Monday, November 25, 2013

The Journey of a Diagnosis

If you're reading this, you have most likely been touched by a child with special needs. Maybe you carried them in your womb and you probably carry them in your heart. You may be their teacher, their friend, their parent, their doctor, or their therapist. There may be more then one child or adult with special needs who has touched your life, and each of them has their very own story -- their journey.

Not every diagnosis is cut and dry. Not every diagnosis is a blood test with an answer. Most diagnoses are arrived at by hours, days and years of testing and investigating. And some, are constantly evolving. Some journeys are more involved than others and in so many cases a diagnosis is just that -- a label. It doesn't make the hard things easier. It may provide a course of treatment, but it doesn't always solve the more complex problems. I find myself yearning for the days of: "my ear hurts" and knowing it was an ear infection and antibiotics could just fix it. I find that I am in one of those places where I'm battling the acceptance of the unknown. The unanswered questions and baffling symptoms are continuously mounting and there is no reason that we have been able to logically find.

Are you in this place? Have you been in this place? I can usually handle it; I'm usually good to go. The past few weeks have been different. Little Miss M had to go 'cold turkey' off a med due to systemic complications. She is struggling. We cannot tell if the excessive saliva foaming in her mouth is seizure activity or if the "brain freezes" she complains of are the same. A parent knows their child. When I say the child is "off" or "altered," I mean my daughter's personality is not showing through. She's not there. When your child's balance is so off, you have to hold her up as she walks down the hall or up the stairs -- something is wrong. When your child breaks out in a large, foreign, localized rash after complaining of pain in that same location -- something is wrong. When your child who never complains of pain, wakes up sobbing at 2:00am in pain -- something is wrong. When you've run to the Emergency Room at least six times in as many months, and you still have no tangible answers -- you want to pull your hair out! Have you been there?

We recently went to a new orthopedic doctor, because Little Miss M's balance was bad and for some reason, over the summer, her gait significantly changed from wide-based, to in-toeing and a turned-in leg. He asked me what should have been a simple question: "What's her diagnosis?". I had no answer. I said: She has a history of seizures and is diagnosed with epilepsy. She is diagnosed with Autism Spectrum Disorder, ADHD, Developmental Coordination Disorder, Asthma, Sleep Apnea - but none of that was what he was getting at. None of those conditions explained the change in gait, the difficulty walking and issues she was seeing him for. I told her pediatrician of this interaction; he smiled and said "Isn't that the million dollar question!".

We've been through this for years. After Little Miss M had her first seizures at age one, she was worked up for every genetic epilepsy they knew of. She was then worked up genetically again for every known disorder you could somehow apply to her struggles. We did blood tests, genetic counseling, MRIs, EEGs, X-Rays, and cognitive tests. We traveled three hours to a Children's Hospital to see specialists in epilepsy and development. It is difficult to find specialists when you don't know what you are looking for!

Most days, I wake up and smile. I look on the sunny side of the situation. I cherish the smiles, the laughter, the connections that are made. I try to structure the environment to help Little Miss M be as successful as possible. However, since an unknown illness this summer zapped Little Miss M of all her energy, stole her gait and seemed to really change things -- I've been on high alert! Mommy-mode is this intense state of equal parts high energy and anxiety. I watch her extra close. I must ask her if she's okay about 250 times, and I worry. I know this state will pass, and I also know that having a label for whatever Little Miss M is battling won't make it go away. However, sometimes this journey gets lonely and tiring. The constant phone calls to doctors, necessary trips to the Emergency Room, multiple trips to doctors and juggling all the emotions while making your child feel safe and taken care of and making time for other children -- it's certainly a journey.

I personally thank you for reading a part of our journey to a diagnosis. We look forward to hearing yours. I don't want others to have to take this journey, but knowing others are out there and truly understand, does help. Please comment below or submit your story to us here: All-Star Bio.


Amanda is thankful for her family and for doctor's who have vowed to never give up giving Little Miss M every advantage possible to make her as successful as possible.

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