Back in August, a young boy, age 14, from the Quad Cities, lost his life due to complications from ADEM. I was so shocked and upset to see this, as my son, now age 13, is a survivor of ADEM. There were rumors that this child had just received the Gardasil HPV vaccine. I don’t know if this is true, but being vigilant, I listened to my mom, and did some research. I found some research papers on line that showed there have been a few cases of ADEM linked to this vaccine. The numbers are small, but when your son has already had it happen to him twice, you don’t take those stats lightly.
I am taking my son, to get a physical today. He is 13 years old. He is eligible to get the HPV vaccination. I am terrified to do it. Normally, I am one to believe in vaccinations, in order to protect everyone. In this case, I am so afraid. I want him to have the vaccine, but I don’t want to put him at risk for going through the ADEM nightmare again. I plan to wait to have this vaccination done. I am hoping for more research to be done, before the time frame is up where my son is still eligible for this vaccination. Currently, I believe it can be done between the ages of 9 and 26 years of age.
I am not writing this update to sway anyone one way or the other, in regards to vaccinating their children. I am writing this to warn you of some of the symptoms regarding ADEM, at least from our experience in 2014.
If you take your child in for immunizations or if they have been sick, and then you begin to notice any strange symptoms afterwards, even if it’s just that your child is not quite, him/her self, please don’t take these symptoms lightly. Don’t wait. Trust your gut, and go to the doctor!
This is what we experienced:
Initial Symptoms
- Severe headaches bad enough to wake one from a deep sleep
- headaches that no headache medicine will help
- extreme exhaustion, lethargy during the day
- extreme complacency, “I don’t care” , no opinion on anything, no appetite
During the worst part of it
- loss of function on one side of the body or the other
- loss of hand eye coordination
- loss of proper speech
- inability to urinate
- inability to walk or sit upright
What is ADEM?
ACCUTE DISSEMINATED ENCEPHALOMYELITIS
Random areas of the brain and spine can be attacked. Essentially, its as if the body’s immune system is attacking the body, causing inflammation to the coating around the nerves(myelin), in random areas of the brain and spine. Different parts of the body will stop working properly, depending on where the inflammation on the nerve coating occurs.
If I remember correctly, the neurologist explained it like this: it’s kind of like circuit wiring, if there is a short, or a nick in the wiring, the electricity is unable to complete the circuit. Incomplete circuits make functions, like turning on a machine, or a light, unable to happen. So if you have inflammation on a part of the brain that sends nerve signals to your fingers, your fingers might not react as sharply or quickly for certain tasks. Or if another area is effected, you might not be able to urinate, if another area is inflamed, you might not be able to walk properly.
The inflammation can be reduced by giving the patient high doses of IV steroids. We were lucky enough to have been in the hospital already when our son’s extreme symptoms developed, so he could be put on steroids quickly. Another option for reducing inflammation is also IVIG, which seems to have less side effects than the steroid treatment. Had I known this, at the time, I would have pushed for IVIG instead of steroids, as they had a lot of emotional side effects for our son.
Written in 2015
Over the Christmas 2014 holiday, mine and my family’s life was turned upside down by a mysterious disease that started out as a common cold with a runny nose that progressed into flulike symptoms, that progressed into pneumonia -like symptoms, that progressed into a massive sinus infection, that progressed into severe headaches that woke him from a deep sleep, all within about a week and a half. He became complacent, lethargic, not himself. During the day, all he wanted to do was sleep. He just didn’t seem to care about anything or have an opinion about anything anymore. He normally had an opinion about everything! He was eventually admitted to the hospital when white blood cells were found in his spinal fluid from a lumbar puncture taken the second time we went to the emergency room. We were the unfortunate winners of the A.D.E.M. lottery, and my son quickly changed from a normal, 9-year-old boy, to a child who was quickly deteriorating and in a relentlessly severe amount of pain. It was almost unbearable, for us, as his parents to watch him suffer his way through the roller coaster ride of ups and downs of the disease.
I wrote the poem below, on our first visit to the emergency room, before we even knew what kind of journey we had ahead of us. I wrote as I sat silently, watching my son suffer through headaches while an I.V. dripped fluids into his veins. I am sharing this in hopes of helping other parents who are experiencing ADEM, with their own child. I will tell you, it will get better, but it will take time. The only way we were able to survive this experience was through the countless prayers that were made in our son’s name, lifting him up, lifting his doctors up, lifting us up. It is a walk that is so much harder if you try to do it alone.
We are all still trying to wrap our heads around what happened, but we are all getting stronger day by day. My son spent nearly 3 weeks in the hospital, one week in an in-patient rehab center, and has now completed his second week of out-patient rehab for physical therapy, occupational therapy, and neuro feedback therapy. He will likely be ready to go back to school within the next week or two, and his personality, physical abilities, and speech abilities are almost back to 100% the way he was before he got so sick. It is truly amazing how far he has come, considering, about 3 and a half weeks ago, he could barely walk, was catheterized, spoke like a stroke victim, and could barely remember where he was half the time. At one point, he did not even remember who I was, which was my most horrifying point in this experience. He has almost completed a steroid treatment that began with a high dose given intravenously 2 times a day that tapered down to a liquid oral form that we will be giving him every other day for a few more weeks.
A Mother’s Oath
It’s been a long haul.
The nights have been long,
The days even longer.
How much more can I take?
I don’t know how, but I’m still here.
I’m not going anywhere.
I wish I could absorb all your pain,
I’d do anything,
Just to see you smile again.
Close your eyes.
Rest, baby.
Rest for me.
I’ll still be here, holding on for you.
NEVER GIVE UP
This is what moms do.
Put on that face,
That fearless warrior face.
Look strong while
we’re caving inside.
Be positive, when all we want to do
is cry.
We are the warriors.
We wait patiently.
We serve our people,
strong or weak.
We overlook our own weakness.
We reach from above, we reach from within.
We care, relentlessly, fearlessly,shamelessly,fiercely
for our kin.
This is who we are.
We are moms.
Original poetry written by Marie Stephens ©2014