The Epilepsy Monitoring Unit

A couple of weeks ago, Andrew stopped smiling and visually tracking. Completely lacking awareness of the world around him, Andrew became a shell of his old self. When a baby regresses in this way, it’s often because of seizures.

We took Andrew back to the neurologist who did the 2.5 hour EEG a couple of weeks ago. Remember he told us after that EEG that Andrew’s “brain wasn’t working very well” but felt confident that Andrew wasn’t having seizures? We knew this due to his brain injury, but felt relief in knowing that he wasn’t having seizures patterns –particularly the devastating hypsarrhytmia pattern associated with infantile spasms. When we took note of the regression, our ophthalmologist and neurologist told us to bring Andrew to the ER. We found out in conversations with the neurologist that Andrew DID have hypsarrythmia present in his 2.5 hour EEG. The neurologist, somehow, failed to communicate that to us, even though this was our number one concern in the first place.

Andrew then spent the night at the hospital for a more prolonged EEG. The EEG was more or less the same as the 2.5 one: not that great. The neurologist wavered over whether hypsarrhythmia was present but ultimately said no.  He reiterated that even if hypsarrhythmia was present, that in the absence of EEG and clinical evidence of infantile spasms, that one should “not treat the EEG.” And even if we DID treat the EEG, he was not a fan of the drug to treat it, ACTH, and was uncomfortable with its usage. Okay fine, no infantile spasms, no treatment.  But when asked if there was anything about the EEG that could explain clinical regression, his answer was “no.”  When asked for an alternate explanation for developmental  regression, the answer was “I don’t know.”

We left the hospital with Andrew that day with the following thoughts in mind: (1) Find a new neurologist; one that will listen to and account for our concerns. (2) Find a strong pediatric neurology program that will more decisively diagnose and, if appropriate, use evidence-based medicine to treat a difficult clinical scenario.

On Friday afternoon, Andrew was admitted into a pediatric epilepsy monitoring unit (EMU) at a new hospital for weekend EEG monitoring. By Saturday morning, three different pediatric neurologists had reviewed the video EEG reading and informed us that, indeed, the presence of clinical seizures was not straight forward.  However, Andrew definitely had hypsarrhythmia, and that there is evidence in the medical literature to support treatment of hypsarrhythmia without infantile spasms.  For Andrew, when one couples hypsarrhythmia with developemental regression, we were informed one must “always treat the EEG” under such circumstances. In short, Andrew had been regressing in his development due to epileptic brain wave patterns.

On Monday evening, Andrew began a two week regimen of twice daily ACTH injections. ACTH is the most aggressive and best option available for infantile spasm treatment. Unfortunately, it only works about 50% of the time and has many, many side effects. But doctors do what they can with what they have. And we all pray for the best.

After one week in the EMU, Andrew was discharged home on Christmas Eve.

Eleanor showing her brother support as we wait in the ER for a room.

Andrew in his dad's arms as they get wheeled from the ER to their room.

Getting comfortable for the night.

Andrew receiving kisses on the morning of his discharge.

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12 Responses to The Epilepsy Monitoring Unit

  1. ewin says:

    i really love you guys. ❤

  2. Kim Manning says:

    I’m so happy Andrew was able to be home with you for Christmas. I am also happy you found a new neurologist. I know how frustrating it can be when you feel like you are being given the run-around by a doctor. When I was in the hospital, and they were running all those tests on me, there was nothing more frustrating then hearing them say “We don’t know” or the many different specialists contradicting each other. Doctors aren’t perfect, of course, and they can’t fix everything, but what you do need is to know they truly care and empathize and are searching for a real answer. It sounds like the former doctor wasn’t fully living up to these needs. I hope you have found a better fit now and I am praying and thinking of little Andrew and of course you, Mike and Eleanor. xoxo

    • earlybirdies says:

      Thanks! We were pretty ecstatic to have the family together in time for Christmas, too. It was a lovely Christmas :).

      I remember you telling me that nobody knew what was going on with you and all of the specialists had different ideas and theories. I’m sure your care could have gone in any one of many directions as a result. We experienced this many times with Andrew. But doctors are human and medicine is not always straight forward.

      I’m glad we found a new neurologist, too. We did not feel our concerns were taken seriously. But we also had the extra knowledge of having a pretty good idea what to do medically for Andrew, but it took getting a second opinion at a very good academic hospital for it to happen.

  3. Matthew Harness says:

    we were happy to hear andy was home with the family for the first christmas. i am a huge fan of andy and his toughness. touching picture of ellie eyeing him, as if to make sure he’s OK with you, his mom. siblings have a special bond, especially twins. she’s a sweetie. can’t wait to meet the both of them. the family’s always in our thoughts.

  4. Esther Lee says:

    Love the pictures . I can’t wait to meet Andrew (hopefully soon) but I’m already in love with him for being the toughest guy out there on the block!

  5. Angela says:

    ❤ ❤ ❤ to you all.

  6. Elena says:

    Thinking about you guys all the time!

  7. Lanita says:

    I stumbled upon this post when researching hypsarrhythmia without spasms… My son has no seizures but still shows hypsarrhythmia and his neurologist doesn’t really know what to do. He has completed ACTH treatment. The hypsarrhythmia went away but came back… Could you tell me more about your son? Thank you!

    • earlybirdies says:

      Hi, Lanita. Thanks for the message. The protocol for cases like our boys–no seizures but has hyps–changes from hospital to hospital. However, at pretty much all top academic pediatric epilepsy programs, neurologists treat the hyps even without seizures. Hyps are very, very bad. And they have a tendency to eventually evolve into other seizures and EEG patterns which can really stunt development. I don’t know enough about your son and I am not a doctor but medical professionals should do all they can to get rid of these devastating patterns and “treat the EEG”. Good luck and thanks for the message. Let me know if you want to know more specifics about Andrew. Otherwise, you can read about his history in the About section above.

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