Restored Hope: The Power of a Skilled Physician

I've been distant the past couple of weeks.  I haven't wanted to come to terms with our current situation and I'm still not fully aware of the significance of our testing results.  I'm not ready to share all of the details, but I do want to provide an update.

Jayson's imaging was completed a few weeks ago and we have access to the reports.  His CT scans revealed he does not have Superior Canal Dehiscence and has some problems with his facial nerves and his cochleae, neither of which can explain his pain and sensitivity to sound.

His MRI report was hard to digest.  The first thing I noticed and celebrated was that it was evident there were not signs of intracranial pressure, meaning his Chiari was stable and no need for another cranial expansion!!!  However, there were several new findings with conditions I had never heard of nor could ever pronounce without practice.  As I hit the world wide web for resources, I found little and discovered one of his new conditions was ultra rare.... 50-60 cases since the year 1914 rare.  And according to the research articles published, the outlook and prognosis are not good.  I clearly began to panic and started the balancing act of becoming informed enough to be able to have a good conversation with the doctors without becoming the crazed, emotional Google mom.  I reached out to our neurologist who said he would contact us with results, but despite several efforts we still have not heard from him.  Another troubling MRI finding indicated we needed to see neuro ophthalmology.  Coincidentally, we had already been referred again and had an appointment in just a couple of weeks.  It was not clear whether these other findings could explain Jayson's head, eye and ear pain and discomfort.  I was desperate to hear from our specialists, because in the meantime Jayson has continued to have daily, chronic pain.  His teacher called a week ago frantic saying she had never seen Jayson in so much pain before and we had to go get him.  We have observed Jayson rubbing his head, eye and/or ear from several times an hour to several times a minute while he tries to keep himself busy and distracted.  We have been awakened by his grunting, groaning or monitor alerting us he was in pain in the middle of the night.  We have watched and listened as he desperately tells us, "I hurt head eye," on nearly a daily basis.  We make promises to Jayson we may never be able to keep, letting him know Mommy and Daddy are working with doctors to find his pain and to fix it.  There is no feeling like it in the world to watch your child be in chronic pain and promise them you'll take it away, knowing you very well may never be able to.  As a parent, my thoughts have been consumed by my worry and fear.  My productivity at work and in my extracurricular activities has greatly been affected.  How do you continue to do life's daily tasks knowing that nearly every minute of every day your child is in pain?  It's impossible.

Jayson's sedated ABR hearing test resulted his hearing has remained the same, mild low frequency hearing loss in his right ear.  However, the audiologist said his ears looked terrible!  A lot of redness, inflammation, drainage and blood.  She said it looked recent, not from his tube surgery.  She encouraged us to contact our ENT as soon as possible and to get in with our pediatrician on Monday.  We did and sure enough, one of Jayson's ears was infected... again.  We began drops and then Jayson caught a cold, which always end up in double ear infections.  A couple of days later the drainage and severe pain began and we started oral antibiotics via G-tube again.  I was fed up.  This was literally one ear infection after another since December, even after replacing the clogged tubes.  We keep using the same antibiotics!!  What if it's not treating the infection?  Why haven't they cultured the infection?  I called ENT and they got us into an urgent appointment, which took place yesterday.

Yesterday's appointment was among our most discouraging appointments ever.  The ENT examined Jayson and told us his ears looked perfect.  No sign of infection.  No inflammation.  No issues.  Yes, he was still on antibiotics which was likely treating the pre-existing infection, but why was he still grabbing his ear all day long and hollering out in pain??  Why was he struggling to sleep, and participate in school and therapy?  I asked the ENT these questions.  Instead of thinking, hypothesizing or collaborating, he simply said it had nothing to do with his ears.  I mentioned the couple of abnormalities found on his CT scans and asked if these can cause pain.  He said no, and the findings were insignificant.  I asked what else it could be, pleading with him to throw around some ideas and brainstorm with me.  All I got was, "It's not his ears.  I can say that confidently.  It's a neuro issue."  When I informed him that neurology and other specialists have indicated them believe this is an ear issue, he stated his ears look perfect and were not even that bad when he replaced his tubes.  I asked about facial nerves, sinuses, any other explanation and he simply said this had nothing to do with his specialty and that Jayson is a complex kid.  Maybe it was sensory or behavioral??  When I asked how that would explain the pain in his sleep, he admitted it wouldn't. He told us to follow up with neurology.  That was it.  No ideas.  No questioning, pondering, wondering or thinking.  What his short answers and body language told me was, "Because Jayson can't tell us, his pain isn't real.  It's not worth my time."  My mommy heart sunk and I had a lump in my throat.  I threw out one last desperate question with tears in my eyes, "But what could possibly be causing his pain?" to which he responded, "I know it's hard.  Jayson is complex.   He is his own person.  Summer is almost here,  Perhaps that will be a better season for him."  His passive comments physically hurt and I felt isolated, alone and desperate.  This physician is one of Jayson's key team members.  If he wasn't willing to help figure this out, who will?

I left feeling sad, defeated, frustrated and angry.  How different would this encounter have been if Jayson could have talked?  What if Jayson could tell him, "No, I'm not making this up.  Off and on throughout the day my ears hurt really bad! I can't concentrate, play or sleep.  They are bothering me all day every day.  I don't cry often and I can handle a lot of pain and surgeries without pain, but sometimes my ears, eyes and head hurt me so bad I just cry."  I doubt the doctor could look him in the eye and tell him, "It's not your ears.  I can say that confidently.  It's a neuro issue.  Maybe it's sensory or behavioral.  Maybe summer will be better for you."  It is heartbreaking how differently our non-verbal children are treated because they cannot communicate in traditional ways, all because it takes effort and time to understand what they have to say.  I wish so much things were different and all doctors were willing to listen to Jayson, even when he cannot communicate with his words.

It was hard to feel so down after the appointment and realize that one of my biggest fears may become a reality.  We really might be told by Jayson's doctors that Jayson's chronic pain is his new normal and there is nothing we can do.  The thought made me physically ill, and greatly increased my anxiety about the following appointment.  The next morning (today) we would have an appointment with neuro ophthalmology.  We saw a doctor in this specialty when Jayson was just a few months old and it was NOT a positive experience.  We were insulted and my son's conditions were very quickly dismissed, and he was even more medically fragile at that time than he is now.  I worried we were putting ourselves in a situation to be treated this way again.  And after our ENT appointment, I feared it was even more likely.  I had been holding onto hope the past few weeks that maybe THIS was the doctor who could give us answers.  Maybe THIS doctor could connect the dots and offer solutions no one else had thought of.  Maybe we could learn more about Jayson and how his brain and eyes are affecting the rest of his body.  When it was just he night before the appointment, I didn't want the next morning to come!! I didn't want my hopes crushed nor did I want another doctor telling my son his pain isn't real or doesn't matter.  I feared if that were to happen I would snap.

I woke up this morning both extremely nervous and excited.  I chose to hold on to hope over fear and I said a long prayer this morning begging my Heavenly Father to help this doctor listen and truly see Jayson.  I pleaded for Heavenly Father to help her to offer us something positive such as an answer, an explanation, a connection, a treatment, anything.  As we were taken back to a room, we first visited with a nurse and then a resident doctor.  They were both very attentive, detail oriented and really seemed to care.  The resident had good questions and took careful notes.  He was already familiar with Jayson's extensive background and didn't ask me to relay his long history.  He knew exactly what to ask and what details would be important.  He left for a few minutes to converse with the doctor before she came in.  Dr. D and the resident had already taken some time to look up Jayson's recent MRI and review all of the images.  She asked for the resident to recount what he had learned about the patient and she listened intently and asked us clarifying questions.  She watched my videos demonstrating Jayson's behaviors indicating pain.  She immediately started throwing out ideas, all things I had never heard of before.  The resident took notes as she asked more questions to narrow down her ideas.  Some of my responses seemed crazy and I feared her reaction.  She asked, "How long are Jayson's episodes of pain?"  "It is weird, but they seem to last just a few seconds.  But they cluster," I responded.  She validated me by telling me that was very helpful information.  She mentioned a couple of conditions that come with sharp, quick pain to the head, eyes and ears.  She asked, "So how often do they happen?"  I answered, "All day every day right now.  Some days are worse than others.  On a bad day he can grab his head or eye a couple of times a minute when they cluster.  Otherwise several times an hour."  She responded, "So you could say hundreds of times a day?"  I got nervous.  That sounds crazy, right?  "Yes, I guess so... "  "That can happen," she said.  "This is very helpful."  I showed her videos demonstrating how some are just subtle rubbings of his head and eye during regular activity, while others he is crying, screaming and hand flapping while grabbing at this head, eye, neck and ear.  After seeing the video she turned to me and grabbed my arm and said, "You are a very good mother to notice this.  Some of these are subtle. It is wonderful you have paid close attention and caught this so soon.  Many would not have noticed."  I was shocked to hear such a compliment when some doctors have accused me of worrying too much and reading too much into Jayson's behaviors.  I said, "I have to be, he's non-verbal.  I have to observe him and be his voice." "Yes, but it is to be commended.  You know your son well."  My heart swelled.  How wonderful it felt for her to notice and appreciate my attentiveness.

She told me this was going to take collaboration.  She typically works with adults.  She told me she is not a pediatric doctor and would never pretend to be.  She told me she would not dare to jump in and start prescribing medicines or tests without talking with my son's specialists.  She asked for their names and told her resident to have the assistant begin looking them up, contacting them and getting them on the phone asap.  She said this would take a collaborative effort and she would be driving the conversation.  She also said she needed time to get with her team and go over all of Jayson's MRI and CT imaging, looking to see what might have been missed and compare previous images with current ones.  She mentioned a couple of specific things she was looking for that may or may not show in Jayson's imaging.  If it's not there, she may want to order more detailed imaging to ensure with confidence it isn't there.  She told me above all else, she needs to prove with certainty that this is not intracranial pressure and that will take time and more tests. 

Wait, is this really a doctor who didn't feel she knew everything?  A doctor who wants to collaborate with others despite the challenges?  A doctor who didn't want to dismiss Jayson due to his complexities and inability to speak, but rather would like to investigate some possible conditions and treatments?  A doctor who saw his pain, even the subtle evidences, and said it was not okay for him to suffer?  A doctor who listened when I said there was a change beginning in December and is diving into what could have caused that change?  A doctor who acknowledges that things can be missed in imaging and is willing to comb through it with a team?  A doctor who admits that intracranial pressure can exist and be missed even if an MRI report says it is not present and a standard eye exam does not discover optic nerve swelling?  Does a doctor like this seriously exist????  This woman is exactly who I had hoped and prayed for.  EXACTLY.

So she came up with a plan and she began acting on it immediately.  She wanted my neurologist on the phone, now.  She sent messages to my doctors right away.  She made a recommendation for a new medication for our neuro to review and hopefully prescribe immediately.  She suggested a couple of tests to run if they couldn't find what they were looking for in Jayson's current imaging.  She said she would personally contact Jayson's ophthalmologist who we see on Monday to let him know about our visit today and what she is looking for and recommending.  She told me she will see this through and communicate with our involved parties.  When I asked her when we needed to follow up or what my next steps would be to ensure everyone is following through she responded, "I will be coordinating this.  I must rely on your pediatric doctors because I am not a pediatric specialist, but I know what we are looking for.  My focus is on finding the source and managing your son's pain and I am confident we can do that.  That is my job and I will need the help of your specialists to make it happen, but we will get it done.  We will get his pain under control.  That I know we can do."  Tears filled my eyes.  I wanted to jump her and give her the biggest mama bear hug imaginable.  But I held myself back.  Instead I gave her an awkward arm rub and said she can never know how much those words mean to a mother of a child in pain.

And that was our visit.  Honestly, out of this world.  One of our largest blessings to date.  It was so very refreshing and inspiring to have such a wonderful doctor visit with a doctor and team who had familiarized themselves with Jayson's records, weren't intimidated by his complexity, brainstormed ideas and challenged themselves to think outside of the box, pieced together clues and information I gave them, listened like REALLY listened, came up with a plan with several options, communicated immediately with other team members, had a follow up plan and a solid goal to relieve my son of his daily head, eye and ear pain.  I guess today I'm grateful this apparently "is a neuro issue" because this is the right woman to be figuring it out (even though the irony is that one or her main suspicions is an ENT issue). 

After today, I am hopeful we will figure this out.  I am hopeful my son will know what it is like to have a pain free day again.  I am hopeful that we will get one or two steps closer to really understanding Jayson and his complex body.  And I am hopeful that my son is finally being heard and his {silent} voice matters.  As we got in the car, Jayson's daddy told him, "The doctor listened and cared Jayson.  She is going to help your head and eyes feel better." The big smile that spread across his face at that moment will stick in my mind and heart forever.  His response confirmed what we already know-- He knows what is happening.  He knows when he needs help.  He knows who is trying to help him.  And he knows Mommy and Daddy are doing everything they can to keep their promise.

And we won't stop until we do.

I am sharing this short video of a few clips demonstrating Jayson's pain in case others might have some ideas.  Please feel free to comment or message me if you have some suggestions or insight.  Thank you!