"The difference between life and death...
Is taking an active, aggressive approach to your health care. Be an empowered patient."
Who are your Doctor Heroes?
We have heroes! And I bet you do too.
Since sharing Neely’s story and our negative experience with Christie Pediatric Group (in Greenville, SC), I get all sorts of questions about the doctors that we are using now, who and how we choose a physician, and what is important to us when we’re looking.
And while we all realize that Doctors are only human, there are a rare few that truly go above and beyond to connect with and help their patients. (not unlike any profession really, some people come to the battlefield ready to fight while others coming hoping to hide behind the bushes!)
Our Heroes are the Doctors and Nurses that cared (really cared), listened, took action, and treated us like we were their family. (Because we consider them part of ours.) Tell us about your heroes – If you know of a doctor or nurse that is perfectly described as a Hero, tell us who they are. This audience would value your doctor recommendations. You never know when we might need them.
One Doctor from Christie Pediatric seemed Sincere
I would be remiss if I didn’t mention one Doctor from Christie Pediatric Group that showed us sincerity. Ironically, in our 6 years of being patients at Christie Pediatric Group, he was the doctor that we had seen the least of. (There are 9 physicians currently in the group. 5 of the 9 doctors were involved in Neely’s case in some way. Some just over the phone)
James B Nichols, Jr (more…)
Finding a Mom like me
Telling Neely’s story and sharing our experiences with Greenville, SC doctors has been the best thing (aside from her recovery, of course!) that has come from our year of ADEM recovery…Because it has opened the door for us to connect with other families like us.
If you only know me from reading this blog – then you might be surprised to learn that I am a very private person. We’re a private family. Sharing our innermost thoughts and concerns is typically something that only happens in the security of our own home. It was pretty difficult to hit the “publish” button the first time.
So imagine my excitement when after only 2 weeks of the site being live, I received and email from a mom just like me. Her name is Melanie, and the email started like this:
“Hi…. A friend of mine just sent me a link to your blog. I read all of it… most of the time with tears pouring down my face. We share a very similar experience… mine happened at the end of January 2010.”
I couldn’t read the email fast enough. Just like me, Melanie had felt…. frustration from doctors that wouldn’t listen, helplessness from symptoms that couldn’t be explained, despair from literally feeling your child die right in front of you, fear of next steps and the sweet sweet relief of improvement and progress.
We met for coffee and were instant friends. It was an odd feeling. We’d known each other for less than 2 weeks and yet I felt as though we were old friends. That conversation was the validation I needed to continue sharing our story. Hitting the “publish” button just keeps getting easier.
There are lots of Moms (and Dads) like us. And I am convinced that if we just keep talking we can make it a little easier for other parents who may be just starting the journey that we are already adjusted too. It won’t be long before you start to see other parents stories posted here as well. Stories like Melanie’s and many others.
Be your own best health care advocate. Know and choose your doctor carefully.
Choosing Your Pediatrician
This is worth repeating…
Finding a physician that you feel comfortable with, is conveniently located to you, and has the hours of operation that you need only get you to the starting line. “Well Visits” and “Check-ups” are easy. Here are a few things to consider whether you are looking for a new physician or evaluating the one you have. (You should always be evaluating the one you have.)
- Know Your Doctors philosophy on referring to specialists
- Ask if your doctors office conducts patient satisfaction surveys or evaluations
- Ask about hot-lines for patients or parents of patients that want more information (more…)
Finding a Doctor, Again
Obviously, after living through this experience with Neely, our approach to finding, investigating, evaluating, and choosing a physician of any kind has taken on a whole new meaning.
This last month, we were able to put our new method to the test. My oldest daughter (and Neely’s big sister) needed to have a consult with an ENT (Ears, Nose, Throat Specialist). Our pediatrician (who we also went to great lengths to find and evaluate) recommended we see Dr. Michael Greene, MD of Provident ENT.
These are the steps I followed before and after our appointment to evaluate Dr. Greene as a doctor and to be able to make an informed decision about whether or not we would allow him to operate on our little girl. (more…)
Just a Mom Wanting to be Heard
It’s why I built this site…
Neely’s recovery from ADEM (Acute Disseminating Encephalomyelitis) is just part of the story I hope to share with this web-site.
Neely’s condition and recovery have inspired many families over this year to share their stories with us. We’ve heard stories of amazing recoveries, rare conditions, frustrations with doctors (primarily pediatricians), and health care bureaucracy. While there are wonderful hospitals (like Greenville Children’s Hospital) and amazing doctors (like Dr. Augusto Morales) that are truly focused on patient needs and healing; there are still far to many opportunities for patients to fall through the cracks. (Read about our journey)
(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…)
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.
A Day of Tests…and now we wait
Yesterday, Neely was monitored for additional Seizure activity as they increased her doses. Her activity level came back and she was responding normally.
Today we were scheduled for and MRI and EEG. Neely’s Neurological team isn’t sure why she had the seizure. There are several theories. Without a doubt, this is a complication of ADEM. It is possible that her existing inflammation (which has been slowly improving) took a turn for the worse. This could also be a recurrence of ADEM (meaning we would be headed down the same path we went in May) or this could be the first presentation of Epilepsy, which ADEM patients can develop as a result of the condition.
We are in hopes that the MRI and EEG will give us a clear indication of the cause and help us to determine the appropriate next steps.
Neely is exhausted from the day, but is in good spirits and has a healthy appetite. All good signs…
Back the the Emergency Room with Neely
On Saturday, We were out for a typical day of shopping and errands in Greenville. Neely had been laughing and playing with Ava as normal. We were in the store looking around when all of sudden she wouldn’t respond to a question that I asked. One quick look at her face and I new we were in trouble.
Neely’s eyes were dilated and jerking, her face was expressionless and her shoulders and she lost movement of her arms and torso. She only muttered a few words….”its dark” (her vision was gone) and “hold me.” Jamie and I ran for the car as I dialed 911 and they instructed us to go to St. Frances Hospital (Pelham Rd) emergency room so that they could stop the seizing.
We were there for about 90 minutes, had a CT scan and blood work and were then transported to GVL Children’s Hospital where Neely’s team of physicians were waiting for us. Throughout the night the seizure activity subsided but Neely was very weak and tired.
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 for Friday
Neely slept through most of the night last night-YEAH! It is such a blessing for her to get the rest that her little body needs. Christy says that she is much more alert this morning and she is looking around the room like she is seeing it for the first time. Christy says that she is a little timid because of it. So it seems that her vision is getting clearer. She says that Neely is trying to speak at times but it is difficult to understand.
They have not had to reinsert her feeding tube and they allowed her to rest without her ‘snow cap’ through last night. I think they are going to put it back on at some time this morning. After a review of her EEG, the Doctor says that the majority of her brain is showing ‘normal’ activity, but there are some questionable reports showing from the back of her head.
Oh behalf of Christy and Jamie and family, thank you! thank you! thank you!, for the outpouring of love and support that everyone has shown this family. Our friends and family have brought food, toys, gifts, cards, research, prayer, encouragement, and love continuously. We are all very grateful!
Uncle Potter and Aunt Carrie are going to check-in with Neely-bug this evening, so I am sure we will have more to report then.Some background on Neely’s story here.
***3:30pm update on the update***Around lunchtime today, Neely woke up from a nap and had applesauce for lunch. After lunch, she noticed the Tom and Jerry on the TV. She and her big sister, Ava, LOVE Tom and Jerry…who doesn’t?? Christy leaned down about that time to sit beside her on the bed and Neely, still watching Tom and Jerry, giggled her sweet little giggle!!!! The nurse who was in the room at the time, turned to Neely and asked, “Was that funny?” Neely replied,”you can come down too.” In Neely-speak, she was asking the nurse to lay with her on the bed too. It was very softly spoken and a little slurred but you could hear those words. Hallelujah! Those five little words are packed with so much hope and encouragement, I just had to share!
***5:30pm***Christy also told me that Neely clearly had full use and control of her facial muscles and she was able to move her arms and hands a little. I still didn’t think we were ready for smiles and laughs…but she just sent this picture! Go, Neely, Go!
