The Faces of Guillain Barre 2017: Day 11, Part 2- Autumn

Thursday, May 11, 2017 0 Comments

Autumn was normally a healthy, happy little 2 year old child. Dancing, playing, keeping up with her sisters. On this day 2 years ago life was normal. Well however a normal, crazy, busy life of a family of six can be. But this particular morning something was not quite right, for some reason she could not stand or walk on her own.  

The day before Autumn got sick. 

On day 1 we brought Autumn to the hospital Emergency. I worried maybe she had menningitis. While at the hospital her voice began to sound a little hoarse. Doctors thought maybe she had a virus. They gave us a nebulizer with some meds and that evening sent us home. The next morning she was weak, could hardly raise an arm and she was going downhill fast. We took her back.
With no recent vaccination or injury, no previous signs of illness doctors were stumped. blood, saliva, x-rays taken and nothing to blame yet. Autumn was admitted and in less than 48 hours on her first overnight stay Autumn's nurse called a code blue. Autumn was rushed to ICU and intubated.

Autumn in ICU

 She now has pneumonia. Her heart rate is not stable. She gets a nerve conduction test and spinal tap. Because the cause of GBS is unknown and hard to diagnose, all other tests are like a process of elimination. The spinal tap showed high protiens in her spinal fluid and the nerve conduction test showed no signal to her hands and feet by electrical stimulation. I think because a virus was suspected, the infectious diseases unit came in. Donned in all yellow clothing covers, face masks, gloves. Asking all kinds of questions all the while I thought is this real? We also had to change and sanitize each time in and out of autumns room after that. 

 On day 4 she is diagnosed with Guillain-Barre' syndrome. One round of IVIG blood treatment was given. We could hardldy say the words Guillain-Barre' syndrome. How are we supposed to explain to our family? And for such a big name how did I not hear of this before? And why doesn't anyone know if she will be ok? As I wandered those hospital halls for the 100th time it felt (probably more), I noticed one small sign on a bullitin board that read GBS/CIDP support group meeting bi-weekly. In this giant hospital I thought there should be something bigger out there. I felt like I should have known all about this mysterious illness that my child is up against. So I thought there has to be more. I was affraid to talk to anyone and I was afraid to google anything for fear of finding out the worst case scenarios but I think searching was the best idea. I think searching online prepared me...well helped me understand how her body was behaving anyway! Nothing could have prepared me for this!

 On day 5 was just one MRI left (Just to dot the I's and cross the T's doctors said). Autumn was then diagnosed with Transverse Myelitis (that means they found swelling in the spine). A curve ball. Doctors had to decide if steroids were going to be used or continue with the IVIG blood treatment. Most Importantly, they had to stop the swelling. They decided to go with 5 days of agressive IV steroids. She had hypertension. Her oxygen levels were not stable, her heart rate was still not stable, she had alot of mucus in her lungs and her diaphragm was not working. 
On day 7 I did not truly know for sure if I would be taking Autumn home.

Once the steriods were stopped she then started plasmapherisis ( a slow 3 hour process used to drain blood from the body, separate plasma from the blood cells and return donated plasma and the cells to your body. The exchange replaces antibodies in the plasma that attack the immune system.) Her hemoglobin was low. Autumn needed a blood transfusion. Doctors told us that once their symptoms are at their worst GBS patients hit a plateau and then slowly improve. I wondered if her symptoms were at their worst. I thought how could it possibly get any worse?

Autumns first time outside as her twin sister picks a flower for Autumn to smell....ahhh all of a sudden only these little things matter and all the big things that mattered don't anymore.

It wasn't until day 10 I believe that we were seeing small improvements. Or maybe at that time it was that she wasn't getting any worse. It was a roller coaster recovery. Doctors believe that because she was only a child her recovery was a speedy one. Guillain-Barre' syndrome affects only 1 in 100,000 adults and less in children, only 0.5 in 100,000. Transverse Myelitis affects 4.6 in 1 million people. Mostly aged 10-20 and after 40. Autumn spent 19 days in the PICU and 11 days in pediatric care. Remarkably It took Autumn only 46 days to take her first steps but a couple of years so far to almost fully recover. Autumn was just lucky I guess.. and in less than 2 months even more lucky to have walked away.

The only cause for her illness that doctors could blame was a test that came back positive for rhino-virus (a common cold) that we believe everyone had previous to autumn getting sick. She had no symptoms for days or weeks leading up to her hospitalization. Besides all of the medications...Autumns course of treatment was 1 IVIG, 5 days IV steroids, 1 IVIG, 5 days plasmapheresis, too many medical staff than I can count and a lot of pain that I could not ever imagine in 1 lifetime.

Autumn playing the best she can in her hospital bed 

16 months post GBS/TM doing bicycle tricks with her sister.

Autumn 2 years post and no one can even tell that she was ever so sick. 

I remember bringing Autumn to the park when we first brought her home from the hospital. She couldn't do much other than barely sit but she loved it there. She was so thin and weak. Just sitting in the sand. Dark circles under her eyes. I thought to myself, boy if someone approaches us they are definitely calling childrens services on me. Now she is back to running and playing and causing trouble. There are times she gets sore or tingly feet. I can hear a difference in her voice still but she is here, she is loved and she has an amazing story that I hope she can use to help another person in need of support!

 Love Danielle and Autumn
Alberta, Canada

This is a video that Autumn's parents created when she was a few months into her recovery. I remember watching this video nearly 2 years ago and being inspired by this little girl. But also baffled about GBS. How only one twin is struck by GBS. Even so, we all know that GBS affects all loved ones.