The Puddles

Did you know that all 3 of the Puddles have dysautonomia?  It took nearly 10 years to finally get this diagnosis for Ben, and getting Ben this diagnosis has been life changing for our family.

Ben has always had bizarre medical symptoms that couldn’t be explained by any one of his multiple other medical problems.  We eventually started to call this “Ben-itis” when any thing medically unexplainable would happen. 

Like . . . Ben would start vomiting one day and couldn’t stop for months.  He could eat.  He could drink.  He would feel better for a while after he threw up, but nothing went down without coming back up.   

Or . . . he would get so dizzy that he couldn’t get out of bed.  Again, this would go on for months.

Or . . . he would run a fever.  Randomly. 

Or . . . he ended up wearing a boot on his foot for almost three months because we walked too much during a weekend trip.  And then he hurt his foot again the year after.  And then the year after that.  The podiatrist never could figure out why it kept happening.

Or . . . he had blood pressure that was both too high and too low at the same time.  130/54.  Yup.  The doctors had a hard time dealing with that one.

Or . . .  or . . . or . . . 

What do you think happens to a young boy during these “episodes”?  He misses school.  He’s stays in bed for endless days.  No friends.  Not much social life.  

Each time something would happen that couldn’t be explained by the routine specialists in his life (cardiologist, nephrologist, and gastroenterologist) we would have to take him to a new specialist.  Try ENT? Try A/I? Try this neurologist? Try this clinic?  

These mysterious illnesses stumped us as parents.  Seeing your child miserable is a strong motivating factor, so we, of course, did all of the suggested follow ups.  The scenario would go something like this:

General Doctor 1 would do a preliminary workup and say, “I’m not sure what’s going on, but these symptoms could be indicative of something with his heart or kidneys so call cardiology and/or renal next.”

Specialist Doctor 2 and 3 would run the standard tests (cardiac echo, EKG, blood work) and declare that it wasn’t his heart or kidneys.  At least one of the three doctors would make a suggestion on what we should do next.  

We would then follow up with New Specialist Doctor 4.  That doctor would order a lot of testing.  We would follow through with the testing.  Go back for followup.  

Every doctor would then say pretty much the same thing:

“The test came back normal” or “the test is clearly indicative that he has something wrong.”  “But we don’t know why. There is nothing more that I can do.” 

Or some version of the same story.  We would leave the office/hospital/clinic.  I would go to the parking lot. Put headphones on Ben and give him a movie to watch. And then I would call Chris and cry.  Or call my mom and cry.  Chris and I would declare we are done with the testing and doctors.  No we weren’t going to go back for another followup in a year. No we weren’t willing to do another test, but this time it was more invasive for Ben.  No. No. No.

This seriously happened so many times.  (And out of fairness to these doctors, most of them were at least brave enough to say that they didn’t have all of the answers and that they had hit a wall when it came to their medical knowledge. I respect that.)

At one point we just starting working with his pediatrician and therapist to help Ben figure out how to live as normal of a life as possible even though he felt like “crap.” 

You are going to feel like crap, Ben.  So how can we figure out how to keep you in school even if you feel bad.  What does that look like? 

For most of us, if we get sick, we go home, take meds, and rest.   Then we go back to life.  But if you feel bad every.single.day. you can’t follow that regimen.  Or you will never get out of bed.

Until . . .

We met Dr. Ramos, who was the first to mention dysautonomia. He couldn’t treat it, but he thought maybe that is what was going on with Ben.  Then we talked to Aunt Sarah (½ of Team Wallace who are brilliant medical professionals), Chris’ sister.  Then we spoke with Ben’s pediatrician.  Ok.  Medical professionals were starting to coalesce with agreement.  No one still knew what to do.  But as his pediatrician said, “If it walks like a duck and talks like a duck, then it’s a duck.” 

Then we found Dr. Burkholder.  The first dysautonomia doctor who was willing to treat Ben.  Several others refused to take Ben on as a patient because he was too medically complicated or their clinic wasn’t taking new patients. He saw and diagnosed all three with dysautonomia.  Ben started having weekly IV infusions.  Dr. Burkholder told us all about exercise and salt intake and drinking water with electrolytes.  

And do you know what happened?  Ben went a year without any major flare ups. None.  No missing school for a month, etc. 

Well then, Dr. Burkholder left the practice and the other neurologists weren’t comfortable seeing Ben.  So we went looking for another dysautonomia doctor.  

And then, another miracle occurred . . . all three kids got into UT dysautonomia clinic with Dr. Ian Butler.  The absolute best dysautonomia doctor EVER. (He had even trained Dr. Burkholder.) 

Dr. Butler was the first doctor to do any diagnostic testing on the Puddles.  All three went through tilt table testing.  And what do you know?  They officially all had a version of dysautonomia. 

Madie and Ben have P.O.T.S. (Postural orthostatic tachycardia syndrome).  

And Ainsley won the award for worst case of dysautonomia in the family.   Click here for Ainsley’s medical story.  

Now we know.

When we know better, we do better.  So we have reached a good point in the world of medical drama.  We have a good idea of how to take care of ourselves in order to not have flares.  We can know when we are about to _____ (faint, have a seizure, vomit) so we ________ (lay down, drink gatorade, consume large amount of salty foods).  

Of course, dysautonomia is not as widely known by the medical world.  There are not very many doctors who specialize in it or are willing to tackle a patient who has it.  All of the Puddles have come or are coming to the end of their pediatric medical world and it is time to move to the world of adult doctors.  And so far, we haven’t found ANY adult dysautonomia doctor in our area.  I mean we live within an hour’s drive of the largest medical center in the world.  And so far we haven’t found anyone to take over their care.  

But still . . . we know what the problem is, and we know how to advocate for their care.  And now dysautonomia is getting more and more attention. Why?  Long-covid.  I hate that more and more people are being diagnosed with it dysautonomia, but perhaps with more patients there will be more research.  Which will lead to more discoveries.  Which will lead to more treatments.  Which will hopefully lead to a cure.  

At least that it what I pray for.

It is Dysautonomia Awareness Month. So I write our story to share with others so that more people will more easily recognize the term “dysautonomia”. It is isn’t rare. It is really isn’t new. Some people are more affected by their syndrome than others. There isn’t a cure.

But for us, the Lake/Puddles Team, we have finally found some medical peace. We finally have some doctors in our corner who understand what is going on. And after so many years of frustration, that is a very hopeful feeling.