Tuesday, May 27, 2014

Anna...A Little Girl...Interrupted

Life for Anna…

Over the course of the past 2 years, 6-year-old Anna has been to three hospitals (John Hopkins, Hershey Medical Center and Pittsburgh Children’s Hospital). She is also under the care of a pediatric neurologist and a psychiatrist who have prescribed over 10 different medications in an attempt to lessen her seizures and anxiety. She has suffered through two diet regimes: Modified Adkins and Ketogenic diet and is currently facing the prospect of further testing and the possibility of having her frontal lobe and left temporal lobe removed (1/4 of her brain).

Anna has been diagnosed with Pervasive Developmental Disorder, Epilepsy, anxiety disorder and a form of mild mental retardation. Because her brain never stops producing electrical current, it impossible for her to learn simple concepts like the alphabet Anna must be heavily medicated in order to fall asleep because so many of her seizures occur during the night. She has over 150 seizures a day.

A Glimpse into Anna’s Life
We have always believed that God would heal Anna. We still do. At first we thought He would heal her through man-made medicine. Then we thought maybe He would heal her through the hands of a surgeon. Now we believe He will heal her through the seed-bearing plants He has provided us. Pediatric Cannibis. Will you help give us HOPE for ANNA?

Little Girl, Interrupted by Latrisha Bentch

Someday I’ll be done asking how this happened. Someday I’ll be done asking, “why Anna?” Someday I’ll finally warm up to the idea that bad things happen to good people. Not today though. Today I’m just pissed off. I’m pissed off that there is absolutely no explanation as to why my daughter’s left temporal lobe has atrophied… why does she have cavernomas in her brain? Why is she autistic? I just want to know why my perfectly perfect little girl forgot everything she knew as a toddler.

Anna was the funniest little girl I’d ever met. I know everyone thinks their kid is the funniest kid they’ve ever met but I’m telling you, this kid was a comic genius. She was really bright. One day she brought me a photo album and said, “Hey mom, I got a facebook”. So sweet, so imaginative, so ridiculously cute I could have just watched her all day. But then on the day of her second birthday, something took that delightful little girl away from me. In exchange, I got an angry, sad little 2-year-old, still cute, but damn miserable.

Even more devastating than the fact that her emotions were completely out of control was the fact that she couldn’t remember some of her favorite songs. She no longer seemed to be comfortable with family members. It was sort of like she didn’t know them anymore. She stopped counting. She stopped saying her abc’s. She forgot who she was. She was interrupted.

In place of her usual hobbies, she became obsessed with puzzles. She was suddenly fiercely independent and would spend hours assembling the pieces, taking them apart, and reassembling. She would insist on only wearing pajamas with buttons. She would throw a massive temper tantrum if she got so much as a drop of water on her clothing. As if the tantrum weren’t irritating enough, she’d then strip naked and insist on different clothes. She no longer went to sleep at night. She’d stay up until 3 or 4 crying, screaming really. Some nights the only thing that would calm her was to give her a comb and lie down with her so she could run it through my hair over, and over, and over.

Somewhere after that, I began to notice strange “muscle spasms”. At least that’s what I thought they were. When I’d mention them to doctors and family members, no one seemed terribly concerned. She was diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified. Along with PDD-NOS, she was also diagnosed with anxiety disorder. Anna didn’t really talk much anymore so it wasn’t until she began being vocal again that I noticed these spasms were interfering with her thought process. Something more was going on. She’d come into the room where I was and say, “Mommy, I need you to…” (head goes down, arms go up, a small stumble backwards, head back up, arms go down, a smile in my direction). Then she’d walk away. I’d say, “need me to what, Anna? Anna, what do you need?” nothing. She didn’t remember.

She was interrupted. I still didn’t realize she was having seizures. I thought when someone had a seizure, they would drop to the floor and convulse violently for a few minutes. When her psychiatrist caught one of these episodes out of the corner of his eye, he knew immediately what was happening. He set up an appointment for her at Hershey Medical Center. We were there the next day. She had an MRI and EEG, which showed atrophy, cavernomas, and seizures with a slow spike wave in between.

Since then, Anna has had more EEG’s, more MRI’s, 2nd opinions, 3rd opinions, 4th opinions. She’s been on 6 anticonvulsants, 2 extreme epilepsy diets, and several other prescription drugs that are intended to lessen her anxiety and help her fall asleep. Since stopping the Ketogenic diet 4 months ago, she has gained 9lb’s. If you don’t know what 9 lb’s looks like on a 5 year old, imagine a very small person with breasts and cellulite who wears size 8 pants that have to be rolled at the bottom to make them about 10 inches shorter. This is what happens when you put small people on metabolism-altering diets. I suppose I wouldn’t be so irritated about the effects of this had the diet helped even a little. But hey, these are the treatments that we have to pick from in Pennsylvania. Tough break, Anna, you were born in the wrong state.

Or maybe, just maybe, she was born in just the right place. And God allowed her to become sick knowing that I’m a strong enough woman to fight this good fight. Just strong enough to continuously be told not to bother trying, but to continue to try anyway. Hmmm… maybe that’s the answer to all my “whys?” Maybe it’s time to take the anger I feel about all the unanswered questions, and redirect it to the unsympathetic people who are denying my little girl the cannabis medicine she needs to continue in life without being interrupted.

Update May, 2014

Since the SB1182 hearing on Jan 28th, I would estimate that my daughter, Anna, 6, has had roughly five thousand, seven hundred, and fifty-five visible seizures. She has had two trips to the emergency room for seizure related injuries. She’s had two appointments with her neurologists to switch from one ineffective anticonvulsant with horrible side effects, to another anticonvulsant with horrible side effects. She’s seen her psychiatrist and her pediatrician, and had blood work done. I, with the input of her team of specialists, have done everything I could to give her the best care allowed by law in the state of Pennsylvania. Unfortunately, it’s just not good enough.

She has had another EEG and other neurology appointments because her doctor has had to have a closer look at all of her seizure types. You see, she started with just one seizure every two weeks. That was two years ago. Fast forward to present day and what you’ll see is a month by month progression in her disorder that shows a 2100% increase in seizure activity. As if that weren’t disturbing enough, her seizure types have changed. They’ve become far more dangerous and violent.

Seeing my precious little girl’s health deteriorate makes my heart hurt. Sadly, what epilepsy does to children is devastating, but what it does to a family unit is almost unbearable. Since the hearing, Anna’s father and I have continued on a roller coaster of emotional turmoil. Our marriage is like this tangible thing...like this cracked vase that I hold tightly to, hoping it won’t shatter. But to be quite honest, each day that goes by where we are subject to watching our child in this state of agony, is another hairline fracture in this make believe vase. I wonder sometimes if these lawmakers ever consider the fact that some families won’t have to move to Colorado to be torn apart.

I consider myself a happy person, a content person. I don’t look for a fight. I don’t look for the next best thing. I live simply. And I feel peace in my heart knowing that God has given me the life I was supposed to have. I can accept my daughter for who she is and move forward accordingly. But what I cannot live with, what I WILL NOT live with, is the fact that there is something that will help my daughter and she can’t have it because of invisible state lines and the barbaric laws that are enforced within them. And suddenly what has become very clear to me, is that anyone who CAN live with that has now carved themselves a place in our opposition.

~Latrisha Bentch

“If you are neutral on situations of injustice, 
you have chosen the side of the oppressor.” ~Desmond Tutu

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