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Our Friend Marisa
Marisa is a sweet little girl that is fighting to recover from Acute Disseminated Encephalomyelitis (ADEM) in “ADEM Recovery Looks Like This.” At home now, Marisa is continues to make progress. With ADEM Recovery, progress usually comes fast once treatment begins and then slows down.
In spite of everything that Holly, Marisa’s Mom, is focused on right now, she took time to put pen to paper and share Marisa’s story with us. Holly is an amazing Mom, who is still fighting to make sure Marisa has everything she needs to heal. By reading her story, we hope you’ll see the importance of taking an aggressive approach to your health care. You are your own best health care advocate.
This is Marisa’s Story in her Mother’s own words.
My name is Holly Machado and my family consists of my husband Brad and our children, Marco and Marisa. We live in Fresno, California. Marisa was born on January 2, 2009 and quickly grew into a sweet, loving, affectionate, independent, precocious, fearless and strong child. She warmed up any room because she was always happy and cheerful. And she loved to give kisses and say, “I love you!” to pretty much everyone she knew.
Both of my kids were very healthy and strong. The only exception was Marisa had ear tubes put in when she was 15 months old because of recurrent ear infections. The surgery took about 6 minutes and within weeks Marisa was talking like a 2 year old.
Monday, January 24th, 2011, began like any other day except it would mark the beginning of events that would change every member of my family’s life forever. When we woke up that morning both of my kids had come down with upper respiratory infections. I bought extra Kleenex, turned on the humidifier and kept the kids home for the next few days to recover.
On Saturday night Marisa developed an ear infection so I took her to her ENT specialist on Monday morning, January 31st for antibiotic ear drops and oral antibiotic. Marisa fell asleep in the car on the way home from the ENT office and I put her directly into her crib for her nap. When she woke up from her nap she had a fever of 103.6 and began vomiting. She continued to vomit and have a low-grade fever so on Thursday I contacted her ENT doctor who said to take her to her pediatrician. I called her pediatrician for an appointment.
Unfortunately, he had left early that day and his office was closed on Fridays, so I took her to the urgent care office by my parent’s house. The doctor there thought she didn’t look good so he gave her an x-ray for pneumonia. The x-ray came back negative and I said, “Look at her, she looks miserable.” He said, “She has the flu, I can tell. Don’t you feel miserable when you have the flu?” I agreed but I did think it was strange that Marisa had the flu when she had received a flu shot. Her fever went away the next day but Marisa continued to vomit sporadically.
Marisa’s pediatrician’s office is closed over the weekend so I took her urgent care on Saturday to have her checked for dehydration and to make sure her infection was not worse. The doctor said her hydration was fine and he saw no signs of infection so he said it would be okay if I discontinued the oral antibiotic since she was vomiting her medication up anyway. He said to feed her yogurt to replenish the good bacteria in her stomach because she probably lost the good bacteria because of the flu and the oral antibiotic. He claimed this was the likely reason Marisa was vomiting.
On Monday, Marisa, January2011 February 7th Marisa woke up looking really good so I took her to the park. She ran around and was smiling but seemed to get tired easily so we went home early and she laid down for a nap. When she awoke her temperature was 100 so I called her pediatrician again for an appointment. He had no more appointments that day so I took her to urgent care again. I was very concerned that she had an infection since she did not finish her antibiotic. The doctor there checked her lungs, hydration, ears and throat for infection and saw no signs of anything wrong. I asked her why Marisa would continue to vomit and she said that Marisa probably had a virus and to make sure to keep her hydrated.
Once the Zofran wore off Marisa’s vomiting returned violently, so on Thursday, February 10th I rushed her to the local children’s hospital ER. I was concerned that she might have something “weird” now and I asked the doctor, “do you think she could have an infection in her brain?” He said “its unlikely” and I felt a little relieved that he didn’t think she had something in her brain. We did spend about 10 hours in the ER that day while they ran numerous tests: a head CT scan, blood tests, x-rays, UTI analysis, etc. All the tests came back negative except a blood test showed she had a high white blood cell count. I asked the doctor if that meant Marisa had leukemia and he half laughed and said, “no, no, it is just one white blood cell and its not even that high.
Its probably due to stress on the body from vomiting.” He concluded that she had a virus and sent us
home with instructions to give Marisa more Zofran for vomiting and make sure she got plenty of fluids.
When I took Marisa home that night she sat up in bed, watched Toy Story and ate saltine crackers with
her brother. I figured she was on her way to recovery and I was so incredibly relieved that they had found
nothing wrong in all of their tests.
The next day Marisa slept all morning and when she woke up, she vomited again, even while taking the anti-nausea medication. I loaded her back into the car and took her back to the ER. It was Friday, February 11th, 2001. While we were waiting in line again at the ER Marisa began to vomit violently and began to grind her teeth. I became hysterical and one of the nurses took us to the front of the line. The ER doctor began running more tests. He eventually did a “lumbar puncture” which showed a white blood cell count in her cerebrospinal fluid of 42. He said she either had meningitis or encephalitis, but he said encephalitis was unlikely because “it is not the season for encephalitis.” I again thought her brain was okay and was a little relieved. The ER doctor immediately started her on IV antibiotics and we were admitted to the hospital.
That night, about 3am, one of the resident doctors spoke with us about Marisa. She said she was happy to report that Marisa had viral meningitis. They would give her fluids and she would be home in 2-3 days. My husband and I were so relieved and texted everyone we knew the good news. The next day, however, we saw another resident doctor and he said they were working on diagnosing Marisa. They were pretty sure she had meningitis but weren’t sure if it was viral or bacterial. I said to him, “The last doctor was sure she had viral meningitis, and now you’re telling me you’re not sure?” I started to get worried that they really didn’t know what was going on with Marisa.
We finally saw a real doctor, a “hospitalist”, on Saturday and she concluded that Marisa had an infection somewhere in her body. She just didn’t know where the infection was in Marisa’s body. She advised that the “broad-spectrum antibiotics” Marisa was being given would wipe out virtually any infection she had. The hospitalist doctor thought that possibly Marisa’s appendix had ruptured and she had an infection in her abdomen. Marisa had had a CT scan of her abdomen in the ER, but it was inconclusive as to appendix rupture. The hospitalist doctor consulted with a pediatric surgeon who advised there was no appendix rupture. Back to square one!
On Monday, Valentine’s day, we got a new hospitalist doctor and he basically ignored Marisa for two days. Marisa was scheduled to have a PICC line inserted on Tuesday, to ease delivery of her antibiotics, so we really didn’t see our new hospitalist until after Marisa’s surgery. When Marisa came out of surgery (we’d been in the hospital for 5 days) she looked really bad. She started to get “lazy eye” right before my eyes! The nurse tried to assure me that it was probably because Marisa was really tired. Over the next few hours Marisa began to show signs of seizure activity. She was very stiff, she was grinding her teeth and her fists were either clenched or her hands were shaking badly. I kept saying to the nurses and the hospitalist, “she’s having seizures, she’s having seizures!” They spent all their energy trying to convince me she was not having seizures instead of trying to figure out if there was anything to be done!
The hospitalist doctor finally gave Marisa a drug called “ativan” to make her sleep. Marisa fell asleep and the hospitalist doctor left to go speak with a “neurologist.” I had heard of a neurologist before, but I didn’t realize that was the kind of doctor Marisa needed to see all along.
Before the hospitalist doctor could return, Marisa woke up and began having a seizure that ultimately lasted for 45 minutes. I ran to get a nurse who ran into the room and pressed a button above Marisa’s bed. I heard over the hospital intercom “rapid response room 815, rapid response room 815.” This is an emergency call throughout the hospital. Several doctors and nurses rushed to her room and began frantically working on her. They made me leave the room. After several minutes, they decided to take her to the Pediatric ICU (PICU.) I was absolutely hysterical and I wasn’t sure if Marisa was going to live.
I couldn’t believe this was happening to my precious little girl. I had previously called my husband and he was just arriving to the hospital when several people were rushing Marisa to the PICU. He tried to get on the elevator with Marisa, but they wouldn’t let him go. He didn’t know what was happening to her.
Once in the PICU Marisa’s doctor put her on a respirator and flooded her body with drugs to stop her seizure. The amount of drugs they gave her put her into a coma. Finally, on Wednesday, February 16th, Marisa was given an MRI and she was diagnosed with acute disseminated encephalomyelitis (ADEM.)
Basically, the upper respiratory infection that she came down with on January 24th triggered an auto-immune reaction in her body that began on January 31st. Her own immune system began attacking the myelin nerve coverings in her brain and spinal cord. Her brain had been deteriorating since January 31st and we finally found out more than two weeks later!!
Marisa’s PICU doctors began treating her for ADEM on February 16th. Her treatment included IV steroids, plasmapharesis, a blood cleaning procedure similar to dialysis, and IVIG, which is human immunity and is supposed to “shut off” her own immune system.
Marisa’s doctors took her off sedation on February 17th and said she would wake up from her coma that night or the next day. However, Marisa stayed in a coma until February 23rd, when she opened her eyes for the first time in 8 days. When she finally opened her eyes, she could not see, speak or move. She could hear perfectly and cried inconsolably whenever I spoke to her. She was “locked-in” as her doctor called it. Over the next week Marisa improved until her doctor felt she could come off the respirator. She was “extubated” on March 1st. She was moved out of the PICU to the rehabilitation unit on March 11th.
Marisa’s recovery has been very slow when compared to most ADEM cases. She began speaking again on April 23rd, the day after we came home from rehabilitation. She took a few steps on her own a couple of days ago, May 10th. She has hemiparesis on her right side (her leg and arm are weak), which indicates that she has permanent brain damage to the left side of her brain. She can move her leg but she cannot move her hand or arm. Her doctors have told us it is unlikely that her right side will ever be perfectly normal again. We hope to prove them all wrong.
This has been the worst experience of my life. I’ve cried and cried over all the regrets I have: I didn’t take her to the doctor enough! I didn’t pick a good pediatrician! Why didn’t I realize she was so sick? Why didn’t I realize she had something in her brain? Why didn’t I find a new pediatrician when I couldn’t get in with her current one? Why didn’t I fight harder for her to get more attention from her doctors? If I could go back in time I would have screamed from the top of my lungs, “My daughter is extremely ill, do every test you can until one comes back positive!”
I’ve learned that the people in medicine are just like people in other professions: some are caring, some are proactive, some are bright, some are lazy, some are careless and some are apathetic. I am the person who loves Marisa the most and I have to make sure that she gets good medical care. And that means being assertive and demanding, otherwise, your child will get lost in the shuffle.
I welcome anyone who has a child or relative with ADEM to contact me on my cellphone at 559-273-8997. Luckily, I found Christy Thompson on the internet at www.neelysmiracle.com and she helped me through this devastating time. She was so caring, supportive, positive and helpful. I would have not coped as well were it not for Christy and her texts and calls giving me encouragement and hope. I thank you Christy for everything and can’t wait for the day we can meet in person!