"The difference between life and death...
Is taking an active, aggressive approach to your health care. Be an empowered patient."
Know what to look for when you are choosing a pediatrician.
Article posted on Wednesday, May, 5th, 2010 at 12:39 amThis 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.
Neelys Sister, Ava - Age 6
Ava is more protective than any big sister you’ve ever seen. She’s terrified of the word hospital, knows all the Speech and Physical therapy prompts, and understands the impact of germs better than most adults. She knows the difference between an Intensivist and a Neurologist, can clearly identify even the mildest signs of seizure activity, and still remembers where the best fish tanks are in the Hospital/Doctor’s Office. (Don’t be fooled – there are more than you could remember.)
Jamie and I quietly freak-out when there is a virus going around the schools, when we hear about any brain injury, or if Neely zones out for more than 10 seconds.
We have the Speech, Physical, and Recreational evaluation tests practically memorized. (Which means Neely must too!) And we have zero-tolerance for any Doctor that has never learned to listen effectively, appreciate the perspective of the parent, or realize when they are in over their head. (Don’t be fooled – there are more that fall into this category than you realize.) I watch Neely and wonder how much what she will become, is because of what she has gone through this year. I recognize that the same stubborn streak that helped her fight so hard to recover is also responsible for her refusing to pick up her toys or respond when you call her. And I have a hard time reprimanding that defiance because of it.
Our House is full of doctor toys complete with monogrammed lab coats and we have more band-aids and bandage wraps than most doctors offices. Just before Christmas Neely handed me her Dolly. (The same dolly that went through every test, appointment, and therapy se
ssion with her.) She said, “Mom, I don’t want Dolly anymore, she is sick.” I put Dolly away and Neely has never asked for her again. I think that was a physical example of Neely saying, “I’m done. It’s over.”But when you have a year like we’ve had. It’s never really over. You always wonder if the next virus to come along will send you back THERE again. You wonder if she will start to fall behind when she hits that next growth milestone.
Will she ever be able to stop taking anti-seizure meds?
How much will she remember about what shes been through?
Will this year have been the trigger for some other condition in the future?
We will never know. And that isn’t all that different from the same fears every parent has, Right?
I think every parent wants their child’s hardships or even death to have not been in vain. You want people to remember, learn from, and to somehow be touched by their life and experience.
We have love, health, and lots of laughter. We have so much more than we dared to hope for a year ago. And now we are looking for ways, to share our experience, to teach others what we have learned, and to make it a little easier for the next family that travels the same road we have.
We aren’t quite sure what is next for us….but were more prepared for it than ever. Knowledge is Power! Make sure you know your doctor and know what to look for when you are choosing a pediatrician.
Neely is amazing!
Lisa Dacus Helvey June 9 at 9:33am Reply
I think it’s amazing that you’ve done this. I hope it helps you in your “recovery” process to empower other parents. I can only imagine what a nightmare this was for you. I love hearing Ava in the videos encouraging her little sister-they are precious. Can’t wait to see you on TV!
I am a friend of Carrie’s and she has shared Neely’s story with me but I don’t think one realizes the magnitude of certain situations until reading all this information. I am so happy to see that Neely continues to do well. I have a daugther close to the same age and have recently switched doctors. Reading Neely’s story reassures me that I have made the right decision. Thank you for sharing Neely’s story with the world and touching so many lives. Neely and your entire family are in my continued prayers.
God Bless,
Amber
I feel your pain and Neely’s pain during your awful journey! My daughter was diagnosed with ADEM in Apri, 2010 and we (thought) were fully cured but now most recent seizures have begun.
I am fighting a war path with God. I am now on here researching on my own for answers, since I do not feel I am getting them from the team of doctors on her case. Believe me, I am agressive and like you, will continue to push for a diagnosis. I have to pray it’s curable!
Thank you for having a similar story to mine out there, it gives me hope.
Praying 4 you and your child, Shelley. And for Neely and her family! We’ve done the ADEM thing, too. My son developed it over Christmas in 2008/2009. We were in church and the sermon was about God/Jesus never leaving you….Markus had had a persistent headache for 3 days…Markus looked at me and said: “God has left me.” I asked him why he thought that. He answered: “He can’t cure my head!” He knew himself that something was majorly wrong (as did I). The docs had sent us home repeatedly. The ER Docs at the children’s clinic said no MRI would be scheduled until we completed a migraine journal, visited an eye doc, etc. Our pediatrician called the neuro-ped after the 11th headache day and told him he’d better schedule the MRI. He did and then we got the diagnosis. From then on his condition worsened. Apparently, the cognitive areas of his brain were more affected. His brain was covered with lesions!!!
It’s true – trust your gut instinct
God bless us all, as we have suffered a most horrific challenge of parenthood with our children. Our daughter, now 30 and has a Bachelor’s degree, was diagnosed with ADEM when she was 14. After two weeks ill at home (seeing our family doctor EVERY day) declining literally everyday and after several days in the hospital we were care flighted to a Children’s Hospital. Thank God for the nurse that told us we needed so much more care than we were getting there or from the doctor we were using. We were told she had meningitis! again…, then told us it was MS. Some of you mom’s speak of fear of the future, 16 years later I still have fear of the future. My daughter suffers from muscle and joint pain every day. She has had doctor after doctor and test after test. The probably of her pain is due to the massive steroids used to save her life during those long days and nights when I wasn’t sure my daughter would live, and if she did what kind of life she could expect to have. God and I had many “conversations”, and yes I was mad at God, but that’s ok He could handle it. You all know what we have gone through; just know that life can be “normal” again. My daughter is one of the strongest most determined people I know. She refuses to accept defeat or settle for less in anything. She refused and still refuses to use a handicapped sticker and tells me to this day, “those are for people that really need them”. There are days she is one of those people. There were no support groups or web pages in those days; you ladies are so fortunate! I have a co-worker whose daughter is 13 now. They have been going through the same thing for about 7 or 8 years. It has affected her sight as well. Her problems seem to come back periodically, yet it is always the same answer, auto-immune. I am certainly going to direct her to your page. Thank you so much and know my prayers are with all of you.
Gloria, SaHero, and Shelley – You all are a powerful group of Moms! Keep up the fight and thank you for sharing your stories. There is power in numbers and the more we support and share with each other the better we will be able to support our families. Be empowered!
Thank you so much for the positive story. The daughter of a dear friend of mine who is also my daughter’s best friend -4 years old – has had a terrifying week of sudden prolonged seizures, lack of coordination, mood swings, absence and it looks like she may have ADEM. I have been sitting in front of the computer just sobbing trying to learn about this. It is really helpful to read your detailed story. I pray that my friend’s baby will recover as well as Neely.
Jacqui,
I am so sorry to hear about your friend and relieved that Neely’s story may be able to help in some way. Please don’t hesitate to call or pass my contact info to your friend. You can find it in the “About Me” section of this website.
Prayers and Prayers, Neely’s Mom
We too are on this journey our 13 year old was diagnosed with ADEM after a severe sinus infection and they too wanted to tell us he was medically stable!! I find myseif questioning if we are doing everything we can. Thank you for shring your story I feel less alone in this battle.