POTS (Postural Orthostatic Tachycardia Syndrome) & Our Family’s Story (pt. 1)

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california trip! 279

My girls and I have felt called to share our journey of dealing with chronic, debilitating illness on a daily, actually hour by hour basis, for the past 11 years as a means of reaching out and hopefully helping others in the same or similar situations.  You see, both of my daughters, who are now 16, have POTS, Postural Orthostaic Tachcardia Syndrome  (I will explain POTS in more detail as we go on).  It took years to get a diagnosis for this rare illness.  It has robbed one of my daughters of her childhood and one of her teen years.  But through it all, we have seen God’s hand and felt His strength, every step of the way.  We have known Him in ways we never imagined and I believe that we are stronger through Him, than we ever imagined possible.   By sharing our journey, our only hope is to help and encourage others and to give our Lord all the glory for seeing us through.  This will have to occur in a series of postings.  It has been much too long of a journey for one post.

Our story began the fall that my twin girls were 5.  Our hummingbird daughter, Megan, had just advanced to a higher level in gymnastics.  Thus her classes were longer.  Right away we noticed that she would be so wiped out after class, she would fall asleep on the couch as soon as we got home and sleep for hours.  Then she began feeling really terrible after class, sometimes vomiting and being wiped out for longer and longer stretches of time.  We began our doctor journey.  Before class I made sure she had eaten enough carbohydrates and protein to give her enough energy to make it through the class.  We made her take breaks every 15 minutes to drink a sports drink and rest a bit.  She just continued to feel worse and worse after class.  So, we decided to put her in a private class so she could a shorter lesson and rest more during her class.  Still, she would be so sick after her gymnastics lesson, that after doing this twice a week for about 3 months, she came to me and said it just wasn’t worth continuing in the sport she loved and had been involved in since she was three, if she was going to feel so sick afterwards and take days to recover.  When she quit gymnastics it was a heart breaker.  You see, we called her our little hummingbird for a reason, she never sat still.  Now she was beginning to spend more and more time lying on the couch feeling horrible:weak, nauseous, incredibly drained…  Something was wrong, but her pediatrician had no idea what it was.

At this point, any physical activity at all made her sick.  If she had friends over, played outside, rode her bike, went to a birthday party, attended AWANA’S, anything where she was even just the slightest bit active, she would be so weak and sick afterwards it was scary.  We visited every single pediatrician at the clinic we were using.  Not a single doctor had any idea why my once energetic daughter could now no longer even go to a friend’s house without becoming very, very sick.  And the worst part was, they did not seem to care enough to try and dig any deeper to find out.  I realized we were going to be on our own with this illness, quite early on.

About 10 months in to this, we began traveling 3 hours over the mountains to a larger city to see specialists.  We took her to 2 different “speciality” hospitals; one a teaching hospital and one a children’s hospital.  At first, each specialist would assure us they could help, but after testing proved that she didn’t have what they specialized in, we were dropped…  No more appointments, call backs or even a referral to a different specialist.  We chose specialists, based on my research and what I thought could potentially be the cause of her illness.  She was “diagnosed” with many things at one point or another: Ketotic Hypo Glycemia, Psychological Issues, Allergies, Endocrine issues.  I don’t remember all of the things the specialists thought she had at one point or another.  She was hospitalized about 3 times a year when I would finally insist, because I was so scared and she was so sick.  She would always be “severely dehydrated” when she was admitted and it would take 72 hours on IV fluids to get her back in to the normal range.  These hospitalizations would help some to get her out of what we called “really bad crashes.”

3 years into this, the summer she was 8, things would get even worse.  One sunny afternoon in late May, I took our newborn, 2 year old and the girls on a short walk. It was too sunny to stay indoors after a long winter.  I monitored how Megan was feeling the entire way and wouldn’t let her ride her bike or run.  We didn’t go far.  She seemed okay.  We got back home and she still seemed okay.  But a couple of hours later she completely crashed.  This day will forever be etched in my mind, because it was such a huge turning point in her illness.  She became so weak, fatigued and nauseous that she was completely bedridden.  This went on, week after week after week.  I would wait 7 days and then take her back in to the pediatricians office, pushing her in her brothers stroller because she was too weak to walk.  What did I get from the many pediatricians we saw…NOTHING!  Week after week, NOTHING.  They would just send us home with some flimsy diagnosis…a virus, allergies, all in her head!  I wanted to scream!  Why didn’t they want to help us?  I thought that was what doctors were for.  But it wasn’t a sniffly nose, sore throat or ear infection, so they did NOTHING!  This went on for 8 weeks!

I will never forget the night I went in to her room after she was asleep to pray over her, as was often my routine.  With tears streaming down my face, I knew I had to release her to God, fully and completely.  I had to release her, because I really believed there was a chance that He would be calling my baby girl home.  It had been easy to say I had given my 4 children to the Lord, but when I was really called to do so with all of my heart, it was one of the most painful nights of my life.  Yet, I felt comfort too.  Comfort in knowing that no matter how much I loved her, God loved her so much more.  Comfort because I believe that God can take any situation and use it for good, for His glory.  Comfort because I believe that Heaven is our true home.

At this point, I actually thought that my baby girl was perhaps dying…  She just became weaker and weaker.  She had to crawl to the bathroom.  I spent hours online trying to research what could possibly be wrong with her and where I could possibly take her for help.  I cried out to God for healing, for strength to get through each day, for His wisdom to find out how to get my hummingbird girl help.

In my next posting, I will continue the story of how we finally got a diagnosis.  Just writing this has brought back so many painful memories.  Five years of not knowing what was wrong with her and watching her get worse and worse and worse.

In Christ Alone,

Kerry, Mama to Megan, Katie and their 2 brothers, Matthew and Kyle

california trip! 276

*Chalk Paths by Eric Ravilious

*Hummingbird photograph by Tony Northrup

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