This text and images on the left side are editable in admin

Marisa is Recovering from ADEM

Article posted on Tuesday, June, 7th, 2011 at 6:53 am

A few weeks ago I wrote about Marisa, a sweet little girl that was fighting to recover from Acute Disseminated Encephalomyelitis (ADEM) in “ADEM Recovery Looks Like This.” At home now, Marisa is continuing to make progress.  With ADEM Recovery, progress usually comes fast once treatment begins and then slows down.

Hours and hours of therapy are needed to take even small steps. (Literally!)  Marisa and her Mom are spending as much as 6 hours each day in therapy to get her as close as possible to her Baseline.

Baseline. That’s the word you use to refer to the way things use to be. Marisa’s baseline is equal to her “normal” before ADEM.  Just establishing baseline can be no small feat for Mom and Dad.  I remember the therapists (Neely had 5 that each focused on their area of expertise) asking me questions about the tiniest details of how she did things pre-ADEM.

  • “Does she hold a crayon most often with a fist or between her thumb and index finger?”
  • “How long can she stay focused on a single task without interruption? Minutes? Seconds?”
  • “How many and which colors does she know? How many letters?”

All therapists and doctors combined, I must have answered hundreds of questions about Neely’s Baseline. It gave me an entirely new perspective for noticing the little things.  She was only 2 and a half when diagnosed, so she hadn’t been holding a crayon for that long. And I had never timed and recorded her ability to focus on a task.  It was great mental gymnastics for me and her Dad!

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.

Marisa, January 2011

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.

The next morning, Tuesday, February 8th, I showed up at Marisa’s pediatrician’s office without an appointment and told him about Marisa’s ordeal over the past few days. He answered me a little too quickly and said I was describing “classic flu.” He told me that although adults might not vomit so much with the flu, children tend to vomit a lot with the flu and to not worry about the vomiting, just worry about keeping her hydrated. He sent us home with a prescription for Zofran that is an anti-nausea medication. I gave Marisa the Zofran as directed and the following day Marisa stopped vomiting, but she began to look like she was dizzy. The Zofran had a warning for dizziness so I immediately stopped the Zofran and figured by now she should be over her “flu.”

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!

9 comments

  • Hi, My name is Gina we live in Michigan.. My son Collin at age 5 in 2009 became very ill almost the exact same as your daughter.. started late January with a upper respetory inf. then went into vomiting, headaches,etc. which then turned into what they believed was viral vs partially treated menengitis..On Valentines day he was med flighted by ambulance over to U of M Children’s Hospital where they did a spinal and said it was menengitis.. this is after weeks of taking him back and forth from hospital to hospital and dr to dr also that kept saying it was a virus. so they treated him at U of M Motts hospital w/a full menengitis treatment and we even did home iv’s. he did not get better.. so I returned to U of M ER and pretty much told them I was not leaving with him that something was wrong it was almost like he was having a reaction to the meds they were using for treatment which was giving him the same symptoms as menengitis, he could hardly walk, etc.. so they gave him his last dose there at the hospital and he did end up having a reaction to the antibiotic they were treating the menengitis with.. so after the meds stopped he got completely better.. he is a twin so he is a lil smaller then kids his age. but he was a healthy happy hyper boy..Well then this Jan. he got a upper resp. infection again he had the croop and was being treated with antibiotics.. well then on Feb 13th (same time of year exactly) he woke up throwing up , fever, headache etc.. I took him right back to the hospital and told them he is acting just like he did two years ago when he had menengitis.. they said it was just a virus and sent us home. well to try to make this shorter, Day after Day I kept taking him back again and again telling them what it was. they actually sent a social worker in for me because they said I had post tramatic from the first time. well day after day I kept returning till finally they admitted him and did a spinal and sure enough they said it was aseptic menengitis. and began treatment again and sent us home after 4 days. he was still getting the headaches and throwing up. they said that was the menengitis..so on Thurs the 24th of Feb. I took him to the Dr for a recheck. she said he looked good and that the symptoms will take some time to go away to use motrin for the headache and gave us to zofran for the vomiting. well that evening about 7pm he got a headache again and went into a seizore I had to call 911 and they med flighted him back to Motts from a local hospital.. put him in ICU and did another spinal and admitted us again..they did another MRI and he now had encefolitis.. and they started treatment up again.. well day after day he had no bacterial growth, and all his labs kept coming back with nothing.but he still had a very high white count. Dr’s did not know what to do. still saying its a virus kept taking him off and on meds. they were even arguing among each other. etc. was getting ready to send us home again with iv’s and he took a turn for the worse. he couldn’t stand, wouldnt eat. headaches after headaches.. I told them again I was not leaving. well finally a new neurologist came in and said she believed it was A.D.E.M.. and after 4 spinal taps and 4 MRI’s in two weeks time they decided it was the A.D.E.M and started him on heavy steroids with in a day you could see the difference in him. he got better fast. and we got released with no meds at all on March 11th except a anti seizore med they had to leave him on till his final MRI which was in June that came back almost compeletly 100% clear.. so he is healthy happy lil 7 year old boy again. and we pray everyday he stays that way. they said the two were not related that he did have menengitis the first time around in 09 and they are not sure if that led to this episode but they tested him for everything even MS and even sent his blood work out to other states and nothing everything shows nothing.. but while we were in the hospital there were 2 or 3 other children there with the same thing they said.. so it must be that time of year when the virus’s hit and send their little immune systems crazy or something. but I have come to believe and am researching.. I believe it has something to do with the antibiotics or the Motrin that we treat the upper resp inf with.. Aseptic Menengitis can be caused by many things. and its so scary I won’t give him anything I try to let it run its course as much as I can..I just wonder if the meds cause his immune system to go crazy instead of fight it off..almost like an allergy. I have started allergy testing but with meds its almost impossible they said to know if they are allergic to them unless you actually have a issue with it over and over well I do not want to even try it again to see..I have so many unanswered questions…Even this huge Children’s hospital was not sure what was going on. and thats scary.. I was ready to pull him out of there and the one Dr. asked me to wait.. I never want to go through this again and we are so blessed we went from this lil boy and a ventilator to a healthy happy little hyper boy. he does have some learning issues reading exspecially he can’t focus..he is hyper so almost like ADD/ADHD. but the Dr don’t want to test him yet they said A.D.E.M can cause and present itself like ADD/ADHD.. so we are having a rough time with his focus. but I can live with that.. I am so happy to have my lil guy…and So blessed.. Thank You all so much for your stories. I just get online when I can and search and search for answers.. I am so scared its gonna happen again..All I can say is be your own Dr.. no one knows your child like you do.. go by your instincts and if somethings wrong just keep going back again and again. there were days I went back twice in one day..Make them listen..they kept sending us home and when he was med flighted back to them they did not want to even come near me. they could not believe it.. So ask question after question and do not back down..its rare and they need to research it more to get answers and train people for it. just because its rare doesn’t mean it can’t happen..I am so glad I found this site..
    God Bless.

  • Gina, Thank you so much for sharing your story with us. I am so glad that your son is doing well. What an amazing blessing. When I decided to build Neely’s website, I never dreamed that we would be able to reach so many families. There are days when it is difficult to keep everything going but when I hear from Mom’s like you I am reassured that this was the right thing to do. I am so glad that you found us and were willing to share your story for others.

    All my best, Christy, Neely’s Mom

  • I just found out my 2 year old daughter has ADEM. It has been really nice to read that there are others out there going through the same things as our family is. My daughter Arleigh and my 5 month old son had RSV this winter. They both were contantly sick the whole winter, Starting in January I had taken both of my children to the doctor so many times I didnt know what else to do. Both were taking so many medicines and Arleigh was diagnosed with an ear infection just days before she went into the PICU. We had noticed that Arleigh was shaking for no reason, her hands, her legs and her tongue. She also developed the “lazy eye”. We thought this was all just normal and that she was going to have a lazy eye. One night before bed I went to put arleigh to sleep and i covered up her good eye and asked her what a couple of her favorite stuffed animals were. She could not tell me. This is when I began to panic. We called the pediatrician and he said that there wasnt anything anyone was going to do for the night and to just bring her to the pediatrician in the morning. So we did that, and both my husband nor I got any sleep. In the morning we put Arleigh in her high chair to have cereal and her poor little arms were shaking so bad that she couldnt even bring the spoon to her mouth. At this time we brought her to the ER. The doctors there took her right in and gave her a CT scan. That showed she had a brain tumor. We were directly admitted to the PICU and had numerous tests done on my little girl. They brought her for an MRI later in the afternoon and we received the results later that night. Praise be to God the tumor had disappeared and now what arleigh had was ADEM. They started her on high dose steroids and a bunch of other meds too. She was in the hospital for 6 days and then they sent her home. She has been in therapy for weeks and still has no vision in her right eye. we are going to try to get a second opinion as it seems its not getting much better. Once again thankful to know there are others going through this. God is in control and he is the mighty healer!

  • To the mothers of Marisa, Colin, Neely and Arleigh, I feel your pain through your words. There was a certain sickening feeling we all experienced as mothers which is undescribable. My son Evan was DX with ADEM 1/24/2012. No virus preceded or was detected prior to DX, nor did any blood or spinal fluids indicated elevated WBCs, nonetheless, the symptoms and MRI conclude ADEM characterized by white matter on the brain in couple different areas. It happened within hours on 1/23. Began with shaky legs and within hours was non responsive, eyes dilated and moving side to side (Nystagmus) We rushed him to NCBH here in San Antonio TX where ER doc told me initially it was just stomach bug due to Evan throwing up in car on the way. He had fallen 2 nights prior to and hit back of his head, I was convinced he had a head injury and insisted on cat scan. When it came back normal I insisted on MRI. I kept telling them as a mother, I had a horrible feeling in pit of my stomach that it was his brain. I am a LVN and could only imagine the worst. Upon shift change a different md ( and female I might add) heard me out, and got an ICU md to come eval Evan. Within an hour he ordered spinal tap and started EEG because Evan began toning. ICU doctor Dr. Zuckerman, Evans angel, contacted the prestigious Dr. Tomasovic (NUERO) at 11 at night. The EEG was a video EEG where Dr. T could see Evan from his house if need be. MRI done in morning and DX ADEM. The fall I was so worried about was possible the first indications of loss of muscle control, but I had no way of knowing at the time since it was so isolated. After 6 doses high dose steroids Evan was on his way, talking and laughing. His left eye was turned in, but nystagmus stopped. Sent home with steroids orally and returned to baseline Evan within a month…since then has had 2 relapses. Until now, I hadnt been able to look up any info on ADEM until now, it was too hard…but sitting here in the hospital once again with MRI results showing couple new areas in the brain, I’ve found the courage. My husband kept telling me what he found on ADEM but I was trying to have non biased expectations for Evan. I have the upmost confidence in our Nuero. Dr. T. Who is always willing to get colleagues input for optimal treatment, in most cases, he is the second opinion. In reading your stories, I feel comforted in a strange way…we are not alone. Thx u for aharing your stories, it has given me strength. I pray many blessings upon the kids and your entire families. God bless!

    Nicole

  • My daughter was diagnosed ADEM

  • Hello ladies, my name is alma perotto and on July 5th 2014 my seven year old daughter Myla Josephine came down what we thought was a cold, she was coughing and sniffling my in-laws had come into town and rented a room nearby with a pool. When we noticed Myla was coughing my husband, Chris and I debated on taking her home and naturally she was with her grandparents so that was a NO. My mom brought her back early Sunday on her birthday, stating she was vomiting and having fevers of 101, all she wanted to do was lay in bed, liquids weren’t staying in b/c she was drinking them to fast. The next day July 7th, I stayed home and noticed her right side of face was paralyzed, I am a CMA so I took my daughter to see a physician, that morning, he diagnosed her with bells palsy he also did lab work and gave me a liquid steroid for her face and an anti viral medications and told me that she was exposed to a virus and I should stay home with her till the fevers ceased. we battled with the fevers but her appetite came back she was a lot more alert but once in a while we noticed she would lay down to catch her breath she did complain of a headache once. I gave her the medications like clockwork all day and still no breaking the fever, they called me from the clinic and told me that it looked bacterial and sent a medication to the pharmacy amoxicillin but still no change in the fevers . On July 9th, Our nightmare started 3 o’clock in the morning she woke up and told me she was thirsty, so I got up and gave her a drink of water, she used her right hand to take the cup from me and by 730am she woke up and told me she couldn’t use her right arm, my stomach knotted and the little voice in my head, screamed “take her to the ER..NOW!!!!”, I called my husband and he quickly came and we both went to the ER the doctors were baffled but called Boise children’s hosp. in two hours our daughter had a CT, a lumbar puncture and an arranged flight to Boise for an MRI immediately when she arrived the hardest thing I ever had to do, was to place my baby in someone else’s arms and ask them to please treat her like their own, I remember the nurse who took her began to choke up and my husband at the last minute was able to accompany her to Boise. Our town ER had no capability to handle a child in an MRI setting. She did well in the MRI and as we were waiting for results, the nurse did a neuro test on her other arm and legs, two hours later when she came back Myla was unable to move her right leg, her left arm and her left leg was getting difficult to move, I was literally screaming at the nurse to get me the doctor and I have never seen a nurse fly out of a room so fast. Within 20-30minutes the doctor came back with the diagnosis of ADEM. And began steroid treatments, she regained some of her left leg back but very little of her right and no arm movement on either side. The steroids stopped the fevers and she regained consciousness but then we started the IVIG treatment and she seemed to come back, she is currently in rehab in Children’s Primary in UT. and is still our Myla very sassy, and chatty I thank god the ADEM didn’t take that from her she is learning to walk, she never lost control of her bowels but arm/leg movements are going to be a challenge, they tell us they cant really tell when it will all come back but I wondering from all of you how long did rehab take for all your children. And her face is still in paralyzed state, which she is getting speech therapy for and she can eat well. I am so glad I am not alone, I have been racking my brain out as to what I have done wrong, I have always vaccinated our children to keep them from having things like this, I never took our children to the doctors at first sight of a cold I always liked the thought of letting their own body fight it off and after two weeks if not any better or they seemed to get worse I took them in. By the way, all of the test for meningitis, west Nile, hepatitis etc… all of the test they did came back Negative, even MS test. The doctors in Utah tell me there are so many viruses out in the world they cannot test for them all and even if they did, what good will it do? So we will never know what caused this cluster of events. I only worry what happens when she goes back to school and gets sick? I don’t want to treat her any different and hurt her feelings but I will still worry should I still give her the flu shot the doctors tell me that will have to be my decision. What do you all think???

  • hello im abby im 17 years old i was pregnet while i got ADEM i had a hard time i got peralysed n got my baby out in 2weeks later when i turnd 37 weeks im praying so much to god so i can walk n move my right hand so i kan carry n enjoy my daughter her name is leylah shes now a mounth old i prey for streighnth n to get me stronger evry day n moment
    GOD BLESS YOU ALL N KIDS N EVRYONE

  • Hi, my daughter isabelle got the flu shot, her shool said it was mandatory, three weeks later she had adem with hemmoraging. She lost all function of her body and didnt even know who i was, its been 8 days and with the ivig she is getting bettet, but no where near baseline.

  • Hi
    Thank you for sharing your story it’s very helpful
    I’m writing you from the hospital right now next to me,my little boy Adam of 17 months he has ADEM please pry for him.

Leave a Reply





*