POTS Support & Info

POTS (Postural Orthostatic Tachycardia Syndrome) & Our Family’s Story (pt.2)

The summer Megan was 10, she became bedridden with her illness.  The infamous “walk” was in early June and I just continued to watch her get sicker and sicker as the summer wore on.  As I mentioned before, I took her back to the pediatric clinic every 7 days.  I kind of played a game with myself..I had to wait 7 days.  I also continued praying desperately for wisdom.  One day, late in the summer, I was driving Megan, once again, to the pediatrician’s.  It was the only thing I knew to do at this point.  As we were driving along, I looked over at Megan and noticed I could see her heart pounding out of her chest.  “Megan, I said, “is your heart pounding?  I can see it beating from here.”  At this point in time, I knew absolutely nothing about blood pressure, but God put it on my heart to ask the nurse to take her blood pressure.  I had no idea why.  And this had never been done in any of our previous visits.

Upon taking her blood pressure, the nurse looked up a bit confused.  She told me that her heart rate was extremely high.  She left the room and went out to speak with the doctor.  When she came back in, Megan had her first laying, sitting and then standing blood pressure read.  Little did I know then, that we would come to live by these readings… The doctor came in and told me that from laying to sitting to standing, her blood pressure continued to drop some, but more important, her heart rate was going from about 65 to 145, just when she stood up.  (In a healthy individual, your heart rate and blood pressure should rise 10 points from laying to sitting and then again from sitting to standing, as a means of getting the blood to the upper part of your body as you become more vertical.)  She said she wanted to refer us to the pediatric cardiologist in town.  Finally, they found something!  Can you believe it took them 5 years to discover this very simple to diagnose issue.  I knew right then and there, that God had directed me to ask for her blood pressure to be taken…without a doubt.

Luckily, we got in to the cardiologist within a few days.  I was hopeful for the first time in years.  Hopeful that maybe there was something to help my very sick daughter.  The cardiologist confirmed that it did appear to be diagnosis of Postural Orthostatic Tachycardia Syndrome, or POTS.  BUT…she did not treat POTS and Megan’s was one of the most severe cases she had seen.  We would have to go to the Mayo Clinic in Rochester, Minnesota to find a doctor that could diagnose and treated POTS and to rule out anything else.  For the first time in a very, very long time, I thought we were going to be able to help her get better.  We were taking her to THE Mayo Clinic.  The best of the best right?

Finally, we would get help for my daughter who just continued to get worse.   As hopeful as I was to get on that plane, I was concerned as to how Megan would handle the trip.  And leaving our two sons at home, to go so far away was tough.  It was so hard to get on that plane and leave them behind.  We took Katie with us, because as her twin, we felt she needed to be there too.  While at the Mayo, Megan underwent a 5 days of tests.  We felt that she was in good hands.  We thought, this is it.  She will get better soon.  At the end of the week, we met with a doctor who confirmed her POTS diagnosis and thankfully assured us that nothing else was wrong with her.  For this, we were so grateful!  The doctor prescribed one medication, that she drink 2 liters a day and eat lots of salty food.  I believed we had found the magic pill that would make her better at last!  We flew home optimistic.

I went right to the pharmacy and filled her prescription for a beta blocker.  We did everything the doctor told us to do.  Week after week, she continued to be just as sick as ever.  Just as weak as ever.  She was still crawling to the bathroom.  She could barely eat anything, due to the nausea and she had to stay in a dark room all day long because light and noise bothered her.  I was calling the Mayo, again on a weekly basis.  Their solution was to have her walk on the treadmill for 15 minutes a day!  Were they joking?  Was this part of a nightmare?  IF SHE COULD WALK FOR 15 MINUTES ON A TREADMILL, I WOULDN’T BE CALLING THE MAYO CLINIC!!!  “Well, you can bring her back if you want” I was told.  BRING HER BACK???  For what?  They had offered us nothing…  Why would we spend all of that money again to bring her back?  Once again we were let down by the “specialists.”  We were devastated and had no idea what to do next.  Apparently, the Mayo Clinic couldn’t help my daughter and not one of the many pediatricians at the clinic in town could either.  The specialists that we had previously seen, had all abandoned us when we didn’t fit inside their specific “box”….what next?

This was such a low point, because I had put such hope in getting help from the Mayo Clinic.  It seemed that we had run out of options as far as traditional medicine.  I was back to the computer, researching and searching for help.  At this point, I had to learn about POTS and try to figure out what to do next.  I just absolutely couldn’t believe that I was still her main medical resource… Me…Untrained in the medical field.

I remember one night shortly thereafter.   All 4 children were asleep.  It had been a particularly difficult day for Megan.  I was standing by my sink having just left from praying over my precious girl.  It was only at this point in the day that I let the tears flow unchecked.  I stood before the mirror crying out to God.  Crying out for Him to help my baby girl.  I felt such overwhelming despair.  It was then that my Heavenly Father gave me a vision of me just falling backwards and of Him standing right there to catch me.  It was as clear as day.  I was reminded that I was not alone on this journey, but that He was ALWAYS there and would never leave me.  Comfort began to replace despair once again.

I knew I had the strength of my heavenly Father to lead me in the right direction.  I had already promised Megan the I “would never, ever give up until I found help” for her.  So my search would continue, knowing He was always by my side.

In Christ Alone,

Kerry, Mama to Katie, Megan, Matthew & Kyle

*We always enjoy reading your comments♥

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12 thoughts on “POTS (Postural Orthostatic Tachycardia Syndrome) & Our Family’s Story (pt.2)

  1. It’s so inspiring to look back and see how faithful God has ALWAYS been. I know you don’t always ‘feel’ like it, but you are such a woman of faith. God has given you a great gift that has come at a huge price. I’m so happy to see Him using you to inspire others that are going through difficult trials. I am overwhelmed with God’s goodness as I read, and remember, all that the Lord has brought you through.
    “Trust in the Lord with all of your heart and lean not on your own understanding, in all of your ways acknowledge Him, and He will direct your path” Proverbs 3:5-6 Love you…………Becky

  2. You have been such an amazing advocate for your children. It is so hard to understand why many doctors would not do the research to figure out what was wrong with your suffering child. It makes me think about what an educator would do if they could not teach a student in one particular way. Would they tell a parent, “Well I tried to teach your child with auditory lessons and they just don’t get it. Good luck with their education.” A teacher would continue to try other strategies to help that student. A good teacher would not give up and leave the parent to educate their child on their own. And so, why is it that so many medical professionals try a few tests and when they can’t find out how to help a patient they wish the parent “luck.” Thankfully for you, you found an amazing doctor and compassionate person who was willing to finally help you and Megan. All doctors and people in this world should be more like him. We should be more compassionate towards others and willing to help those in need.
    do not merely look out for your own personal interests, but also for the interests of others. Philippians 2:4
    Blessings to you and your family.

  3. Dear Sweet Katie,

    My heart aches for you in this illness!! I pray that you will be better soon and if I could take away your pain and put it on myself I would!!! Xoxo ~your sister in Christ~ VIENNA

  4. I was just diagnosis with POTS about 2wks ago. My symptoms are not as bad as your precious daughter. Will pray for you and your family as the Lord lays you on my heart. A song that I feel God used as a reminder to me that I am not alone during this medical journey is “Help Me Find It” by Sidewalk Prophets. This song was like a breath of fresh air to me. Thanks for sharing your journey and may OUR AWESOME God continue to give you hope and healing for your daughter. 🙂

    1. Hi Julie! I am so sorry to hear of your POTS diagnosis, but I bet you are relieved to finally have a name for it at least. We will be adding more POTS posts, so I hope you are following Old Fashioned Girls now! ~Blessings & Prayers!

  5. Hi! I’m 16 years old and have had POTS for 5 1/2 years, but am going through a particularly rough patch right now. It’s refreshing to find some God-fearing POTS patients on the web 😉
    Could you update us on your daughters current condition? What further treatments have you guys ended up trying? We’re trying more natural stuff (here’s my regiment: http://woven139.blogspot.com/2014/04/treating-pots.html ) Would love any tips or advice you could give!
    Most of all, this post was helpful in letting me know I’m not alone…When I read about your daughter having to be in a dark room all day, I totally flipped out, because that’s where I’ve been the past month, since my recent worsening. Was glad to see I wasn’t abnormal 😉
    God Bless you,
    Chelsea

    1. Hi Chelsea! It’s great to hear from you and I look forward to checking out your blog. We will work to update the POTS info on our blog. Right now it’s a work in progress. 🙂 Since we have been dealing with POTS for over 10 years we are blessed to get to talk with people with POTS that friends, and friends of friends connect us with. Right now we are hoping to continue adding helpful info about POTS on our blog to direct people to. In the meantime I would love to connect with you through email.

      ~Megan~

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