Meet Chiari Warrior – Boston
September is Chiari Awareness month. Each day, I am going to share one person’s journey…in their own words. Chiari malformation is a condition where your brain herniates below the base of your skull, compressing the brain stem and spine. The symptoms are unbearable, at best, and there is no cure…
Boston's mom, Chani, shares his journey...further down Boston explains it in her words.
September 2006 Boston made his arrival, labor was quick and I was on cloud nine a beautiful healthy baby boy! That wouldn't eat and slept for 18 hours straight after birth, this may have been our first clue of what was to follow.
Boston was a very unique baby, he didn't like to be held or cuddled, his eyes always had a brim of red and appeared stressed. He slept in very short increments and usually only in his swing a little propped up. When he nursed we both had to be lying down side by side not able to cuddle, if I attempted to rub his head or hold him he would unlatch and it would be a struggle to get him interested in feeding again. He choked a lot and spat up often. It was a rough start to life for him and a challenge for us. We were told he is colic and had acid reflex. Boston continued to grow and continued with challenges, he never mastered the art of crawling, he got around by scooting on his bum one leg forward one behind. I speak of this because if I knew then what I know now, I would know this isn't a colic baby with acid reflex who is developing at his own pace. I would know this is a child who has a neurological disorder known as chiari malformation.
Toddler life was just as challenging he still wore his distressed face but now with dark circles under his eyes because sleep wasn't a thing that came easy to him. We were told he was just stubborn. He still had some eating issues not being able to swallow different types of foods. We were told you have a picky eater. He finally found his feet at 18 months and began to walk. Constantly bumping into things and always falling down in an instant, almost like his legs would just stop working. I speak of this because if I knew then what I know now these are called drop spells, a common symptom of chiari malformation.
Boston grew and so did his face of distress. He would bang at his head frequently and say he had spiders in his head. Crying more often and telling us he had a boo boo head. He would blank out often and have body tremors. He also developed a lot of sensory issues which came to light when he started preschool. It was as if everything would hurt if anything touched him. We were told perhaps it was time to get him psychology evaluated . His doctor thought perhaps he was on a spectrum. I knew it wasn't in his head and I speak of this because if I knew then what I know now, I would know it was out of his head. Literally because it was chiari malformation.
Jump ahead Christmas time 2010. While decorating the tree Boston had what appeared to be a grand mal seizure and finally we were referred to a neurologist. After many test and doctor visit and with all the medical history from birth to now because not one 48 hour EEG showed a seizure, the nurse called back and said the doctor has diagnosed Boston with chronic daily headaches and to give him ibuprofen. The End. Not the End.
Feeling defeated and saddened for my son I finally pushed back I asked so when my son falls to the floor and his boy starts to tremor only to rise and vomit and then comes the excruciating pain is that when I should give him ibuprofen, she put me on hold spoke with the neurologist and then said he would see us back for a follow up. We returned to his office in January. The doctor claimed to pacify me he would be willing to set up a four night stay in the hospital for a EEG to see if they could catch a seizure, but then Discouraged us not to because it won't be fun to be there. I had no words, they scheduled the test.
After our four day stay the doctor claimed it was a waste of time but for giggles let's set up an MRI, then our world changed. "Your son has chiari malformation, it's not big deal it's just the tonsils are a bit lower, lots of people have it and don't even know it and are just fine." They did one more MRI to find out the flow of the cerebral spinal fluid and then sent us home.
Two weeks passed and still no results. I called the office to see if they were in the nurse got on the phone and said the doctor would like you to come in for results, he can see you next week.
In the meantime Boston was scheduled for his yearly well check, she had the results in his file and told me he was 100% blocked and would need brain surgery.
From there all the proper steps were taken, we met with the surgeon, scheduled the surgery, had surgery and then home to heal. After the healing process Boston had the best six months ever! We saw a new happy carefree bright faced boy, no pains, no tremors, no drop spells, no headaches, a new kid indeed.
But wait......our story has just begun.
Hi I'm Boston, I am almost 11 years old and I have Chiari. I remember just a little bit of all of that but not much. Things I do remember is my surgery was not a cure because if it was I wouldn't have to remember my days that aren't so great. The headaches came back and the pains returned mostly in my neck and legs. Sometimes they are so bad we go to the doctors, but they really don't hear me. That makes me feel like they don't care. My mom found a really cool doctor that does understand and she was the very first doctor to explain to me what Chiari was and why surgery doesn't cure it. That was three years after my surgery. She helped me understand better of what my body needed, to help me deal with the pain. She does osteopathic manipulation and that helps a lot. I like to play hard and test my limits, so I have to know how to make myself feel better. Sometimes it works and sometimes I'm down for the count. Sometimes I need a distraction from the pains, I think that is why I like LEGOS so much. I get lost in creating stuff and it takes my mind off the pain.
So you see there is no quick fix, or black and white answers for those living with Chiari. As a mom to a chiari warrior it is my job to help raise awareness, speak our story, educate & fight for all who live with Chiari. When we started this journey I received the most powerful advice from a man who had lost his son,
"If you don't like the answers, keep asking questions."
I think to myself often if I didn't keep asking questions and pushing for answers where would we be right now. Where would Boston be in his journey of health?
Please help us raise the vibration in the medical community to help spread awareness and to fight for these amazing Chiari Warriors, be their voice. share our story, wear purple for a purpose, tell somebody today about Chiari Malformation.