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

When does ADEM (Acute Disseminating Encephalomyelitis) occur?

Left to Right: Ava, Christy, Neely, and Jamie Thompson

Spring is right around the corner for those of us living in Greenville, South Carolina. We have already had enough warm, sunny days to give everyone a good dose of allergies and vacation-fever.  Everyone I talk to seems to be planning for summer vacations, outdoor sports, and fun at the beach.  We are too.  But there is something else happening this Spring that leaves me with anxiety and a strong desire to talk about Neely’s Recovery and ADEM.

If you are new to Neely’s story, then it is important for you to understand that no-one really knows why ADEM occurs. There seem to be several identifiable triggers to ADEM, however why and when ADEM occurs is still a mystery.

Over the last few years, I’ve ready everything that I can get my hands on about the condition.  I’m certainly no doctor, but I came across one, Dr. Benjamin Greenberg, that drew some interesting conclusions about the “when.”  Based on his research, there are an increased number of ADEM cases during the Spring/Early Summer months. Which means that along with the beautiful tulips, sunshine, and blooming trees the next few months are going to bring an increased number of ADEM cases in children. And that terrifies me. Not because I fear Neely will get sick again (although that is always a fear) but because I fear that there will be other children who are diagnosed either too late or not at all.   I can’t hardly bare the thought of it. And the only way to change it is to talk about it.

Awareness is key. Early detection and treatment is critical.  Trusting your instincts about your child’s health is paramount.  Share Neely’s story and others like it with your friends and family.  We may never know the number of lives that are changed from hearing it.

 

 

ADEM, Johns Hopkins, and Miracle Makers

What an amazing journey! I first learned about our friends Holly and Marisa, when a friend of Holly’s found this website and helped us to connect.

Holly and I talked for 45 minutes on our first call and I don’t think I even knew her name until the last few minutes. Yet, she immediately felt like family to me.  It happens every time.  The connection that I feel to other mom’s and families that have been through or are going through a traumatic illness is difficult to explain. That first conversation always brings an overwhelming sense of dread, relief and fear.  Dread that there is another family living the nightmare, relief that there is a chance for me to use our story to support and encourage them, and fear that the recovery they are praying for may not be the one they receive.

Over the next 5 months Holly and I continued to talk over the phone.  There were so many times that I wished we lived close enough to talk in person. I felt so far away – and wanted to do something more to help. But since we are on opposite sides of the country, it seemed crazy to even consider it a possibility.

That is until Holly and Marisa decided to travel to Johns Hopkins in Baltimore, MD to meet with several specialists that they hoped would aid in Marisa’s continued recovery.  My first thought was – This is one AMAZING Mom! To help put this in perspective, you should know that Holly is a wife and mother of 2 children. Not only did she travel 3000 miles with Marisa, who is still recovering from ADEM, to strange city to meet an entirely new set of doctors; but she had to leave a wonderful husband and 4 year old son behind for almost 7 weeks to do it.  Holly is one of the strongest and most courageous women I know.

I couldn’t wait to meet her in person and knew that Baltimore might be the best opportunity we would have. Johns Hopkins is a little over 9 hours from our hometown which means we could make the trip in a week-end so we decided to hit the road on Friday, September 30.  (Unfortunately Neely had a bad cold, and we felt like the 20+ hours in the car would just be too much for her so just Jamie and I that made the trip.) We stopped in Virginia on Friday evening to have dinner with friends and a good night’s sleep. Many thanks to Dustin and Mary for the hospitality.

(Incidentally, we also stopped in Virginia on the way home to have a delightful discussion with one of Virginia’s finest and get a souvenir speeding ticket. Many Thanks to the officer who pulled us over.)

We arrived in Baltimore before noon on Saturday. The last 30 minutes seemed to take hours and I literally thought my heart was going to beat right out of my chest.  I was so excited and anxious to meet Holly and Marisa. When we arrived at Ronald McDonald House (more on this later – it is an amazing place!) Holly and Marisa came down to greet us and we gave each other the biggest hug! I’m sure little Marisa was thinking, “Who is this crazy lady crying with my Mom?” but she followed her Mom’s lead and took us right into the toy room where we could get to know each other better.

We never missed a step and eased right into a conversation that took us well into the afternoon before we thought to stop for lunch.  Jamie got in some great playtime and color time with Marisa while Holly and I talked and talked and talked.   There was no question that Marisa had stolen the heart of everyone at Ronald McDonald House. People would float through the room from time to time and always stop to say hello and see her beautiful smile. She is such a sweet, happy little girl! I can only imagine how she will feel as an adult when she looks back on this time and remembers how much she was loved and hard her Mom fought to get her the care that she needed. (My prayer is that when that time comes, ADEM is nothing more than a distant memory from her childhood and that there are no visible reminders.)

Marisa is doing great.  If recovery has anything to do with attitude and spirit (and we know it does) than there should be no doubt that Marisa will eventually overcome all her current hardships. Her sweet smile can truly brighten the room and the light of optimism and enthusiasm in her eyes is something from which we could all benefit. I just couldn’t stop hugging her!

We all went to lunch, visited the National Aquarium, walked along the Harborplace River Walk, and even squeezed in a late dinner.  Marisa was such a trooper. She played and laughed and even managed a short nap while we walked and talked all over Baltimore. It was a wonderful day and the time seemed to go by so quickly.

After dinner there was still one thing left to do.  I’d hoped to have an opportunity to see the statue of “The Divine Healer” that towers over the administrative lobby of one of the Johns Hopkins buildings.  And I am so glad that we were able to go there together. It still gives me chills to think about that beautiful room and all of the healing prayers that have been spoken there. I took a few pictures but must apologize that they do not even come close to showing the true awe that comes with seeing it in person.

Donated to the Johns Hopkins Hospital by Baltimore merchant and philanthropist William Wallace Spence, “The Divine Healer” is a truly majestic statue of Christ that has offered hope and a place of quiet reflection for patients and families since 1896.  People come there to pray for healing, among other things and to find inspiration. But what they leave behind will literally bring you to tears.

Carefully placed at the feet of Christ are flowers, letters, tokens of affection, cards and pictures (mostly of children). You can’t help but feel the prayers that must have accompanied each piece and the pain and hope of each person that left them there.  Over 100 years of hopes and prayers fill that room.

It is an overwhelming experience and something that I will never forget.

After a day of laughing, crying, walking in the rain, and talking until our voices were horse we couldn’t think of anything better to do than take pictures. I say that in an effort to apologize for our appearance J I hope you enjoy the pictures.

It was an amazing trip that I would repeat hundreds of times if the opportunity continues to present itself.

I’m so grateful to Holly and Marisa for spending the day with us but I am even more grateful for their friendship and their ability to inspire others.

Ignoring geographic boundaries, fighting against all odds, and refusing to take “No” for an answer; Holly and Marisa are miracle makers and the world needs more people like them.

 

Joey is a survivor of ADEM

I never stop being amazed and touched by the stories that come to us through this web-site.  The brave mothers, strong children, and newly empowered patients that have fought ADEM and won are extremely dear to my heart.  It is stories like this one of Mary and her son, Joey, that remind me how important it is to be your own best healthcare advocate.

I can’t thank Mary enough for allowing me to share her story through NeelysMiracle and wish Joey continued health and happiness.

This is Joey’s Story, told in Mary’s own words… (more…)

It's all about the connections

Shortly after lunch I received an email from a Mom who had gone to Neely’s Miracle looking for help and contacted me.  A friend of a friend of a friend (that’s exactly how it should work) had told her about NeelysMiracle.com and encouraged her to check it out.  This Mom had just learned that her 2 year old little girl has ADEM (Acute Disseminating Encephalomyelitis)

Less than 24 hours passed before she learned about the website.  As it turns out,  they are being treated at Greenville Children’s Hospital and I was able to go and visit in person yesterday afternoon.  While I am dreadfully sorry that her sweet little girl has ADEM – I am relieved that we were able to connect and hope that I can be a source of support for her. (I haven’t yet asked her Mom if it is ok to tell her story – so I can’t give you to many details. ) When I was in her shoes, I would have loved to have another mom to talk to.

Because I don’t want you to worry (and I know you will), I’ll tell you that the little girl is doing very well.  While I was visiting she was playing and talking – She really looked great.  Her Mom and Dad have lots of hope and a great support system.  I was so happy to see that they were doing so well.

Just like us, getting to the prognosis was difficult.  There were told many times that “it was just a virus” and were sent back home to wait it out.  Thank goodness this family didn’t accept that answer.

Another Parent like me

Thanks to The Transverse Myelitis Association, I was given the opportunity to reach out to a family that is recovering from ADEM. (I haven’t yet asked her parents permission to share her story – so I won’t share any personal details here until I do.)

Suffice it to say that she is a 3 year old little girl (with features that are strikingly familiar to Neely – that was a shock.)  She developed ADEM in May this year (Neely’s ADEM came May last year) and is doing really well in her recovery. (more…)

What is a Neuroimmunologic Disorder?

It’s hard to say, hard to spell, and hard to deal with, but over the last year this is how I learned to understand it.

It includes things like ADEM, Meningitis, Encephalitis, and hundreds of other conditions. Pardon the analogy, but this is one of the best descriptions that I have found for helping parents (or patients) understand Neuroimmunologic Disorders.  Here we go… (more…)

What is ADEM, Acute Disseminating Encephalomyelitis?

Many of you have asked exactly what is ADEM or Acute Disseminating Encephalomyelitis? So here  goes…

Often referred to as ADEM,  Acute Disseminating Encephalomyelitis essentially means you have inflammation in the brain that is attacking and destroying tissue.  (Imagine a litter of kittens playing with a basket of yarn. The kittens are the inflammation and the Yarn is the brain.)

ADEM is a Neuroimmunologic Disorder.  It is a rare condition that occurs in approximately… (more…)

Great Visit with Dr.Morales this Week

We had a great visit with Dr. Morales this week. Neely’s continues to do well and is tolerating her meds as well as we could expect. Keppra (anti-seizure) can cause irritability and insomnia – so we are always battling bedtime and tantrums. As she grows, it becomes necessary to increase her dosage accordingly, and this week we increased her dose by .5ml per day. (She takes a total of 6ml each day) It doesn’t sound like much, but can make a big difference in behavior. (more…)

Actual Journal Entries from Neely's Mom

On May 15, 2009, my 2 year old daughter Neely caught a virus that triggered an immune disorder. In less than 12 days she went from a healthy toddler to a heart beat and a shollow breath.  Our pediatrician at the time did not meet our expectations for care.  I don’t think they were listening to me, they did not refer us to a specialist, and they kept sending us back home insisting that it was just a virus would work itself out.  I believe they were wrong and it almost cost us our daughters life. 

We have often shared her story, but never shared the details of those first days. I decided to publish these excerpts from my personal journal so that other parents might benefit from the lessons we learned. Knowledge is Power!  Make sure you know your doctor and know what to look for when you are choosing a pediatrician.  If you are a parent, you NEED to read this. (more…)

Know what to look for when you are choosing a pediatrician.

This year felt like 10 years. As the one year anniversary approaches, I have found myself constantly torn between relief and dread. Logically, I realize that Neely has surpassed every expectation this year. She performs at or above age level in every category for which they provide testing. What parent wouldn’t be thrilled with that news?

Emotionally, I can barely manage the panic and fear that sneaks into my thoughts when I least expect them. It’s true what they say – That ignorance is bliss. One year later, we have all come so far. It is really hard to comprehend where we were just a year ago. It’s changed us in more ways than I can count. (more…)

It Shook us to the Core

It really is true that we all go through life thinking that “It” only happens to other people. But when “It” happens to you and your family – you are forced to look at life from a different perspective. Make sure you know your doctor and know what to look for when you are choosing a pediatrician.

On May 15 this year my 2 year old daughter, Neely, caught a virus. There wasn’t anything special about the virus – just your typical 24 hour stomach bug. In trying to fight it off, Neely’s immune system became confused and began attacking her brain and spinal chord. It is a rare condition called Acute Disseminating Encephalomyelitis (ADEM) and only occurs in 1 out of every 1.2 million children (approx). It took less than 12 days for Neely to go from a healthy happy Toddler to a heart beat and a shallow breath. That was all she could do. (more…)

Results from this weeks EEG

Over the last 2 weeks Neely has been having 10 to 15 “episodes” per day. The episodes mimic the signs of a seizure and caused enough concern for her Neuro-team to schedule a long-term EEG. (4-6 hours in length)

Neely did great during the test. She gets really nervous now before and during tests…who wouldn’t? Luckily (even though that sounds weird), Neely had 4 of these episodes during the EEG so we will be able to evaluate her results with confidence knowing that we could isolate those episodes and see exactly what is happening during those times.

Her Doctor is confident that the episodes she has been experiencing are not seizures. This is great news! Neely still has slower brain activity coming from the areas where she has scar tissue on the brain (a direct result of ADEM) At this point, we have to assume that those episodes are a side effect of her medicine. We hope that as she continues to adjust to those meds….the side effects will subside.

We are grateful for the good news!

I just talked to Dr. Morales about the results of Neely’s EEG last Tuesday. He said the “episodes” that we have been seeing are NOT seizures. Great news! He said she still has a tendency for seizure (slower brain waves from the scar tissue area) but that those “episodes” are likely a side effect from the increased dose of meds. We are just going to continue to watch her to see that the side effects subside as she adjusts.

Home and Feeling Better

Neely’s MRI and EEG confirmed that the seizure activity she experienced this week-end was in fact a result of her ADEM. (This is the best news we could have received given the circumstances)

It appears that there is no permanent damage form the Seizure activity this week-end. She has bounced back and is already busy playing with Ava. What a relief!

We are going to spend the next few days resting and counting our blessings.

New MRI results are in….

Neely went for her first “out-of-the-hospital-MRI” on Friday morning. Her Doctor (Greenville, SC) has warned us to keep our expectations in check – while we would all love to see a “clean MRI” – that was not going to be a reality. Recovery from ADEM or Acute Disseminating Encephalomyelitis is very slow.

The IV was without a doubt the hardest part for Neely! It took about 10 seconds to get the IV in her foot, taped down, and wrapped up in bright orange wrap. Neely took one look at the finished product and started to cry. Worried that she was in pain, we asked her what was wrong and if she was ok…..Her reply was simply, “It doesn’t match, mommy!” She wanted the pink wrap (which would have matched her pink and green outfit) The nurses were kind enough to comply.

Our prayers were for the the MRI to show significant improvement – and prayers were answered! Neely showed an 80-90% improvement over the last test. There is still some swelling and inflammation present – But the tests indicate that she is still healing, and we should continue to see improvement.

We are all working hard with Neely in therapy, the entire family gets in on the action. She is currently seeing 2 speech therapists and has Physical Therapy on both water and land. There are 3 doctors and 5 therapists that currently oversee Neely’s progress and treatment plan. Trying to master her schedule is a full time job – unfortunately, it doesn’t pay much. :-)

Our treatment team has decided that it would be best for Neely to skip pre-school this year. The chance of her having a recurrence would be increased in an environment where children (and germs) are rampant. And that is a chance that we are not willing to take.

We will just keep putting one foot in front of the other….

After 18 Days..

After 18 ridiculously long hospital days for ADEM (Acute Disseminating Encephalomyelitis) recovery, the Thompson family is back together under one roof. Neely came home yesterday afternoon!

I was with Christy at the hospital when she got the news and I honestly saw her shoulders relax with the deep exhale she enjoyed. Christy and Jamie have been so ready to have the whole family back home again. Ava said it best when she hugged her mom and said, “You are coming home? Oh GOOD! Now I can sleep in the same bed with you!”

It is still a long road of recovery ahead but we are grateful for Neely’s current health. Her doctors foresee that she will continue with her therapy treatments for the next few months as the swelling in the interior of her brain continues to diminish. They also warn that although Neely looks completely healthy on the outside, her body is still healing and repairing on the inside. She is scheduled for a follow up MRI in two weeks.

She will continue to take anti-seizure meds, steriod treatments, and immuno-suppressants until the doctors feel they are no longer necessary. Christy and Jamie have been instructed to keep her away from crowds and public places for the next three months to stave off infection and sickness since her immune system has been weakened.

We are so grateful for the amazing care and treatment the medical professionals at Hotel GHS have given to Neely and her family. I have said it before, but it needs to be said again, Neely’s recovery has been nothing short of a miracle, and there is only one we can truly credit for that!

The Neely Update for Wednesday

The results from her MRI are in. Hopefully I can explain this well. The MRI shows that the inflammation on the outside of her brain has gone down significantly, if not completely. However, the inner ‘gray matter’ part of her brain still shows inflammation and lesions. So if I understand this correctly it means that her brain is aware of and receiving stimulus but is unable to process sometimes and so she gets confused.

Her speech is much better. She has been sitting up in the bed and playing a good bit. She has so many medical professionals coming in to see her everyday. She has 3 therapists, child life specialists, a team of pediatricians and neurologists, and about 8 nurses that tend to her. Visitors are still limited because of all that and also because she is way overstimulated at times by noise, movement, color, etc.

We are still taking it day by day and unsure of when she will be able to come home. The doctors do expect that when she does leave the regular hospital, she will move to the Roger C Peace Rehabilitation Center for inpatient care before she can go home.

Neely looks so much better. Christy sent these pictures of her waiting for her MRI.

The Neely Update

I talked with Jamie earlier today and he reports that they removed the feeding tube from Neely sometime during the night to help her rest better. They will need to reinsert it if she doesn’t want to eat on her own. She has sipped on some ice chips and sweet tea today. She is not resting as well as we expected. She slept last night from about 2am to 7am. That was her first nap in more than 24 hours. She is trying to rest today but Jamie says she is pretty fussy. I am sure that she is just uncomfortable. But she has to be relieved that the feeding tube is gone. It was worrying her to pieces last night.

The doctors have her on several antibiotics to help with infection, Zantac to calm her very empty tummy, anti-seizure meds, and some relaxation meds.

We are still looking for any and every sign of progress. This morning Jamie asked her if she wanted to watch TV and she said “Yes.” Its the little things in this slow progression to recovery. It seems likely that she will remain in PICU for the rest of the week and maybe through the weekend, but rest assured that she isn’t going anywhere with out her Baby doll (named Ava) and her baa-boo (her blanket). These two things are her favorites and an amazing comfort to her.

I will post more when I talk with them again tonight. Maybe I can get some more pictures on here.

It Has a Name

Neely’s condition has a name now.
Acute Disseminated Encephalomyelitis.

Her doctors says this is an extremely rare condition that he has only seen a couple of times in his 30 year career. This is how her doctor explains what has happened. When Neely had the stomach virus (now almost 2 weeks ago) it was a tough one. A 4 day virus. Her immune system was on it and came out swinging. Her immune system produced so many overzealous antibodies that they began to attack her brain. I know that this sounds very scientific here, just bear with me, I am not a doctor! Her brain has become inflamed and swollen in patches over her head. This has created those seizure like symptoms that I posted about earlier. To combat this inflammation, they are giving her steroid treatments. We have already begun to see the progress of this treatment. Neely was able to move her left toes, blink her eyes, and make a fist on command. These are huge accomplishments.

Currently, she is in PICU at Greenville Memorial. She has a feeding tube and brain monitors all over her head. To keep her from pulling at these monitors, they have wrapped her head in a huge bandage. Her mother lovingly refers to this as her “snow cap.” It looks as though she will be in PICU for a few days. We are not sure when she will be able to come home.

I will continue to post as we learn more. Thank you all for your thoughts and prayers. They mean so much to all of us.