August 5, 2020 |By Kelly MacDonald Marrero
August 4, 2019, was the day that changed our lives forever—one that we call the perfect storm. A few weeks prior to this day, my daughter Brynn had turned two, with a baby sister born a few months before.
We noticed some weird behavioral changes as I returned to work from my 12-week maternity leave. Brynn is my first child, so my thoughts were immediately, “Wow. Two-year-olds are tough.” I kept asking my coworkers and friends that had been through this, whether this was normal, and they assured me that it was simply the “Terrible Twos.” They promised me she would get used to my working again. They even commented, “Wait till she turns three… it gets even worse!”
Brynn had been a very mild-tempered, funny, happy-go-lucky child that I really never had any behavior issue with. Developmentally, she was ahead of schedule: speaking full sentences; knowing numbers and colors; and speaking and understanding a good amount of the Spanish language.
As a week went by, she started not sleeping through the night, tantrums started becoming inconsolable, and exhibition of impulsive behavior. Starting on a Monday she vomited and her appetite changed. My husband, observing very subtle movements like Brynn cocking her wrists outward. He took me aside on Wednesday and said, “It’s almost like she is autistic. Additionally, her behavior towards her cousins changed. I remember my sister and I laughing under our breaths because she was in a RAGE yelling and screaming at them! By Thursday, my mother-in-law reported to me that she was barely eating. She had even turned down a Popsicle in the bathtub which she looks forward to every night!
It is truly the hardest thing as a parent to decide when to call the doctor, you never want to miss anything, but at the same time, you don’t want to be one of those parents that take your kid in for every little thing. My husband and I decided that since I had the day off on Friday, It would be a good idea to just take her in to make sure everything was ok. Throughout all of this, she never spiked a fever!
By Friday morning, she was looking pretty rough. Little did I know, this was the last day I would hear her sweet little voice for seven weeks. At the pediatrician’s office, I explained what was going on. They did the full exam including looking in her mouth. As a dental hygienist, it’s normal for me to observe her mouth regularly, and I had seen nothing weird. Her nurse practitioner stopped and said, “Do you see this little white dot in her mouth? This is very common. Your child has Hand-Foot-Mouth disease.”
She further explained that this is why she wasn’t eating because it is very painful. She also stated to me that it would probably get worse before it got better, and this virus has to run its course. She instructed us to make sure she was drinking fluids and not to let her get dehydrated. On Saturday we laid low, gave her some Pedialyte and began syringe-feeding her liquids and had to bribe her to get a couple drips down. The next morning, I ran a quick errand and my husband stayed home with Brynn. As I was sitting in the parking lot, my husband FaceTimes me, saying, “She is unresponsive,” as he lightly moved her face from side to side, calling her name, all without her making eye contact.
I have never shoved groceries in my car so fast. I instructed my husband to get dressed and I will be home ASAP and we will be taking her somewhere! I immediately got on the phone with my best friend who happens to be the nurse practitioner at the local pediatric urgent care clinic. She said, “Come on in and we will check her out… she is probably just dehydrated. We will give her some fluids and see how she does.” When I got home, Brynn had perked up as if nothing was wrong and I questioned my thought process. We chose to proceed, thinking, “Better safe than sorry!”
We arrived at the clinic and the nurse practitioner agreed that she didn’t seem normal and started an IV immediately. Upon observation, the doctor noticed her eyes were rolling back in her head and noticed unusual movements. They called an ambulance right away due to the fact it looked like seizure activity. I was taken back by how fast everyone was moving and thinking, “OMG, is this really happening! What is going on? Our worse nightmare was coming true. Something is wrong and we have no idea!” We were rushed to the local hospital and there they did a MRI, spinal tap and drew some blood. Everything came back normal, except a herpes 6 virus (a/k/a, Roseola which every kid under the age of five comes in contact with and fights off) which was wonderful, except no one could explain what was going on. The doctor did state that it seemed neurological, but he couldn’t put his finger on it exactly.
From here started a seven-week journey to the world of a medical nightmare with Autoimmune Encephalitis. We only stayed at the first hospital for two nights, due to the lack of attention my daughter was getting. They initially placed her on EEG machines to watch her closely for seizures, which she had none! They treated her for the herpes with a high doses of Ganciclovir, saying it was to risky to do steroids. Getting a doctor to answer any questions or return to our room was a nightmare. There was no infectious disease doctor or rheumatologist, and getting a hold of a neurologist was a chore.
The second day I kept hearing meningitis/encephalitis, though no one said this to me directly, nor could explain anything. At this point, I had not had a meal or slept. I felt like no one was doing anything and I was up all night researching on Google different signs and symptoms. I got wind from one of the doctors that a transfer could be in place if I wanted, to which and I replied, “Yes, let’s get outta here!” This was the best decision I ever made.
The next day we were transferred to Arnold Palmer Children’s Hospital in Orlando where a plethora of doctors asked all the right questions. They ran about 100 different test to different labs, and I could tell they were really working toward a diagnosis. No one had a clue until a Rheumatologist who had previously worked for a doctor that had a lot of experience with patients with AE. She strongly suspected the NMDA Autoimmune Encephalitis but we realized for the test it takes over a week to confirm because it has to be sent to the Mayo Clinic.
They were actually very confident with this diagnosis that they started with very high dose of Solu-Medrol and IVIG for a couple of days. Brynn at this point was in bad shape. They attached ” No-No’s to her arms so she could not pull the feeding tube out. Her eyes were rolling back in her head, she couldn’t sit up, and had this movement disorder which is very common with AE. There were days she went without sleep and then days all she did was sleep! It was so scary to watch your child go through this as you helplessly sit on the sidelines, praying the doctors and nurses are doing what’s best for your child. Then, the diagnosis came back positive for NMDA Autoimmune Encephalitis, at which point the doctors decided to treat it aggressively with five rounds of plasmapheresis and two rounds of a chemotherapeutic drug called Rituxan. We spent three weeks in the ICU and another two weeks on a stable floor weaning her off the drugs, and beginning PT, OT, speech and music therapy. Brynn had reverted back to a baby: sticking things in her mouth; moaning to try and communicate; and crawling on the hospital floors. Around week five, she became a two-person job, changing diapers and keeping her from getting tangled around all the cords to which she was attached.
To make this whole experience even more challenging, Hurricane Dorian was headed to our hometown of Melbourne, and we had a three-month-old infant being passed around the family, driving freshly pumped milk back-and-forth. I fully believe the only way we made it through this terrible nightmare was the support we had from our friends and family. Truly, we would not have been able to do it without them. Kudos to the Ronald McDonald house that housed my family as they came to visit to stay long weekends so I got to see my infant.
Daily, we saw subtle changes. Brynn became stronger and actually started to walk before we changed hospitals. That was the best day ever seeing her up walking, though she was very unsteady. Little did we know, this now presented us with new challenges as she became more difficult to keep in a bed or hospital room.
Our last stop was we being accepted into a rehab facility across town at another children’s hospital. Here she learned how to eat and bathe, and she started saying words again the very last night we were there! What a relief my kiddo was coming back to us!!! Doctors to this day can’t tell us where we will be in the long run or how long it will take her to fully recover, but we have high hopes with positivity and a heck of a support system that works with her everyday to be all she can be.
That concluded our seven weeks and we finally got to come home. I was a little nervous because we had so much help and proper tools to keep her safe at the hospital. We continued at home with occupational therapy and speech therapy until the end of the year. Brynn was back! Doctors would like to still remain on monthly IVIG treatments for one complete year and supplement with Rituxan as needed. All of them are amazed by how fast she snapped back from this disease. I can honestly say that it was because of a fast aggressive treatment, attentive doctors, and a strong support system full of love, patience and positivity that pulled this little girl back. Life is way better than we had projected at this point. The monthly IVIG treatment is rough as my daughter hates getting the IV. Hopefully we can look back at this and say, “Wow, that was just a bump in the road.” Until then, we will just keep our heads up and plug along!
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