pooled blood and I was so swollen I couldn’t bend my ankles. I was even worse now. I was exhausted. We had to cancel our plans and the harsh reality of my current limitations were once again, in my face.

Toward the end of the night, I felt a little better. By my Apple watch’s count, I’d taken 38 steps since breakfast. After laughing at some videos with my mom I turned over with my headphones in. When getting settled under the blankets, the button volume on my watch must have been moved because the sound went all the way up during Bazzi’s 3:15. This may not be a big deal to most. A minor inconvenience to some. To me it was catastrophic. I yanked out my headphones. Due to my HyperPOTS with high norepinephrine levels, my body freaked out. I began to full on sob. Uncontrollably sob. I couldn’t stop. It was just sound. But I couldn’t handle it. My mom came to my bedside confused and trying to figure out what happened. My pulse jumped by almost 40 beats per minute. My blood pressure dropped and my body temperature went up. Her touch began to panic me and caused my temperature to spike even more. I pushed her away and threw off the covers only to desperately grab them again seconds later to calm the shivering and tremors. I kept sobbing. And sobbing. And sobbing. Trying to breathe deep and acknowledge that all that happened was just a loud noise. I was safe. It didn’t matter. You can’t outthink chemical reactions in your body when it’s like that.

These are the moments that are hard. Because by no means should a song playing a little loudly trigger a five-alarm fire response, but it did. And it will continue to, for the foreseeable future.  I did find a way to disable the music controls but holy buckets.

I’ve been so spoiled being able to medicate in Portland with potent CBD so I haven’t had one of these episodes in months.

Sometimes I need these moments. I need to feel what I’m going through this deeply so I remember to give myself grace. I need to acknowledge where I am. Despite countless motivational quotes, there are certain things you can’t do. (Not right now anyway.) I spent a whole day catering to my needs and nursing myself to a somewhat stable condition only to break down over a volume increase.

That’s the reality of POTS. There are aspects of this that you can’t make pretty. You can’t dress up a breakdown. You can’t laugh off an attack like that.  It truly turns your life upside down.

 

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Photo Cred: Janie Barber. circa 2016.

 

Iron Woman

No matter what I am doing at the time, I need to freeze. It’s like playing a game of medical freeze tag all by myself.

Today was a day I needed. We sat across from Dr. Elizabeth Coon and went over all my results. My sweat test, the prickly one they did before my tilt table test, showed a low amount of sweat on my foot which means *drum roll, please* I have Neuropathic POTS.  She believes the series of back to back colds I had for 3 months this fall caused the Neuropathic POTS (NP). NP symptoms come on quickly. Which is why I could run a 5: 48-minute mile in October and by January I couldn’t (still can’t) stand for more than a couple minutes. So NP is partial sympathetic denervation, especially in the legs.  Basically, a dysfunction of one or more peripheral nerves. Just weird, nerd stuff. But….my hands tremor. As in, if Kevin Bacon were around he’d be all,

 

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The cult classic, Tremors

 

My blood pressure rises whenever it so chooses and I can feel my adrenaline coursing through my body. So Dr. Coon said I have crossover symptoms so I technically have both Neuropathic and Hyperadrenergic (pronounced: hyper-adjre-ner-jic) POTS. She thinks that my low ferritin (mine is 8, anything under 50 is low) caused my HyperPOTS.  

None of this matters cause here is the cool part, my buddy Dr. Elizabeth Coon said that if I adhere to everything and aggressively get after it, in a year or a year and a half to two, I could live a somewhat normal life and then just maintain the cardio and diet! HOW GOOD IS GOD?! Like I could go to Disneyland and just make a day of it. I’ll need a recovery day or five but I’ll be able to handle it!32205824_10215292942824141_168459784264089600_n

So my current goal is to walk 10 minutes 2 times a day and then work up to 60 minutes somewhere way way way down the road. I also need 10-20 grams of salt a day. Is that a lot of salt, you ask? Well yes dear, the normal human should never exceed 1.5 grams apparently. I’m no mere human though, I’m a Potsie so I can eat as much salt as I want and it isn’t enough. She gave me this amazing list and Kimkim isn’t happy about it. As you can see, my doctor told me to drink hot cocoa, have cake, eat bread, and pancakes. So lots of Olive Garden and IHOP! Maybe this POTS stuff isn’t so bad!

She also prescribed me some additional iron pills to get my ferritin up. You’ll notice the title is “Iron Woman” this is ironic (lol can’t stop, won’t stop) because I don’t have much iron.  I get to take Propanolol, a beta-blocker, 10mg twice a day to start. This will help with my heart rate as well as the constant palpitations. We will start this after we get to Myrtle Beach in case something happens while traveling. Low blood pressure can be an issue with this medication and we don’t want to pass out in an airport. She also recommended Water Bolus Therapy. WBT is when you chug two 8-ounce glasses of water to higher blood pressure whenever feeling sick. This can higher blood pressure as much as 40 points.

We got my 24-hour Holter monitor as well as my 24-hour blood pressure cuff. I’ve got more wires than Iron Man.  The blood pressure cuff goes off every ten minutes. No matter what I am doing at the time, I need to freeze. It’s like playing a game of medical freeze tag all by myself. Yes, on our way out I had to stop in the middle of the hallway and tell the woman behind me to pass on my right because I had to stand still. Such is life. I also always forget that I am allergic to the four little electrode pads for the Holter monitor, so they itch like crazy…

We went to this sick-nasty green granola place and I’d like to blame my nausea on the food. I was ok before we went in there… Anywho. I wanted to be a dork and document some of the excessive wiring. So I put on an off the shoulder top and posed through the nausea so we could pretend that POTS is cute. I know some of you are thinking, “Really? Of course, Mariah has a top like that when going to Mayo” You bet your bottom dollar that yes, yes I did bring a top like that.  I did like walking through the clinic with my little blood pressure satchel because I felt visible. That is something really hard about POTS. If I’m sitting down or walking for 8 minutes or less, I don’t look sick. But my sexy satchel? Everyone who saw me knew I meant business.32293394_10215292878222526_525809691880587264_n (1)

So thank you so so much for all your prayers! Basically, I’ll take a year or so, reconditioning my system and hopefully, I will be able to get back to working like a normal 24-year-old!

Nueve de Mayo

I’M DONE FASTING!

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I’ve had tests every day this week where I am asked to fast and I have not been into it at all. Being this close to a Valentino’s and not being able to go ham has not been good on the soul.

Finished my last test at 3:35 and ordered Valentino’s at 3:42 while waiting on an Uber in the Mayo lobby.

Today was the first time the new Epic system kind of got on my nerves. We had to wake up early to go get my 24 hour Holter Monitor and blood pressure cuff. We do the song and dance and get to the 19th floor only to be told there is a glitch they can’t override so they couldn’t give me the monitors which means the test won’t be finished in time before my meeting with my specialist. So we won’t be able to go over the results with her in person and talk about how we want to handle it. The purpose of this test is to confirm my subtype of POTS. If it is Hyperadrenergic POTS, it will show my blood pressure rising along with my heart rate. We do have results from my stress test where both were taken. We just won’t have a 24-hour span to see potential patterns.

BUT this did allow us to have a yummy breakfast at a cute little family owned cafe by the hotel.

So Mayo take two today….

I discreetly hauled my pee container from yesterday in an MK bag because, fashion. Dropped it off and no one was even looking at me funny! I think I could be a drug dealer. Be calm, be cool, make the drop, get out, don’t be seen. Idk if that’s how drug dealers talk but I bet they do.

Today was my Endocrine Test. For those with Hyperadrenergic POTS, HyperPOTS for short, the Endocrine System is the gossipy part of your body. Your Adrenal Glands are part of the Endocrine system. This is where your “fight or flight” hormone, adrenaline (epinephrine), starts. So for HyperPOTS, the Endocrine System is playing telephone, which we all know never ends well. My brain says, “stand up” but my systems call out, “OMG, omg she said we gotta stand up for ourselves! Fire up the canons!” The Adrenal glands get very, “You about to see something you ain’t never seen before”, a la Seabiscuit and then my heart gets going and I feel like absolute crap on top of it with lots of adrenaline and no energy or monsters in sight.

This test is done by giving me an IV, putting me in a dark quiet room for 30 minutes, having a nurse quietly come back in and take two vials of my blood through the IV, and then they have me walk around for 10 minutes and then having my blood drawn again. So if I do have HyperPOTS, my blood will hopefully show something that Mayo has seen before and we can better treat me. Hooray!

Let me tell you a quick little story. It’s about what I overheard in the waiting room. I have been realizing that I am the only person I have seen here under 65. As most patients are older, they talk louder and say things. Some adorable, some ignorant hateful.

So I am reading this really cool little display that tells the mini-biography of the man the Mayo Clinic Zayed Cardiovascular Center is named after, Sheikh Zayed bin Sultan Al Nahyan. I’m finding it really cool and tell my mom he must have donated millions of 32191159_10215286100693092_531859883461443584_ndollars. Can you imagine donating millions of dollars to someplace halfway across the world that you don’t go to often? So I start googling this man, seeing what all he has done and take this picture because I love his quote and a couple minutes later this old bigot sits behind us.  He then lets out a disgusted grunt and says to his wife, “look at that *racial slur* he’s from the middle east, guess he’s from the UAE which is better. But still a *racial slur*”. He said a couple other things but I was kind of too upset to process them because here we are, in this place that this man gave 25 million dollars to (this number was not made public until after his death per his request because he didn’t even want publicity for it.) Here is a quote from Chris Gade, the department’s chairman, “He recognized and he has told us directly that the money is really an expression of support for Mayo’s mission to provide the finest medical care to current and future patients without regard to race or creed from all countries of the world,” Gade said of Sheikh Zayed. “That was his specific language back in 1996.” So, sir, if you have an issue sitting in Sheikh Zayed’s waiting room, due to his race, waiting to get potentially life-saving care from some of the best practitioners, and he helped make it possible? I suggest you go somewhere else.

 

*deep breathing*

So yeah test went great and I ordered Valentino’s in the lobby at Mayo so it’d make it to the hotel when we did. And it was amazing, full of flavor and no racism.

I had to order us minis because although the large was great, the box didn’t fit in our fridge and it ruined my leftovers.

You want me to do what…..?

“I was ushered into a room and given a container in a bag that looked like it was from the latest Yeezy collection. She pulls out this massive container and was like yeah so just for the next 24 hours…”

Ocho de MAYO!

Last night was one of the worst nights I’ve had as far as physically and emotionally. I ran out of my CBD drugs that my friend Connor had been getting for me. So I had nothing to calm my system down.  My adrenaline levels and the painful palpitations that started after my Tilt Table Test along with a severe headache continued to be an issue until I finally went to sleep around one. I was just uncomfortable and sick of being sick and had a cute little meltdown on the bathroom floor. I hadn’t taken off my mascara yet so it was fantastically and tragically dramatic.

So today we had blood tests, a stress test, and I picked up my Container (wait for it.)

We got a wheelchair today because Mayo does not give out brownie points for overdoing it so. No glory, no guts. Blood tests were great. Nothing to report.

The stress test was lacking because, in my mind, you know the scene in Space Jam when they are trying to test the athletes to figure out what’s wrong?  The guy running the test said, “how are you doing?” I said, “well I feel like I’m in the Space Jam montage but I’m missing that Barry White song…” He didn’t get it. We continued our non-talking, patient-tech relationship as I did not want him as a friend because he failed miserably. For you uncultured swine or for those of you that want a refresher, Space Jam Stress Test.

I was only able to walk for 8 minutes and 15 seconds before I became too symptomatic to continue the test. Apparently, they predicted that I’d go for 11 minutes and 39 seconds. I just love underachieving.  Especially with my health.

By the time this was all said and done, I had been fasting for 15 hours. Most of you know, food is my favorite so I was more than done. So we wheeled underground to a neighboring hotel and got a large cinnamon roll and french toast before taking a quick nap. 

Now let’s get to the good part shall we?

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My schedule said that at 7:10 a.m., I had to pick up a container. With POTS, as some of you who have read this blog before, you know that salt is a big deal for my condition. So in order to figure out the proper amount of salt I need, we need to watch my potty. It was more aggressive than I thought.

I was ushered into a room and given a container in a bag that looked like it was from the latest Yeezy collection. She pulls out this massive container and was like yeah so just for the next 24 hours, you need to pee exclusively into this container. Like full on, carry this bag around in public and go about your day like it’s normal.

So below is a video of me oversharing because it was a source of joy for us today and anything that can make me laugh through all of this crap right now is deemed worthy of sharing.

Siete de Mayo

Happy Siete de MAYO, all,

So today we met with the lovely Dr. Coon. She is an Autonomic specialist in the Neurology department at Mayo Clinic. She’s great. She didn’t even have to use the Google to know what POTS is! Whaaaat? Anyway. So the beauty of having patience is that we kind of had Mayo to ourselves. The waiting rooms here can hold no less than 100 people.  We were two of maybe 10 in each waiting room we went to. What does patience have to do with this? Well, Mayo switched to Epic software and today was the first day so no one knew what to do and there were four people from Epic per Mayo worker which seemed a bit much. Anywho, we were warned it would be mayhem and it may take forever and we were like, “yeah no, that’s chill. I’m really sick. I’m just sitting around anyway, may as well be for you guys.” Most people rescheduled their appointments to avoid this, but it wasn’t too shabby!

I’m running on more adrenaline than normal due to my even more erratic sleep schedule… and the appointment started at 7:10 a.m… and I’m still on Portland time. So one can imagine. So she called out my shaky little self pretty quickly as I get pretty bad tremors in my hands with POTS anyways, especially with that much adrenaline.  As we suspected, she’s pretty sure I have Hyperadrenergic POTS (irregular blood pressure, heart rate, and ADRENALINE rushes). So more tests tomorrow will help figure out the best way to combat this so I can be casually alive again.

So today is the day I have been dreading: Tilt Table Test day.  The technician’s name was Jeff and he came and got me and said, “Hi, my name is Jeff,” and the thought of Channing Tatum in 22 Jump Street almost made me lose it. I was calm.nameis.gif

The TTT has more steps than I thought originally.  

I was laid down on a cushy bed. All comfort was soon over.

Four little monitors about one inch wide and half an inch tall were placed on the left side of my body. On my foot, inside of my calf, outside of my upper calf, and the inside of my forearm. Acetylcholine, a neurotransmitter, was then pumped into said little monitors and a first it was hot, then it was itchy and then it felt like 100s of needles. Now pain, I can ignore. It went on for maybe 10 minutes and it was uncomfortable but also pretty whatever. I don’t know if you’ve seen Law Abiding Citizen, but when a man straps you on a table and is playing classical music while putting neurotransmitters on your body, it’s hard not to think he’s going to saw you to death piece by piece. But I haven’t killed or injured his wife or kids so I think Jeff is going to be nice. No revenge job needed.

I then had to breathe deeply in and out in time with a very slow light on a machine that went up and down. I know what you’re thinking, Mariah, it’s breathing, all your doing is breathing. Yes, able-bodied humans, I was. For me, however, that is not fun. I started experiencing presyncope. Presyncope is a state of lightheadedness, muscular weakness, blurred vision, and feeling faint.  I had to do this twice. Jeff was a great technician but at some point, I felt like he was asking too much.  

The next test I had to take a deep breath and then blow into a mouthpiece and keep the pressure gauge at 40 for 15 seconds.  Again, not fun and had to do it twice. #presyncope. My buddy Jeff was blown away by the number of PVCs I was having the entire time… Premature Ventricular Contractions. Everyone has them I just have an abnormal amount on top of POTS and I can feel them and most people can’t. Such is life. That being said doable. All this was doable. Then we did the granddaddy of them all. The actual Tilt Table Test. *Que any and all dramatic music*

So I’m still laying on the torture bed and then Jeff took my blood pressure manually while the lovely Jeanie wrote down everything that was being recorded automatically.  They then traitorously raised the table 70 degrees. Now I’m strapped in but this is not fun. At 122 bpm is when I can feel my blood pressure freak out. We get there quickly. So I said out loud, “Hey guys, I am not having fun”, I wanted their mercy and got nothing.

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Tilt Table Test #IWantMyMom

Taking vitals minutes 1, 2, 5, 10 is standard but I started getting really sick minute 5 so they began taking my blood pressure every thirty seconds. Have you ever held a sand timer? That’s how my body felt. Like granules draining down into a different chamber. To be fair that is what is happening but there’s a heaviness to it. It feels like someone is pouring sand on me while poking my entire body with the ends of uncooked spaghetti. It’s weird but that’s how it feels mmmk? I haven’t stood upright for 10 minutes this whole year so it is the worst I have felt in a while. It took me a while to recover so Jeff and I just hung out in the room and he told me the woes of having three girls and doing their laundry and figuring out whose underwear is whose. After an additional 10 minutes of recovery, he walked me back and I found my mom in the waiting room and I chugged a large Gatorade.

 

I rallied and we took Mayo pictures, got the shuttle to the hotel, and I now have every intention of sleeping off this terrible feeling for the rest of the day.

The worst is over so I’m a happy camper. We start all over again tomorrow at 7:10. LOL at rhymes.

 

(If there are errors, I’ve had a long day.)

Drop it like it’s POTS

Let’s just do this. Let us just all gather on a blog and get on the same page, electronically and figuratively.

I have POTS. I also have pot. I got chronically ill in Portland, Oregon. What do you want from me? I know a guy who knows a guy who knows how to walk into a dispensary.  Skipped drinking alcohol and went STRAIGHT for the gateway drug of choice. It’s CBD so it actually isn’t a big deal (and if you think it is…I don’t freaking care) but I digress, I have POTS. POTS stands for Postural Orthostatic Tachycardia Syndrome. But that is like super hard to keep saying to people so yeah, I have POTS.

“What is POTS?”, you ask. To spare you the vortex of googling POTS, here is the most basic overview. It is an Autonomic Nervous System (ANS) disorder aka dysautonomia.  What does your ANS do? Regulates your involuntary functions. So since mine isn’t having any of it right now it is causing issues with the regulation of heart rate, blood pressure, body temperature, perspiration. Symptoms include fatigue, lightheadedness, feeling faint or passing out (syncope), weakness, migraines, insomnia, being feverishly hot one second and 4 blankets deep with a heating pad the next, and cognitive impairment/brain fog.

So what do you do? What makes it better?pink salt

To be honest, we don’t really know right now.  The only advice I have been given so far is that I should be consuming 3-5 grams of salt a day and 2-4 liters of water a day along with wearing compression stockings and abdominal binder when I get out of bed. These measures help combat low blood volume which contributes to the syndrome’s namesake.  You guys, I HATE SALT. I’ve never liked it. Yes, I use Himalayan salt pills but then having to eat salty food on top of it? Yucky. 

 While you are reading this, your heart is probably in the 60s-70s. When you stand up your heart should go up about 10 beats per minute. Sitting here now, I am at 59 bpm and when I regrettably but inevitably have to get up to try and start my slow morning routine, my heart rate will reach, on average, 150 bpm within the first 15 seconds of standing. Usually when you stand gravity draws blood to your legs and then it circulates normally. When I stand up my blood pools.  My heart says, “hey come back here!” and this signal triggers tachycardia (rapid heart rate) trying to get the blood that is pooling in my legs to carry on as normal. It is at this moment that my blood pressure drops. So I get extremely dizzy, see spots, lose balance and can ultimately faint if I am not careful or if I push myself.

The plot twist is I have Meniere’s Disease which causes tinnitus (ringing in the ears), an uncomfortable fullness in my left ear and extreme episodes of vertigo.

So what do you do? What makes it better?

Well, you drink a crap ton of water and avoid salt. I have had this for 4 years and I have had minimal issues with it since being diagnosed and getting a treatment plan.  So this has been a fun disruption of said treatment plan. It has been three and half months of waking up with high adrenaline (you know that feeling when you are wearing socks and slip on a carpeted stair? All day) and deciding if the POTS symptoms are worse than the crippling vertigo and throwing up that comes with Meniere’s and either taking my Himalayan pink salt pills and chugging water or just chugging water.   

You know what’s great though? Weed. Well CBD. CBD gummies. CBD oils. CBD chocolates.  For the last month or so I’ve been using CBD as a means to make it through my really long days. Did you know when you can’t drive or work or workout or socialize because you feel too sick, the days seem like a week at a time? Did you know there is a thing called too much Netflix? *gasp* I know, I said it. CBD also calms my adrenaline spikes which really really really helps with settling my pounding heart rate. The first time I took CBD it provided me with my first night of sleeping more than two or three hours.  Take drugs, kids.

Here is the amazing part: I got diagnosed very quickly.  It takes anywhere from 11 months to 5 years for most people to get their POTS diagnosis. Patients are usually told they are crazy. I couldn’t imagine being this sick for that long and not have an idea why and not having anyone believe you.  I started feeling sick right before Christmas.  The Friday after Christmas I couldn’t stand up without feeling horrible. It was driving on the highway going 60 mph reaching for a plastic bag to get sick in that I realized I might need to go home for a few hours. I went to the ER asking for an iron infusion January 16th thinking my iron was low and causing anemia-like symptoms. Turns out not drinking alcohol or caffeine, not doing drugs,  having good hemoglobin levels and not being pregnant can lead to being diagnosed within an hour and one saline IV drip in the ER.

The debilitating components of POTS have been compared to COPD and congestive heart failure. At least 25% of POTS patients can’t work at all.  The polls of my Facebook group of over 12,000 potsies would suggest that number should be higher.  Hopefully, when we get to MAYO they can help me get my quality of life back. At the very least I would love to be able to get out of the house on my own and get myself some cake batter frozen yogurt without the worry of fainting while putting on rainbow sprinkles. Although it is pretty sucky, I do have an amazing support system.

I am not sure exactly what God has planned for this. I’m not sure where He wants me or what He wants me to do but I am taking solace in the fact that He knows what He is doing. He knew I would go through this before I was even born. He knows how this piece fits into my life puzzle. The last two weeks I’ve gone through more of the acceptance phase. I have not been sweet little rainbows the whole time. On top of going through a lot emotionally as far as being concerned about my health and my career, did you know your ANS plays into crying? LOL. So if you’re struggling with a disorder of the ANS, you’re out of luck and full of tears. I only recently stopped doing the laying to standing test with my blood pressure/heart rate monitor on every day.  I kept thinking, “I’m not sick. Maybe I’m making this up. I bet my heart is fine now. I can push through the symptoms and just drive and go back to work.” But after 3 and a half months and over 20 doctor visits, guess what. Wouldn’t you know I still super have POTS?

So for the next 15 days and 14 hours or so, I will remain in Portland trying to stay positive while awaiting my trip to Rochester, MN.  
I know there are those moms out there that are going to google this anyway so here is a link to MAYO website as I have not only found it to be concise and informative but it is also where I will be getting treatment.