The Puddles

It has been awhile since I’ve posted anything regarding Ben’s health status.  So since I have a lot of “time” on my hands.  I thought I would share how Ben is doing.

First of all, Ben is currently doing well.

Two years ago, Ben had his third open heart surgery.  I posted a lot about that.   One year ago, Ben had a Melody valve placed.  Each time the goal for the surgeries was to solve all of the variety of symptoms that he had been having.  And each time it solved some issues, but not all.

During the last three years Ben has had a series of problematic symptoms that have caused him numerous health issues and a lot of missed days of school (last year he had over 50 absent days and that doesn’t count the partial days where he either had a doctor’s visit or went home early because he didn’t feel good).  High blood pressure, low blood pressure, fatigue, vomiting, diarrhea, migraines, dizziness, low muscle tone, chest pain, etc., etc., etc.

When you are diagnosed with high blood pressure, kidney disease, congenital heart disease, severe acid reflux, and dysautonomia (just to name a few).  The symptoms can point to any and all of these diagnoses.  So for the last three years, we have gone through one specialist after another, one test after another, one medication after another to try and solve all his health issues.  These issues aren’t like a rash.  They interfere significantly with his daily life.

After Ben’s last valve placement the cardiologist gave us a good report stating that it looked like the valve had solved the leak for the moment. So since Ben’s heart was in a good place, we decided to tackle Ben’s stomach issues.  He has been randomly throwing up and struggling with severe heart burn since he was born, but it truly became a problem went he went to kindergarten and he kept getting sent home because he was throwing up in school.   Over the years, we have increased his meds, added meds, completed a lot of diagnostic testing, and he continued to get worse.  So last summer I made an appointment with a doctor who had a reputation for looking at alternative ways of dealing with GI issues.  At that point, we felt like we had exhausted traditional medicine.  As of last spring, the last straw for us was when we had several doctors who said, “We know he is having the symptoms. Our tests show that the issues are there, but we have no idea why or how to solve it.”  So my thought was, talking to this doctor can’t hurt.  Chris finally conceded to going to this doctor.  He does not like “alternative” medicine.  But the poor boy had been throwing up almost every day that summer and fall.  So why not try something new?

After reviewing Ben’s long medical history.  She ordered several test.  The only test that was invasive was blood work.   After the testing, we met with her.  She said Ben was sensitive to a dozen different foods.  He wasn’t having an anaphylactic reaction, but his immune system was still attacking the food in a different way.  It was a slow buildup that would attack the lining of his esophagus, stomach, and intestines.  So Ben started a new diet.   He is allergic to the following: Clams (gross), eggs, milk, cheese, honey, peanuts, soybean, apple, bananas, coconut, barley, bran, corn, gluten, malt, rye, and wheat.  This diet is really hard.  Gluten-free and milk-free isn’t so bad.  Add corn-free, soy-free, and coconut-free and its like climbing Mount Everest without a sherpa.   I didn’t know what to do.  But its just a diet, right?  If it helps, then it is totally worth it.

So then came the hard part . . . sharing this information with his other doctors.  Our pediatrician is awesome, but she won’t recommend anything that doesn’t have peer-reviewed research backing it up. It is one of the reasons we like her so much.  But so far, she and Ben’s other 1000 doctors hadn’t found a solution to dealing with Ben’s GI problems.  So we confessed.  I got in trouble. She called this other doctor a quack.  I just kept assuring her that this wasn’t invasive and that it was only a diet in the end.  And better yet . . . after a month of not eating any of these foods, he stopped throwing up.  He was actually feeling better.

A few days later I get a phone call from the pediatrician’s office.  Apparently Ben had been on our pediatrician’s mind and she woke up one night thinking about Ben’s GI issues and all of the recent developments.  She then called Ben’s GI doctor and discussed her idea with him.  The nurse was calling to give us an update.  Both our pediatrician and the GI doctor thought Ben might have a rare disease called EOE.  And that they had gotten an appointment with Ben to see an allergist at TCH that specialized in this type of disease.

So this quack doctor may have been onto something ;)!  So a visit with the allergist, GI doctor, and kidney doctor led us to finally deciding to allow the GI doctor to do an endoscopy, patch testing (a different kind of allergy testing), and some more blood work. After months of these numerous visits and testing, the end result is . . . Ben is allergic to the foods listed above plus chicken, beef, and rice. An additional patch testing called T.R.U.E. test showed he is allergic to gold, fragrance, and other chemicals I can’t even name. This was terribly overwhelming.  The endoscopy showed that Ben was showing changes to the basal layer of his stomach and esophagus. He also showed a large amount of bile in his stomach.  So the doctor could see that damage was occurring to his stomach and esophagus, but he cannot tell what is causing all of the damage.   The biopsies did not show that he had EOE.  The allergist said that all of the testing must have been false positives, that she didn’t know why or what was causing any of his issues and she offered no solution.  I have never felt so helpless. It was all I could do to walk with Ben to the car without crying.

As soon as I got into the car, I just started crying. Ben reached over and patted my arm and told me that it was going to be ok. Here is this kid who has been through so much and he is comforting me!!! That made me cry even more.  I rarely cry.  I rarely get upset.  But after everything we had been through and especially what Ben had been through, when a doctor says, “Sorry. I can’t help you,” I just want to run away and never come back again. We have had this happen to us so many times. “Sorry. Clearly he has problems.  The tests show it.  But we don’t know why.  We don’t know what to do to fix it. And we have no plan on how to make this better.  No need for a follow-up.  Go back to your pediatrician.”

Are you kidding me?  No they are not.  This time both our GI and pediatrician were upset with the allergist.  They both said that despite what the allergist said Ben needed to continue the diet and that they would continue seeking help from their colleagues to get to the bottom of Ben’s symptoms.

Meanwhile, Ben went back to his neurologist to deal with his migraines.  So we’ve added a migraine preventative med to his regimen.  That doctor believes that he might have a mild connective tissue disorder.  So Ben spit into a cup for DNA testing.  And he will have an EEG for 24 hours to monitor his brain.  Sounds like fun, right?

And . . . Ben broke his foot again. Same bone as last year, but on the other foot.  Seriously, he’s been in a boot for three springs in a row.  At least with this one, we can chalk it up to him being a 13 year old boy!   As the doctor said, at least he feels well enough to run around and play.

To top it all off . . . Ben has been doing cardiac rehab this year at TIRR. So twice a week, we would go to rehab in the morning.  After the diet changes and his broken foot, he has been losing so much weight and muscle tone that we have now having to give him vegan protein smoothies every day.

So here’s the final result:

• Cardiologist – increased leaking from pulmonary valve but as of last visit the leak had stabilized to a moderate level.
• Neurologist – diagnosed with migraines and prescribed new meds for prevention. is doing additional testing for connective tissue disorder. And ordered an at home EEG.
• Nephrology – lowered blood pressure meds and everything else looks good
• Allergist – yes, he is allergic. no, he’s not allergic.
• Gastroenterologist – continue elimination diet.  Added a new med to coat the stomach/esophagus to aid in healing.  will share Ben’s case with colleagues.
• Podiatrist – thinks Ben has an inflamed growth plate in his foot and has ordered an MRI.  Must be non-weight bearing for a few months.
• “Quack” doctor (but in reality she was the first doctor to help Ben’s vomiting.  Ben told her the last time that she was his favorite) – keep up the diet.  would like to test his “output”  for any deficiencies.
• Psychiatrist – Ben is dealing with significant stress and anxiety.  Continue to see therapist and increased medicine.
• Therapist – worried about Ben.  sabbatical can’t come fast enough.  He needs a break.
• Physical Therapist – he is losing muscle tone. He is losing so much weight that his body is starting to metabolize muscle. Increase exercise and protein intake.
• Dysautonomia specialist – currently not taking any new patients and no other dysautonomia specialist will see Ben due to his complex medical history.
• Orthodontist and dentist – Yep. He has loads of teeth issues.

And of course, there is our pediatrician who continues to be the team leader and help us deal with all of Ben’s health concerns.   She is fabulous and I don’t know what we would do without her.

But did you count those specialists? 11.  Eleven specialist to drive to, to make appointments with, to follow through on their orders and tests, and to make sure we are doing the home care that they ask us too.   And those are just the specialists that we have been dealing with this year.  You can see why I sometimes call myself a “medical taxi driver.”  There are days that I feel like that is all I do.  Take Ben to doctor and therapy visits, or pick him up from school because he isn’t feeling well.  Or making phone calls for follow up appointments, picking up meds, talking with the school, reporting to the pediatrician’s office, dealing with insurance, etc.

It really is a full time job. Plus there are two other children in our family and a husband. (It’s no wonder that I’m as sick as I am. )

This sabbatical is for Ben too, as well as the rest of the family.  We promised him no medical visits during our beach stay unless he decided otherwise.   This has been a long road for Ben.  He is so frustrated right now.  He hates the diet, but he is happy with how he feels on the diet. So he wants to continue it.   He’s mad at God.  He is frustrated with the medical system.  He needs to be boy and to run around and play like a kid. So this summer he is.

He is almost 14 years old.  In the last few years, we have been working on teaching him how to take care of his medical needs.  What medicine is he on?  Teaching him to engage with the doctors and ask questions.  Let him help make some medical decisions. Some day he will be on his own.  He won’t have his mom there to help.  So we are working towards that day.  But Ben’s case is complex.  He doesn’t understand everything yet.  I worry about the future.  There are times that I can’t think more than one day ahead. Planning this sabbatical a year in advance was sooooo hard. We have been living no more than six months at a time for over 11 years.

These three months mean so much to us as a family.  Hanging out more. Forgetting what our real life is like.  Trying to forget that we have a chronically sick child. So play away, Ben.  And he is.  Even though he slathers on the sunscreen, his coloring has turned from a gray color to a nice tan.

When school starts we will jump right back into our routines again. I’ve told ALL of his doctors that we will not be seeing them for three months.  So they all understood completely and were excited for our family to get away.  In August (once school starts) we will be back to the craziness.  I think he already has 5 doctor visits scheduled for September, but that is ok.  We will be ready and rested by then.