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POTS UPDATE ON SARAH

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A great deal of progress has been made since I last posted two months ago about Sarah’s POTS’ saga.  The purpose of sharing our journey is to get the word out about POTS (Postural Orthostatic Tachycardia Syndrome) and dysautonomia.  We also want to share any treatments that have worked for Sarah in hopes they may help others on this journey.

First of all, we’re very happy to have found an Electrophysiologist (which is a subspeciality of cardiology) who treats POTS.  This new doctor is only about an hour from our house so we’re very glad to have found him.  We met with him for the first time in February with subdued hope that he would be able to treat Sarah.  So far, after seeing him only twice and following his recommendations, Sarah is so much better!  Let me explain…

During our first appointment, this doctor informed us that she was drinking way too much water.  Whoa!  Wait a minute!  Everything we read and have been told up to this point (for the last six months) has instructed POTS patients to increase water intake!  Of course, she has been increasing her salt intake also during this time, but apparently by drinking so much water, she was simply flushing it right out of her system.  He also told her to begin drinking Gatorade because she needs the electrolytes.  This was revolutionary for Sarah!

We immediately stocked up on Gatorade but also found an organic sports drink on Amazon that is on order, along with the salt tablets that the doctor suggested.  Now, the Gatorade and decrease in water alone have not been miracle cures; however, they have single handedly aided more in her recovery than anything else aside from the Florinef!

She has had far less fatigue and her stamina has increased incredibly so.  She is still experiencing heart palpitations and the doctor has ordered a 24 hour heart monitor for her to wear for two weeks.  We should receive that any day now.  I think that will tell the doctor in greater detail exactly what she is experiencing.

Her former cardiologist ordered a post-event heart monitor but it only captured tiny snippets of cardiac information, so I feel this will be far more telling.  Sarah is off the Atenolol, which was disastrous.

Also, another disastrous drug for Sarah was Corlanor, which the new doctor prescribed.  She only took one dose, but its effects almost sent her to the ER.  We had a very scary few days.  As with any drug, some work for some patients and not for others.

We met with the doctor a few days after the bad episode and were apprehensive that he would simply write out a new script for another potentially disastrous drug. We prayed he would have wisdom to know how to treat our Sarah and I believe he did.  That was when he ordered the heart monitor.  I am thankful that he is digging deeper to seek to understand rather than gloss over her symptoms.

Before meeting with the Electrophysiologist, I prepared a cover letter to the doctor along with Sarah’s medical history and recent lab work results.  In the letter, I stressed the importance of obtaining treatment for our daughter and if he felt that he could not treat POTS, to please let us know prior to her appointment.  I stated that we did not wish to waste his time, nor ours.  We’ve seen enough doctors in the last six months and cannot afford to run in any more circles than absolutely necessary.  Included in her medical history was a chart with all of her diagnostic testing she’s had done (CT scans, etc.) so that he could clearly see the larger picture.  I believe the more information any doctor has (especially a specialist), he is in a better position to accurately treat the patient.  (not to mention, this prevents redundancy)  Yes, we have requested medical records from previous doctors, however, we have become keenly aware that often times, things fall through the cracks.  So, we take it upon ourselves, in the interest of trying to obtain effective and thorough treatment, to deliver as much information as possible.

So, I said all of that to say … After the doctor read through our little package that preceded our visit, I’m certain he understood the importance of attempting to find treatment.  I do believe Sarah is finally in competent hands…finally!  Her last cardiologist flat out told her that he could not treat her for POTS, which is why we had to find another doctor.  So many doctors, even specialists, know very little, if anything about POTS.  Since our family has never encountered a situation like this, it has been very frustrating.  I don’t think one could truly understand unless you walked through it.

POTS is not necessarily a common illness, however it is estimated that between one million and three million people in the U.S. have it!  Wow.  Sadly, it is often misdiagnosed or not diagnosed at all. It has been called the “Invisible illness”.  If you looked at my daughter, you would see a beautiful young lady, inside and out.  She’s lovely.  Sarah is our only daughter and she’s so very special to her mom and dad!  A priceless gift!  We always tell her she’s so beautiful!  (because she is, even if she rolls her eyes, understanding that her parents are naturally biased!)  But, to look at her, you would think she is just fine.  However, POTS is a dysfunction of the autonomic (things that function on their own) nervous system.  So, all these functions are happening on the inside of the neurons and axons … all invisible to the eye.

In reality and every day life for Sarah, there are lots of things happening!  When she gets up, she feels dizzy sometimes.  She’s often nauseated because the digestive system is also impacted by POTS.  She eats gluten and dairy free and is very particular about what she eats, but problems still persist.

The fatigue has improved with the advent of Gatorade but she still has limitations.  Sleep is a big problem.  Perhaps the greatest problem at the moment is the heart palpitations and sometimes heart racing.  Those are scary symptoms for anyone, let alone an 18 year old.

Lately her joints and muscles have really been bothering her and per the new doctor’s advice, she will see a rheumatologist in May.  Often she will use essential oils on her joints to ease the pain.

I’ve only outlined the most prominent symptoms at the moment, there are seemingly countless others.  There is virtually no part of the body that POTS does not affect.  It’s all very mysterious in a way, like a maddening puzzle to solve.

We are, however, very encouraged these days to be on a good path after so many dark days!

I just want to encourage you to never give up hope if you or someone you know is sick.  Keep knocking on doctor’s doors until you find someone who knows something!  I used to think doctors were experts in all things.  Nothing could be further from the truth.  Often through this ordeal, I have felt like they must be handing out medical degrees these days!  There are excellent doctors out there … it just may require a great deal of work and patience to connect with them!  But don’t give up!

My belief is that God is healing our Sarah bit by bit every day and that one day, she will walk out of this phase – completely healed!  Some days are dark.  Some days give us such hope.  But no matter what we see, our faith encourages our hearts to keep putting one foot in front of the other and press on!  Our miracle is just around the corner!

 

 

{Disclaimer:  I am not a doctor.  Nor do I play one on t.v.  Any medical advice is for informational purposes only.  Do research and seek out professional help for your particular situation.}

 

 

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Being a Healthcare Advocate

An advocate is one who stands in place for another, who fights for another.

I am Sarah’s greatest health advocate.  Sarah is my 18 year old daughter who was recently diagnosed with POTS.  (I wrote a lengthy post on this that you can check out if you’d like.)

I suppose being a mother predisposes one to being an advocate.  After all, no one wants what’s best for their child more than their mother.  I have become a “Mama Grisly Bear” when it comes to my daughter.  My further training in this regard came in recent years, caring for my aging father.  He particularly has needed an advocate during doctor visits and his hospitalization several years ago when he survived sepsis.  I told him then that I would always be his best advocate and I meant it.  I still am.

In recent months my role as “Health advocate” has expanded to include my teenage daughter, Sarah, who has seen more specialists than one can imagine over the last year.

Last October I became convinced that my daughter’s symptoms matched those of patients with Lyme disease.  In fact, I was pretty sure she had it.  Of course, I have no formal medical training (unless you count being a nurse’s daughter).  🙂  I read articles online and really researched this.  I spoke with friends about it and they, too, were fairly convinced.

So, when we met with Sarah’s new primary care doctor, we strongly requested her being tested for Lyme.  And not just any old test.  We had read that the Western Blot test was the most accurate and that was what we wanted.

Not only did her PC order the Western Blot test, but also ordered another Leukemia round of blood tests as well as any markers in her blood indicating other diseases.  We were glad she was so proactive in ordering these tests but were sent on another emotional roller coaster while we awaited the results once more.  Thankfully, all results were negative!

Because Sarah has seen so many specialists, we always type up a “Medical History” information sheet, which is typically several pages long and includes all recent MRI’s and CAT scans and other diagnostic testing.  I also photocopy all recent lab work results so they know instantly what she’s already been tested for at a glance.

I’m sure some smile at this and perhaps think my efforts are “over the top”, but most thank me wholeheartedly for doing this.  It eliminates many questions and saves their time so they can concentrate on the bigger picture.  It also means we do not have to answer the same questions over and over again, specialist to specialist visit.

Part of being a patient advocate is steering the treatment in the direction you are most comfortable.  Example: Our family tries to eat very healthy and veers toward a more holistic path when possible.  We’re not opposed to medications, but only when necessary and if a supplement couldn’t work just as well.  I am reminded of this because several doctors have suggested birth control for Sarah as a treatment for a couple different issues (that have nothing to do with birth control itself actually).  Sarah has done some research into this drug and is adamantly opposed to using it.  I have to say that I am not a fan either and wouldn’t want that necessarily for her.  My mother died at age 53 of breast cancer and studies have shown increased estrogen levels lead to breast cancer.

Each time we have politely declined using it, both doctors were certainly understanding, which we appreciated.  (I had a doctor years ago discharge me as his patient because I refused to go on a steroid because we were trying to conceive at the time.  So some doctors believe it is their way or the highway, apparently.)

Side note:  Sarah wanted to be a midwife for a while and during that time, educated herself greatly in every aspect.  She even was able to attend a home birth, which was a memorable experience for her.

So, you might say I am a Captain of the Healthcare Sea on my daughter’s behalf, in a way.  Obviously, my daughter’s care is ultimately up to her doctors, but if I believe a leaf needs turned over, I will advocate for it.  Steering is definitely a part of being a good advocate.  So is educating yourself on the symptoms and known diagnosis.  Don’t be afraid to speak up.  In this case, it’s my daughter’s body that we are dealing with.  She may be a stranger to the specialist, but to me, she is a huge part of my world!  And my heart.

At the end of the day, I must know within myself that I’ve exhausted every avenue in an attempt to restore my daughter’s health.  I feel like I’m fighting a battle for her wellness and recovery.   One on one time with each doctor is very limited, so having medical history documented and any questions written down is vital for a successful visit.  It also eliminates “brain fog” during the visit.  It’s an amazing thing that happens when you’re finally face to face with the doctor, often after months of waiting to get in, and then all pertinent questions fly out the window.  Another thing that happens is, whatever the doctor says during the visit winds up becoming a “brain blur” afterward.  I recommend writing notes, asking questions and later documenting the visit for clarity.

I am present during every doctor visit my daughter has, even now that she has turned 18.  She’ll say that sometimes I answer the doctor’s questions and that she wished I would allow her time to do that.  So, I’ve scaled back and attempted to allow her to do most of the talking when possible.  Often what happens is that she experiences POTS “brain fog” and goes on bunny trails in response to the doctor’s questions, which can be confusing and time consuming.  And each visit is so key to Sarah’s recovery that I feel like much is at stake and we must make the most of our time.  So, I speak up when I think it’s useful to the doctor’s understanding of her symptoms.  Sarah thanks me.  Most of the time.  😉

Follow up is another major component of advocacy.  It has been amazing to me the degree that I have had to involve myself and relentless messages to doctor’s offices in order to obtain lab or other diagnostic testing results.  It matters to no one more than you and your family.  Why wouldn’t you follow up?  If the doctor says the lab results should be ready in three days.  Guess who’s calling in three days?  Me!  The sooner we have the results, the sooner treatment and recovery can begin.

Have you ever had to be a staunch advocate for a loved one who is ill?  If so, can you offer any sage words of advice?

 

{Medical Disclaimer:  I am not a doctor.  I don’t even play one on t.v.  I am a mom.  A very loving and dedicated one at that.  The information contained in this blog and any other article on my page are based on our experiences, what we’ve read and our opinions or understanding of POTS.  Please consult a licensed physician for advice and conduct extensive research on your own.}

 

 

 

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P.O.T.S. & Our Struggle

You may ask, “What is POTS?”  It’s an acronym for Postural Orthostatic Tachycardia Syndrome, a disorder of the autonomic nervous system.  This medical term was coined in 1993, however has been around for hundreds of years under other names.

Our world changed last August when our daughter, Sarah, (17 at the time) began experiencing seemingly random, debilitating symptoms.  Her symptoms began as daily migraines, feeling like she’d pass out, severe fatigue, sleep disturbances, joint pain, muscle twitches and g.i. issues.  They have now evolved into cardiac symptoms, such as heart palpitations and heart racing even when at rest, brain fog, memory issues, slower speech and being primarily home bound.

Before I go any further, let me back up the train to state what I think were contributing factors to our daughter contracting POTS.  If you’ve read my blog, you may recall our family was hit by a drunk driver back in May 2014.  We were involved in a traumatic 4 car accident at a red light and rear ended at about 70 mph.  We all endured four months of physical therapy subsequently.

Sarah had an appendectomy in February 2015 and then had all four wisdom teeth extracted in August 2015.  We also moved five states away and Sarah was under pressure to perform well on her ACT test.  It has been said that surgery and major stress on the body can be triggers.  I definitely believe this to be true.

She’d been seeing her primary care doctor regularly post appendectomy, primarily to address her raised white blood cell counts, who referred us to a hematologist to further investigate.  We saw the hematologist a number of times, who referred us to a neurologist concerning Sarah’s massive headaches.  During this time, she was tested for Leukemia, Lymphoma and other markers in the blood that may indicate disease.  I cannot tell you the intense stress our family endured waiting for the blood results when a hematologist is concerned about potentially deadly diseases for your child.  Our stress level was off the charts.  We are strong believers in God’s healing power and the fact that He walks beside us, but our faith was greatly tested and tried during these hours.  It wouldn’t be the last time either.

Praise the Lord, those tests came back negative!!  While we were greatly relieved, it still remained a mystery as to why Sarah’s white blood cell counts and lymphocytes were elevated beyond a normal range.  Our hearts and prayers go out to the parents whose children are battling cancer and other diseases.  It is the worst feeling in the world for your child to be sick and you can’t do anything to make him/her better.  But pray.  And pray we did.  Sarah is on so many prayer lists at so many churches.  Our friends and family have remained faithful in prayer on her behalf and for that, we are ever grateful.  We are convinced that it is due to their prayers that we were sustained during the darkest of hours.

In September 2015, the neurologist diagnosed Sarah with POTS and prescribed Florinef.  As with any new diagnosis, we were overwhelmed with questions.  So, we studied.  Between Sarah and I, I’m pretty sure we could write a small book.  Sarah is a bright girl and curious by nature, so she immersed herself in articles online.

The Florinef helped a great deal in the beginning, but by November and December, Sarah’s symptoms were worsening by the day it seemed.   I felt like I’d lost my baby girl.  Sarah turned 18 in November and could hardly make it out of bed for dinner.  This was our new reality.

She would have begun attending the community college in September 2015 but was not well enough to do so.  She wants to become a nurse, which I think suits her personality and gifts very well.  We’re looking forward to the day she can begin classes.

We switched primary care doctors after we received news that her former doctor was no longer participating with any insurance.  She saw the new PC in early November, who referred us to a GI doctor for her stomach issues as well as a cardiologist for the racing heart symptoms.  By now, our heads are just spinning because we’ve seen more doctors in 2015 than imaginable!

We saw the GI doctor who recommended a colonoscopy and upper endoscopy, so she had that done at the end of November.  The results were very good.

Side note:  Sarah eats a very clean diet and is very disciplined.  She’ll be the first to say not to applaud her too much on that note because she does so more so out of necessity than discipline.  She knows what upsets her stomach and which foods sit well and has learned over the years to adjust accordingly.  Sarah primarily drinks water and occasionally herbal tea.

We finally saw the cardiologist (took a while to get in with this pediatric cardiologist) last week.  I finally feel like we are on a good path!!  Praise the Lord for that!  Because Sarah’s symptoms revolve greatly around the tachycardia, I believe the cardiologist is in the best position to treat her at the moment.  He prescribed Atenolol (which, ironically, my father also takes…for other reasons, of course) to regulate her heart and after being on that for 6 days now, I have to say, it has helped greatly!  She is able to get out of the bed more and I feel like we’re getting our Sarah back.  It isn’t a miracle drug, however.  She still feels the extreme fatigue and other symptoms, but it has helped the tachycardia (rapid heart rate).

Sarah is still unable to do much of anything, aside from lay around and fix her meals.  Part of the treatment for POTS is to increase salt intake and water consumption.  So, she does that.  Even prior to the diagnosis, she drank a lot of water.  She drinks probably 2-3 times the amount she used to.  The reason for the larger salt intake is it helps to increase blood volume and blood pressure, which aids in treating the symptoms.  The underlying issue with POTS is lack of blood flow, which is why she often feels like she will pass out.  (lack of blood flow to the brain)  This is also why she feels so poorly after eating.  Apparently, after you eat, your system is hard at work digesting and diverts extra blood flow to the digestive system.  This is terrible for POTS patients as they need all the blood flow they can get under normal circumstances.  Sarah would have to promptly lay down after eating and fight not to pass out.  As if the symptoms could not worsen, a woman’s monthly cycle exacerbates  the situation.  Again, it all goes back to blood flow and its affects on the entire body.

Because POTS is a disease of the autonomic nervous system, it affects all the body’s systems one cannot control, such as: sleep, heart rate, digestion, respiratory, etc.  In the beginning, we questioned how Sarah could be experiencing the myriad of symptoms she was.  I must admit, I often thought she was a hypochondriac and we tired of hearing about all of her woes.  What a blessing it was to receive the diagnosis, so then we could work toward treatment and hopefully her full recovery one day.  We have heard that others with this illness go undiagnosed for years and that is heartbreaking.

Where are we now?

The cardiologist referred Sarah for physical therapy, which was a godsend!  Physical exercise is very useful.  Strengthening of abdominal and leg muscles is beneficial to the POTS patient because it helps the body effectively and efficiently pump blood upward toward the brain.

Sarah begins meeting with a sports therapist this week and we will keep you posted.  Sadly, she strained her wrist while exercising last week and has it wrapped in an ace bandage, applies Arnicare gel regularly and soaks it in Epsom salt.  Hopefully, she’ll be okay to do the therapy.

One of Sarah’s POTS’ symptoms is “exercise intolerance” and that means that if she exercises, it can wipe her out for days afterward.  It’s awful.  Even a short walk exhausts her for days.  So, the idea with the therapy is to build her tolerance slowly.

I plan on writing further about POTS and how Sarah is doing, so check back for updates if you’d like.  Do you know anyone with POTS?  They say over 500,000 Americans have it.  Not sure how accurate that really is since often it goes undiagnosed.  Many doctors have no clue as to what it is.  How can one expect a diagnosis if they have no knowledge of it?

We covet your prayers for Sarah – that the Lord will touch her body and restore her health.

We know God has great, big plans for her!

 

{Medical Disclaimer:  I am not a doctor.  I don’t even play one on t.v.  I am a mom.  A very loving and dedicated one at that.  The information contained in this blog and any other article on my page are based on our experiences, what we’ve read and our opinions or understanding of POTS.  Please consult a licensed physician for advice and conduct extensive research on your own.}

 

 

 

 

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