Another day, another diagnosis

Kennedy Kreiger/Johns Hopkins Campus

Our day started at 4:00 this morning. Naturally, I was prepared last evening for an early departure today- diaper bag, car, medical records (in my giant binder, organized by tabs) and distraction toys for G were all packed. We left at 6:30 am, which was going to put us in the midst of rush-hour traffic…..on a Friday. Woof.

Luckily I am a very responsible and efficient driver, so we made it to Baltimore in 90 minutes…including a Starbucks stop!

Once we got into the Outpatient Center at Kennedy-Krieger, I got us checked in. The two men standing at the check-in desk were faces I hadn’t seen before. They were friendly, as all staff there have always been, and got us checked in for the remaining portion of our multidisciplinary evaluation. We had finished the Eye portion, dermatology and neurology over the past three months, so we were finishing the rehabilitation and neuropsychology portions today. Once we were ready to go back to see the doctors, I was called Adele by the two men at the front desk, convinced that I am the singer’s doppelganger.

The first portion of the three-hour appointment was to meet with Dr. Comi regarding the results from Greyson’s EEG last Friday. Dr. Comi greeted us and asked if we had received any results from the MRI yet, to which I replied that we were not scheduled until September 17th, which was unacceptable to Dr. Comi. She called to her scheduler and had her bump up the MRI to next Friday. The urgency, we learned, was because Greyson’s EEG was extremely abnormal. His EEG showed “left parietal sharp waves and clinical seizures”, to which he was having the entire appointment today.

An answer, FINALLY!

We have been looking for any glimpse of an answer for 10 months now, so immediately my heart sank to my stomach. I was relieved, but sad at the same time. Sad that we have only just begun the long road ahead for treatment, but relieved that we finally had a small glimmer of hope to help push us through whatever the future holds. Greyson was prescribed Trileptal twice a day for a week, then we will bump up the dose next week to see how he tolerates it. Dr. Comi believes that with the medication, we would see a significant increase in G’s speech and language skills, along with his coordination and balance. We are extremely excited to hopefully see some progress with him!

There is still some uncertainty among a formal diagnosis, but we now know that he had encephalopathy with seizures. The functional MRI will hopefully show us what parts of the brain are.specifically impacted by the seizures and if there is anything we can do to help the progression of brain damage.

The neuropsychologist assessed Greyson and thought he was too young for an ADOS, which we agreed that he is not ready for, so we did a Vineland to evaluate his adaptive functioning skills. We should expect those results within a week or two, as well as the multidisciplinary report from the 5 clinicians we saw at Johns Hopkins and Kennedy Krieger Institute. For now, we keep Greyson healthy and continue to monitor him for the seizures, and we will hopefully know more after the MRI next week.

We also had an intake at CHI St. Joseph’s this past Tuesday, which has connected us to a child psychiatrist in Lancaster, Dr. Foley. This service will allow us to consult with another doctor in case an urgent matter appears, or if we will need social skills therapy and medication in the future. G cried the entire evaluation, even crying himself into a nap in the middle of the evaluation room. We are going to hold off on medicine for behavior until we have to, hoping that the seizure medication will help with some more of his pain and irritability.

2 thoughts on “Another day, another diagnosis

Add yours

  1. I will continue to say he is the luckiest kid EVER to have the parents and advocates on his behalf.. πŸ™‚ keep pushing forward and nicking things now will make such a difference.. πŸ™‚


  2. This is a good start! Still praying until he’s doing super better! May god keep your coffee strong, send you some rest and a little me time in between all of this!!


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