"The difference between life and death...
Is taking an active, aggressive approach to your health care. Be an empowered patient."
Top 10 things you should never fear saying to your Doctor.
We’ve all been there – Standing in the exam room, listening to the doctor explain the probable causes of your symptoms and offering his/her opinion on what your next steps should be. “Opinion” is the key word there. However educated that opinion may be, it is still just one theory. That is why is so important for you to trust the person who is offering that opinion to you. Choose your doctor or pediatrician carefully and choose your course of treatment even more carefully. (Check here to see how I find/evaluate doctors)
With that being said – Here are the top 10 things that you should never be afraid to say to your doctor.
1.) I want a second opinion.
2.) I don’t feel like you are listening to me. I know “Me” better than “you” do and this is not normal for “me”.
3.) I want a <fill in the blank with your medical test here.> (more…)
Introducing Sydnee...Another Happy Ending
No long ago I mentioned finding another Mom like me. That Mom’s name is Melanie Barrett. She reached out to me through NeelysMiracle.com and we became instant friends.
Not long after we met I asked Melanie if she would be willing to share her story through this site. She agreed and started (what I know is) the very difficult process of writing it down for the first time. This is not an easy story to read. It is a story of pain and frustration beyond comprehension. But is also has a very happy ending. If you have trouble reading this post, remind yourself how difficult it was for Melanie to actually live through it. Every Mom deserves a chance to tell their story – And every Mom deserves to be celebrated for having the courage to be aggressive advocate for their child.
This is Sydnee’s Story – Told in her Mothers own words. (more…)
Traits of a Good Pediatritian
Below is a list of what some of you have shared with me….but I’d love to hear more. What do you look for in your pediatrician/doctor? (more…)
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…)
Christie Pediatric Group Never Apologized
So many of you have asked me about Christie Pediatric Group’s (our former pediatrician) response since Neely’s illness that I thought I should share my answer via this blog.
They never apologized. (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…)
How a Parent Copes?
It started immeadiately…but then didn’t go away easily. While we were in the hospital, I really didn’t get much sleep. A couple of hours a night at best, and maybe a little dozing in the chair now and then. It just becomes part of the routine, so when you get home and still don’t sleep, it doesn’t feel abnormal.
The problem was that every time I closed my eyes, I saw a slide show from that infamous night in the hospital when Neely’s life was hanging by a thread. (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…)
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 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!
Neely Update-Continuous
Christy just sent a message that she is having an EEG now followed by an MRI. Please pray that these tests go well.
* 9:46am: Doctors have noticed light seizure activity from the EEG test. They are going to medicate for that. She is going in for the MRI at 10:30am today.
* 2:30pm: No new news. No results from MRI yet. Neely is resting.
* 3:37pm: The doctors have decided to move Neely to ICU to monitor her seizure medication more closely.
Apparently this virus is wreaking havoc on her nervous system. But we know that her body may be little but it is tough. She is definitely a fighter! She got a double dose of that from her mom and dad!